Chiari Endoscopic Decompression Surgery

An Answer! FINALLY!

2011-12-02T06:39:00.000-08:00

It's been awhile and a lot has happened! We found a gorgeous home which I am absolutely in awe over. I quit my job because there is nothing worse than having to be someplace that makes you sad and miserable. My husband and I started our own business together :)) Very excited by this!

Now, on to the answer mentioned in the title...

When I was first diagnosed with Chiari, I also received a border line Ehlers-Danlos diagnosis. My new PCP is the most wonderful man! I was having chest pains and shortness of breath. He ordered an echo, which revealed Mitral Valve Prolapse with mild Mitral Valve and Tricuspid Valve insufficiency. Now, I have had 2 echos previously and never has this been mentioned... not sure what that means. As is the case so often, I imagine they were withholding that information because it wasn't anything I needed to worry about. I hate when doctors make decisions for me! Anyway, I had a long talk with my doc and he agreed that EDS was a possibility and sent my med records to the Mayo Clinic at my request. After review, the Mayo doctor (a geneticist)called me and talked to me for about 30 minutes. He said that, after looking over my medical history, he was 100% sure I had a connective tissue disease and almost positive it was either Classical or Hypermobility Ehlers-Danlos. He said he could not diagnose me for sure without seeing me but wanted to go over my expectations should I go to Mayo. FINALLY, an umbrella diagnosis that almost all of my conditions!! It may sound weird to some but I doubt it sounds weird to anyone reading this. After all these years, there is an explanation for the pain and problems that have plagued me most of my adult life. I have found an EDS expert right in my own backyard. He is located in South Bend, IN. His name is Dr. Lavallee. I am currently trying to get an appointment but his office does not have the greatest customer service :( The lady that answers the phone is awesome but I can't get the nurses to call me back.

I will update when I know more.

BIG NEWS...

2011-08-03T14:26:00.000-07:00

As many of you know, my family has recently moved. We are in a new town and that means new docs. I have scheduled appointments with a family doc, but also with an OB/GYN and a Neurologist. Both of these doctors are important and will need to work together as my husband and I have made a really big decision... we have decided to try to have a baby again! For those of you who do not know my story, I had a tubal reversal back in 2006. The following year and a half contained two miscarriages and an ectopic pregnancy. We gave up trying due to the emotional toll it took on our family. A month ago, we had a long talk. I love my husband so much. He has no biological children. He longs for a little one to call him "Dad". I am terrified, though. That is why I am seeing the specialists.

I would greatly appreciate any helpful information from those of you who have had pregnancy after diagnosis. I have read that vaginal birth and Epidurals are bad for Chiarians. I have also read they are safe. I am so confused. It appears that the safest form of delivery is general anesthesia and a C Section :(. This is all in the miraculous event of a successful pregnancy...

Please help!

Ahhh... relief :))

2011-07-30T10:47:00.000-07:00

Just finished with Thomas, my new massage therapist. He was phenomenal! He beat the crap out of me and I loved it! I feel so much looser with full range of motion again! He is tatooed and married, about my age. He is also legally blind which I think makes him an awesome masseur. Since he cannot rely on his sight, he relies on his sense of feel. Man, it was good :) This town holds so much promise... first, Hinder comes to our county fair and now I find an amazing pain manager! Life is good!

Rain, rain, go away...

2011-07-28T07:28:00.000-07:00

Ugh... more drugs last night. These storms are beyond annoying at this point :(

Last night, I showed my husband the blog and explained that I am going to be more active on the site because I believe this is an ingredient in the recipe of my happiness. He brought up a good question: What would someone reading this think about the success or failure of the surgery? So, I feel the need to summarize my health since having the Endoscopic Decompression at the Cleveland Clinic, June 2008.

I still have headaches (obviously) but not everyday like before surgery. Change in barometric pressure cause my headaches now. Prescription migraine medicine (Axert) takes care of them but are very expensive. I also get pain in my spine along with the migraines. A little Ibuprofen takes care of the ache.

My left leg, below the knee, still has peripheral neuropathy. Mostly my foot goes all tingly. Sometimes the tingle is so intense that I cannot think of anything else. Another interesting development is that my foot muscles spasm causing my toes to curl painfully under and get stuck. It feels as intense as a charlie horse in my foot. Maybe that is what it is... not sure but hurts like hell.

The compression of my brain stem and lack of CSF flow caused injury to my Autonomic Nervous System (ANS) called Dysautonomia (diagnosed at the Vanderbilt Clinic). The Dysautonomia comes in many forms; for me it presents as Postural Orthostatic Tachycardia Syndrome (POTS), Sjogrens (dryness of the mucus membranes), slow motility, and Raynaud's Syndrome (circulation issues). There is also argument that Autoimmune Diseases can result from Dysautonomia. I have two; Hashimoto's Thyroiditis (hypothyroidism) and PCOS (Polycystic Ovarian Syndrome). I also have some sort of issue with my muscles but have not had a diagnosis for that yet. They tense up and spasm causing anything from annoyances to crippling pain. My massage therapist has told me numerous times that I am the worst she has ever seen. Awesome.

Medications: T3T4 compound, Pindolol, Prevacid, Miralax, Spironolactone, Evoxac, and Flexeril. For my headaches, I take Axert. About a year ago, I started to drink green tea at least once a night. I have found I no longer get sick. Even if I start to feel a cold coming on, it never develops into full-bore sickness. I believe this is directly related to my intake of the tea.

The worst symptom I deal with, by far, is the fatigue. I am so tired of being tired. I have found that regular daily exercise does combat this. When my doctor first started suggesting this, I wanted to punch him in the face! Didn't he understand how flipping tired I was? How in the heck was I going to muster the strength to exercise when I could hardly muster the strength to get out of bed in the morning? Well, I reluctantly admit he was right. I cannot do much; not nearly the workout a normal person can tolerate. Twenty minutes on the elliptical is about all I can take when it comes to cardio and it took me about three months to work up to that. Since moving out of our house, I haven't been able to exercise and I am suffering for it. The elliptical is in storage. I now do some leg lifts and planks, but it is not cardio and therefore not helping at all with the fatigue. I just want to sleep all the time. Hopefully, I will have my new home soon. We have a workout room in the basement.

I guess what I want folks to take away from this blog is that Endoscopic Decompression probably saved my life. Sure, I have all of these problems, but they are just leftovers of a very serious skeletal deformity. The surgery corrected mother nature's mistake. It stopped the progression and even reversed some of the affects. With the combination of the surgery and correct diagnoses by informed doctors, I now want to live. My life is good and I am happy. Not every day is filled with pain. Actually, the majority of my days are pain free. I cannot ask for anything more.

Finding my happiness.

2011-07-27T06:15:00.000-07:00

I haven't updated in almost a year. For the majority of it, my Chiari has been "sleeping". Lately, however, I have noticed some changes. It is funny how soon we forget the pain when it is no longer present; kind of like childbirth. This season has been unbelievably wet and, as most of you are aware, we are extremely sensitive to barometric pressure. I have so many headaches now. This of course leads to the overuse of medication which morphs into a rebound headache. Always a good time.

My husband and I are doing extremely well as a couple. We have recently moved. With the blessing of God, we sold our house back in May and are now in the process of purchasing a new one. Everybody please pray that our selfish government officials do not screw this up for us!

Little update on the Fam: Today is hubby's birthday. We are staying above a pole barn in the country owned by one of hubby's co-workers. They are very nice and will be coming over for birthday cheesecake. My girls are doing great, as well, although I have not seen them for most of the summer. My eldest is driving and my baby will be eleven next month. Good golly I feel old!

Moving to a new town has its difficulties, especially when you have a rare medical condition (or 2 or 3+ as most of us do). I have to find a new doc which is such a tedious process; I just got done training the last one! I think I have found a new massage therapist already, though. Hopefully he is a keeper. My friend and former massage therapist is going to call him and give him the low down on my condition. I told her to make sure he knows how much I like pain. Seriously, if I can't feel it how is it working? If I want to be petted, I will lay next to my husband ;) I will find out on Saturday if my new masseur is any good. Keeping my fingers crossed for some non-medicated relief.

So many things are going on in my life right now. I am searching my soul to find out what makes me happy. I have found myself depressed lately. The other night I cried my eyes out... I was just so sad :( There are so many young people where I work and they are established in their careers and making really good money. I had my brain surgery in June of 2008, went back to school in Dec. 2008, and just graduated last year; I am just beginning my career. I am almost 38 years old and making the same money as the high school fry cook. I am tired and hate the idea of starting from scratch. My husband said, "find something you love and I will support you". He is a great husband! I think what I love most is writing and helping people. Here, on this blog, I can combine both. So, this is me finding my happiness...

Personal Update

2010-08-24T03:21:00.000-07:00

Well, I haven't been on in a long time and I have received quite a few comments on the blog so I thought I would update. I finished college in June and now have my BBA in HR Management. YAY! Currently, I work for my old employer on a temp basis. I have a second interview this week at a job that I really want since it is in my field of study. Wish me luck!

I no longer take Protandim and have taken the link down. I developed oozing raw patches all over my face. Finally, the doctor who created Protandim admitted that folks with autoimmune issues should not take Protandim as it amplifies the disease! Fantastic!! I specifically asked the question before I ever tried it and was told it was completely safe to take. It did get rid of my headaches so I won't trash talk it but I am unhappy with the company and its "doctor" for lying to me and making me look like a fool in front of all of you. My relationship with them is finished.

Thank you all for your comments and questions. I am so happy this blog helps so many who are looking for information on an alternative to the hatchet job :)

God bless,
Lori

MIL is hooked!

2010-05-14T04:31:00.000-07:00

My mother-in-law has RSD (what Paula Abdul has, it is characterized by chronic debilitating pain - sound familiar?!?) and arthritis and asthma. She has been on Protandim for less than a week and she says it has helped both her arthritis and her asthma!! Awesome!! She said she hasn't had to take near as much asthma meds and this is in a little less than one week of taking the supplement! I am so excited by this! She is an awesome lady! I am going to send a sample to her brother-in-law next. He has scleroderma, which is an autoimmune disease causing tightening of the skin. Hopefully, he will find some relief in Protandim.

Still have free samples left! If interested just click on the link to the left.

Much love,
Lori

Back From Tiff's

2010-05-11T11:33:00.000-07:00

Well, I have fabulous news to report! Tiff said that the fascia was completely out of the way and she could get to the knots easily!! Yay Protandim!! She was stunned in disbelief. She told me that she has people come in all the time trying to get her to buy/sell supplements and all natural remedies for pain relief and they are all crap (her words). Tiff said this is the very first time that she has felt palpable proof that a supplement worked in healing the body! She is now trying the six day trial that I am offering to y'all PLUS she is offering my information to all of her clients and has my Protandim newspaper on her practice table. I am so very happy that I will be able to help others :)) I can't wait to start hearing from all of my Chiarian brothers and sisters who have requested samples. They should be receiving them in the mail today!!

Much love
Lori

Dreary Weather, Beautiful Day :))

2010-05-11T06:24:00.000-07:00

Well, the weather is horrible here in Northeast Indiana. Lots of rain and overcast. Before Protandim, I would have been in excruciating pain as soon as I woke up (hell, it probably would have woken me up!). After Protandim, I woke up having no idea it was raining till I heard it hitting the house. No pain at all. Not even a shadow of a headache! My poor teenager has inherited my migraines and she woke up in horrible pain :( I think I will start her on Protandim as well.

Talked with Ann Hood again yesterday. She is adding Dr. Di to the list of recommended docs on WACMA! I am very excited about that. I am to call her back tomorrow to discuss my blog and endoscopic decompression. She rocks! Ann is as passionate about getting the word out as I am!

Well, it is off to Tiff, my massage therapist, to see if Protandim has helped my muscles again. I will post when I return :)

Much love
Lori

Quick Update...

2010-05-07T04:05:00.000-07:00

Well, it is raining here in northern Indiana this morning. Normally, rain would equal misery because I would have a raging headache thanks to the weather and barometric pressure change. But, guess what, I don't even have a hint of pain! NONE! I love Protandim :))))

I also want to send love to Rich who just flew out to San Fransisco to perform a couple concerts! He took his parents with him :) Isn't that sweet? He's adorable! Anyway, he has a Protandim meeting over there as well so I cannot wait to see what info he brings back for me! Let's all send good thoughts his way for a successful concert and meeting. If you're in the San Fransisco area look up Rich Hardesty and check out his concert. If you have any Protandim questions, I know he would be happy to talk with you :)

Here is to a pain free day for all of you,
God Bless!
Lori

Protandim Arrived!

2010-05-05T11:58:00.001-07:00

I have mailed out the samples to all those that asked :)) I am so excited to hear your experiences. If there are any other Chiarians that would like to try Protandim for free, just send me an address and I will get it to you. This is truly exciting for our community!!

Conversation with Ann Hood (WACMA)

2010-05-04T10:33:00.000-07:00

I wanted to tell y'all about my conversation with Ann Hood (WACMA - Chip's sister). Many of you, if not all of you, are members of WACMA so I am sure you know who Ann is. Anyway, I talked with her last Friday regarding getting the message out to Chiarians about endoscopic decompression. I had noticed on WACMA, that all the info was really about the old school zipperhead surgery. First, let me tell you that she is one great lady! She was a hoot! We talked about exactly what endoscopic decompression is and who qualifies for the surgery. She was very interested in what I had to say. I told her that the leading Chiari doctors (Oro and TCI) don't promote it because there is no money in a surgery they cannot perform. Endoscopic surgery takes amazing skills and tedious training. It is hard to perform brain surgery on a TV screen! Dr. Di developed some of the instruments he uses in the surgery because it is so new they didn't exist. Ann said she was going to shoot one of the TCI docs an email to ask why they do not provide the choice of a much less invasive decompression with a much quicker recovery time and a shorter hospital stay (24 hours for me!)! Isn't that awesome! Ann will get us some answers :) I just love this lady!! She was so supportive. She is going to put a link to my blog on WACMA's site!! How cool is that? She had to go out of town for a week but I am to call her next weekend to go over what TCI said and to see how else she can help me spread the word. She gave me contact names of key players from other sites and I am going to contact them to see if they would be willing to help educate our community on the endoscopic alternative. I started this blog to help my Chiarian community. Between having Ann on my side, this blog's success, and Protandim, I am realizing my dream of paying it forward! Here is to all of those who helped me get well, now I am well enough to help others... full circle :)))

Life is good!
Lori

Update On Samples...

2010-05-02T07:39:00.000-07:00

For all of you who have written me requesting a sample, it did not arrive this weekend. I am hoping that it will be here Monday. Oh, and one more thing, I found out the easiest way to get it to you is to send it regular mail in an envelope which only requires a stamp. This means I will not need reimbursed for shipping it to you. I thought it was gonna be a bigger deal shipping it since it is a pill, but Rich just sent my six pills wrapped in a paper towel in a 44 cent stamped envelope. Works for me! I can afford a book of stamps, LOL :))

FYI, I still have samples left if anyone is interested. What harm is there in trying something that may relieve some of your symptoms and give you better quality sleep which in turn makes you feel more energetic and alive? Especially when that something is all natural and FREE!! I plan on following those who are trying out the samples, as much as they will allow, and reporting it on here. Hopefully, Protandim will make as big of a difference in their lives as it did mine!! I am so happy God has afforded me a way to help my Chiari community! I feel so useful now! So many years wasted, sitting on a couch, feeling useless and helpless. Now, I have the power to take control of my own life and the blessed opportunity to make a difference in the lives of others!

I had a lady contact me from Florida who has requested a sample of Protandim. She is in bad shape and nothing seems to have helped her. Her husband even reached out to me! How beautiful is that!! You could feel the love he put into the email. Anyway, Rich (the Singer) will be in Florida in the next month or two and if all goes well with the six day experiment, the couple who wrote me want to meet with Rich. That is why Rich will be down there, he is talking with a group of folks down there who are interested in Protandim. So, my point is this, if any of my readers are from Florida and would like to meet Rich and talk with him about what the supplement is and what it can do for them, just let me know and I will make sure you meet! He is a very kind man and getting the word out about Protandim is his passion. He believes so strongly on the healing agents in this supplement. So do I, as I have witnessed it for myself! The weather is horrible here in Indiana. It is raining and overcast, I should be a throbbing painful mess. But I am not. Can only attribute that to Protandim! I am so excited for those of you who are trying it!! I cannot wait to read your take of the supplement!

My little experiment...

2010-04-29T08:42:00.000-07:00

Ok, so I am performing a little experiment on my body. I stopped taking Protandim two weeks ago and went to the massage therapist last Tuesday. She was in awe at how tight my fascia was; the muscle knots wouldn't budge. (This is in sharp contrast to when I was on the Protandim and my usually cement muscles were more like molding clay!) According to her, I am a mess! Thanks Tiff!! Anyway, the Singer sent me six pills till my order could get here. I received his pills yesterday and started taking them immediately. Now, keep in mind that I have had non-stop daily headaches for the last week and a half or so - ever since I ran out of Protandim. Well, took Protandim last night and guess what?!? NO HEADACHE THIS MORNING! I swear God put the Singer in my path to deliver this miracle to end my suffering. More importantly, it has always been my dream to give something back; to help my community in some way. Now I have that opportunity. It is a dream come true :) Anyway, my experiment is to go back on Tuesday after 6 days on the supplement and see what she feels. She is also in on the experiment. As I mentioned before, she is going to display info at her massage business and advice her medical clients about Protandim. She is eager to see the miracle repeated.

By the way, I am tired of typing "The Singer" so I asked him if I could use his real name on my blog. He said absolutely. I haven't thus far because this man makes his living with his voice and name (his band has his name) and I didn't want to do or say anything to jeopardize that. My decision, not his. Anyway, his name is Rich Hardesty. You can google his name and find out all about him. He is sort of a free spirit, lol! Google him and you will see what I mean. He is the friend that gave me my first bottle of Protandim. It cost him money, but he did it out of the kindness of his heart and his compassion for humanity. I told him about our condition and the daily pain that comes with it. He knew he had something that could potentially help me, so he shared his private stash. He has a big heart :)

Rich texted me about this girl he met who has a suprasellar arachnoid cyst that she has had since she was three. Arachnoid cysts are found in folks with Chiari due to the build up of cerebral spinal fluid. Anyway, Rich turned her on to Protandim and she is excited to give it a try. He asked if I would talk to her, which of course I agreed to. Everyone needs someone, and while our disorders are different, they are close enough to relate with each others' struggles. Some of you out there may actually have arachnoid cysts, so you could probably totally relate. I told Rich that I want to hear her updates because it directly affects our Chiari community. I cannot wait to see what Protandim does for her! I will keep you posted on both her experience and what Tiff (my massage therapist) finds next Tuesday when she is trying to break through the cement wall that are my back muscles.

Much love!
Lori

PS I am so excited for all of you that are requesting the samples! My order should be delivered tomorrow, possibly Sat. I will send them out to you as soon as I get them! Just remember to keep my posted on your experience!! I can't wait to hear what Protandim has done for you in the short six days you will be trying it :)))

Clarification

2010-04-28T02:54:00.000-07:00

I seem to have confused some of you as to where to get Protandim. I have recieved a few emails asking which stores carry it. Unfortunately, none that I am aware of. First, I strongly suggest you take me up on my offer to send you a 6 day trial of the supplement. Why spend money on something unless you know it will work for you? If you do want to purchase an entire bottle, you can get it by following the link to the left (or clicking on "Protandim") and clicking shop or enroll. There is a wealth of knowledge within the link that you can view, including a Prime Time live report on Protandim. I know they sell Protandim on ebay (just be careful). I think that is about it. If you want more information on Protandim, send me your name and number and I would be happy to have the Singer talk with you. He is a love :) He is only in this to help people after he saw what it did for his mom (who has MS) and his dad (who has a brain tumor). He is a good man who is sacrificing a great deal to support his parents. He moved back home from Los Angeles to Indiana to take care of them and uses a great deal of his own money (he has a successful singing career and a cult following from college students) to support them. How many men do you know that would put their dreams on hold to take care of their ailing parents?

The Singer is the one who gave me my first bottle because he felt sorry for me, lol. (I am pathetic when I am in pain :) After taking Protandim for a month I was astonished at how fantastic I felt. The most amazing thing by far was the complete and utter lack of headaches!! When I found out that you can only get the supplement from a distributor (basically you have to know somebody who knows somebody), I decided the best way to get it to my Chiari community was to become a distributor. I didn't do it for the money, it actually cost me quite a bit to become one and sales is not my thing. I simply did it to offer y'all an easy way to get your hands on a supplement that could potentially help you to feel better like it did for me! If you don't want to buy it from me then buy it someplace else, please just try it! Take advantage of my free samples! I implore you because I know what it is to suffer endlessly, without hope.

What a miracle Protandim has been in my life! When I am taking it, I am no longer in pain. I feel no aches or throbbing or burning in my shoulders and neck. I feel so unbelievably normal, like I don't have this horrible affliction known as Chiari. I feel 20 again :))))

Supplement revealed!!!

2010-04-26T09:15:00.000-07:00

The name of the supplement is Protandim!! Changes I noticed whilst being on Protandim: complete cessation of headaches, better quality sleep, higher energy levels, lessening of my peripheral neuropathy in my foot, and my skin cleared up and softened! Another unexpected miracle is my fascia released (tight fascia caused debilitating pain in upper back and neck)!!! My massage therapist has been working for over a year to get through my fascia which she says is so tight that it distorts my muscles into horrible knots. She said I am the worst case she has ever seen. She was about to send me to a specialist in fascia release so that she could get to the knots. Two weeks into the Protandim experiment, she got through easily! My knots were almost none existent! How can that be?!? I have suffered for years!! I have no idea how, but the Protandim is the only thing that I had changed. My massage lady is so impressed (she works almost exclusively with medical massage), that she is going to tell all her clients about my story and Protandim. She has asked me to drop off information that she can copy and hand out to them, as well as leave in the waiting room of her business. How cool is that! She is amazed at the difference she sees in me after taking the supplement.

After talking with my husband about Protandim and the miracle it has been in my life, he decided to fund my distributorship. I am very excited. I already have half the town were I live ready to try it! They have seen the difference it has made for me. If you want to get it somewhere else, please do! Just get it! Try it! You will not believe how differently you feel, even within a week! There is a link to the left which offers more information for those interested.

Personally, I would have never bought it if the Singer hadn't sent me home with a bottle. So I am offering the same to all of you; a free sample (now I can't give out a whole bottle to everyone, but I will give out a 6 day trial sample which is all you will need to see a difference)! If you want to give it a whirl to see if it changes your life as it did mine, or you have any questions regarding Protandim, just email me direct. If you want the sample; send your name, address, phone number and a brief description of why you want to try Protandim. I get a few free bottles so I will divvy them up and send them out to my Chiari family. Pay it forward, I believe is the expression. I do ask that you pay for whatever it takes to get them to you. I am not a rich woman, lol, and I am assuming that I will have a lot of takers.

Unfortunately, I ran out of the supplement a little over a week ago. The headaches are back, fierce and daily. I had forgotten what it was to be in chronic pain :( I have taken almost all of my Axert (migraine med) because the weather keeps changing and that is always a trigger. When I was on the Protandim, I had no headaches! NONE! Not even migraines with weather change! Since stopping the Protandim, my massage therapist says I am right back to the tight fascia and muscle knots :(( I am in so much pain. This is the reason I am a week late in reporting my findings to y'all. It is hard to think past the headaches, but I am preaching to the choir.. you are the one group of folks whom I know can understand. I can't wait to get my new bottle of Protandim! I want to be a normal, functioning human being again :)))

Love to you all!
Lori

Almost there...

2010-03-25T11:07:00.000-07:00

Well, I sent the singer all of the emails I received in regards to the supplement. This is what he wrote back:

Lori,
This is amazing. You are the ring leader for your condition. Wow! I passed this on to Scott and Linda. I am going to share your story with the Dr. and CEO on April 16th when I am at their house if you don't mind. You can really help so many people and it is touching to read their notes and how they are reaching out for hope. Talk to you soon.

Don't worry, I set him straight on the ring leader part :) I told him I am more of the red-headed step child of Chiari. I don't follow the rules (i.e. I am not a sheep of TCI). I am more the kid they want to lock in the closet because I do my own thing -- ALWAYS. If it doesn't feel right or something is hinky or the facts just don't add up, I question. That is how I ended up finding Dr. Heffez and Dr. Di. I diagnosed myself and then just found a couple doctors who thought outside the box. Being a free thinker is what led me to Endoscopic Decompression rather than the standard cave-man approach offered by most of the Chiari docs. And that same attitude of defiance, of refusing to believe that I have to live with this broken pain-filled body, is what led me to take a strange pill handed to me by a friend. (Well, that and perhaps the hand of God.) Doctors would scoff and mock me, they usually do, but I am in charge of my own destiny and was pleasantly surprised by how many of you were too.

I will start week three on Sat. My trial is almost finished. At the end of my trial, I will give my review and name the supplement. I am extremely analytical and what I don't want to do is give false facts or offer false hope. However, this product appears to be the real deal. Today was horribly overcast and rainy, very conducive of migraines for me. Well, no migraine today! My foot is still doing wonderfully. I am sleeping so much better and waking up refreshed, my sleep is filled with dreams I can remember (this means lots of REM sleep!) and I feel just a basic wellness. I offered my body as guinea pig. Please be patient. I promise I am not keeping it secret, just trying to be accurate. I am trying to figure out how to even get it to y'all.

Lori

Un-Freaking Real!!

2010-03-23T15:23:00.000-07:00

Ok, I am two weeks into my supplement trial and I noticed yesterday that I couldn't feel my foot unless I really concentrated! Now I know what you are thinking; "Oh Lori, how horrible!". But you are wrong. It is a glorious development! I have had peripheral neuropathy in my left foot for years. I always feel my foot -- ALWAYS! It drives me mad! It keeps me from sleeping! Ugh!! This supplement has done for me what the neurologist at the Cleveland Clinic could not; it gave me relief from my neuropathy! Amazing grace, how sweet the sound...

I have been bombarded by requests for the name of the supplement. It is not sold in stores. The pharmaceutical companies do not want this product on the market. They can't make money on it :) Finally, something that can help our community which suffers so greatly and is offered such little hope. There is already testimonials in regards to MS, migraines/chronic headaches, chronic pain, fibromyalgia, and neuropathy. A side effect seems to be weight loss!! HELLO!! Most of the meds the docs have me on have far less desirable side effects, lol!

The singer (my friend who introduced me to the supplement; I call him this because he is the singer of a band :) is being flown by the CEO to CA to have a private meeting with the creators of the supplement. It is backed by some pretty impressive people. The singer has graciously offered to take whatever questions I have to the big wigs and bring back the answers. I am going to go ahead and extend that offer to my Chiari family. What would you like to know? Tell me your story. I will forward everyone's story to the singer and he can take them with him to CA. He can show them the incredible need our community has. We can have a voice in revolutionary, all-natural healthcare that will change our lives forever! I may sound a little overzealous here (or perhaps just plain nuts) but I have tried it myself and I have noticed the changes in my body! I am one of you. I have been where you are and felt what you feel. I believe this product has changed my life and now I am going to change your lives! The singer blessed me and now I want to bless all of you!

SEND ME YOUR STORIES! TELL THE SUPPLEMENTS CREATORS YOUR STORIES OF PAIN AND ALL OF THE MAN-MADE POISON THAT THE DOCTORS HAVE PUT YOU ON THAT ONLY MADE YOU FEEL LIKE CRAP!! Just a paragraph of two, please. You can send them to me personally via my email which is in the profile or you can put it in the comments. I want to send as many stories as possible! He leaves at the end of this week, so please hurry!

God bless :)
Lori

Coincidence?

2010-03-17T06:32:00.000-07:00

Ok, not really sure if there is a link but my sinus infection is almost completely cleared up. I am still blowing my nose like crazy BUT I can breathe through both sides. That hasn't happened in 3 months! Hard to believe it is the supplement already, it has only been four days, but it is the only thing I am doing differently. I was told that it eliminated inflammation (sinus' were swollen almost shut). This is pretty exciting to me! We all know, as Chiarians that swelling is a part of the bargain. Especially if you have other conditions related to the ACM such as POTS. I happen to have Sjogrens as well and am eager to see if this helps my joints.

And the watch continues...

New Breakthrough in Anti-Aging help for Chiari Peeps Too?!?

2010-03-15T08:05:00.000-07:00

Ok, so I was visiting a friend down in Indy when he turned me on to a fairly new supplement. It has been featured on main stream television and uses five natural ingredients combined to produce a powerful pill that restores cells back to the health they enjoyed as a newborn! This is a pretty big claim but it is currently being backed up by research in 14 major universities studying this pill. My friend gave me a bottle to try for a month. According to him, it helps with inflammation. He discovered the pill whilst trying to help his parents; his mom has MS and his dad has a brain tumor. He swears it has helped them both and countless others. I am very excited by the research. Although its original use is anti-aging, it is possible that this could help with our Chiari. For instance, I still have migraines and peripheral neuropathy in my foot. It has already helped his friends who have headaches. What if it gets rid of the tingling in my foot?!? I am uber excited to be your Guinea Pig. I am on day two. As the month progresses, I will keep you updated on any progress.

FYI, I have had a sinus infection for 3 months now - cannot shake it. I have been on every anti-biotic and nothing has worked. My doctor said my next stop is the ENT. I am eager to see if this pill can help with the inflammation in my sinuses.

Stay tuned...

Exciting Decision Reached!

2010-02-22T08:43:00.000-08:00

I just have to share my exciting news with everyone! A life altering decision has been reached. I will be pursuing further education after my imminent graduation in May. I will graduate with High Honors and a Bach. in Business Administration specializing in Human Resources. However, this is not my passion. I have decided to pursue either a BS in nursing or a master's. There are accelerated programs for both. The BS would take about a year and a half. The master's would take three. I have even thought about applying to Yale's Graduate Entry Prespecialty in Nursing (GEPN) program. This results in a master's degree in three years of round the clock study. I am so excited!! If I don't choose Yale, then I will go to one of two universities in Indiana that offer accelerated Bach degrees in nursing.

Anyway, my point is that I am going to go into the medical profession because it has always been my passion and because I have personally experienced the profession from a patients point of view. I have seen what a great RN can do for patient satisfaction and care.

I am researching more but I think this is my path. Maybe the ten years of pain and suffering was not for naught. Maybe I will become a nurse who works with Chiari patients. I would have to work for Dr. Di or Luciano at the Cleveland Clinic though since the rest of the Chiari docs and I do not see eye to eye (zipperhead vs. endoscopic).

Wish me luck!! I could use the support. I will keep you updated on my progress.

My Vanderbilt Experience

2010-01-20T06:04:00.000-08:00

First, I would like to start with how much Nashville impressed me. I loved it there! Everyone was very friendly and the city, itself, was beautiful. There are so many active people there! I couldn't believe all the walkers and joggers. We saw the Parthenon whilst there. It was amazing! I'm sort of a geek that way, I guess. I loved the history and culture, never mind the 40 foot statue of the Greek Goddess in gilded gold :)

Ok, on to my hospital experience... Vanderbilt, as a hospital, was pretty run down looking. It was definitely no Cleveland Clinic. The biggest difference between the two was that at CC, they have red coats. Red coats are literally customer service/guides in red coats who stand around in various parts of the hospital. You can walk up to any one of them and ask for help and they will help you; whether it be guiding you to your next appointment (very easy to get lost in the giant hospitals) or getting you a wheelchair, etc. These folks would have been helpful during our visit at Vanderbilt. That was probably the biggest irritation we had.

My first appointment involved a blood volume test. This test was fascinating to me. They developed the test, from what I can understand, specifically for people with POTS. Anyway, they take a vile of blood as a control then they inject you with this radio active stuff. Then, at 6 min. intervals, they draw out a vile of blood. I can't even tell you how much they take all together, but it was a lot! Oh, I forgot the best part, you have to drink this awful salty crap so that the radioactive stuff doesn't collect in your thyroid and kill it. Mine doesn't really work all that well anyway (autoimmune disease killed it) but just to be safe and protect whatever is functioning, I had to drink it twice a day for three days. Yuck! Nothing covered up that taste :( The nurse was super cool though. She let us stay in that room and sleep until our next appointment. We had drove all night and slept an hour or so in the parking garage. We were tired!

My second appointment of the day was a treadmill test. I never realized how hard those were! They make you stick a tube in your mouth to measure oxygen and then they plug your nose. The treadmill incline and they speed it up periodically. Mind you, I hadn't taken my Pindolol (beta blocker) in three days so my heart was racing! That tuckered me out. This was my last test for the first day. Afterwords, we went to our hotel room. We stayed at the Millennium Maxwell which was really comfortable and fairly cheap. My only complaint was that the bath tub flooded when you took a shower. Later that night we ate Jimmy Johns (YUMMY) and saw the Parthenon (a must see if you have never been). The Parthenon is the only exact replica of the original Greek Parthenon. Beautiful.

The next day, I had a Q-Sart (sp??) test. This was a very uncomfortable test. They sand paper a spot on your arm and two places on your leg and one on your foot. Then they wrap what looks to be a weird Velcro watch around those spots and then they circulate this horrible liquid underneath the weird looking watch head. Let me tell you what, it hurts!! It burns and stings so bad that I thought I would go mad! It is like a thousand bees stinging you on top of the worst case of poison ivy you've ever had! It is meant to induce and measure your body's ability to sweat. The results never did come in on this test so I will have to update later.

The final test before doc was the ANF (Autonomic Nervous Function) test. It was very simple. They give you an EKG and then they test your blood pressure and heart rate reaction to blowing against resistance. They also take your blood while at rest and after standing up. They make you take deep breathes for so long and monitor your reaction to that as well. Then they make you go from lying down to standing up and measure the difference (same as they do for the tilt table).

Finally, I saw Dr. Raj. Well, actually I saw another doctor first. He sent her in because he was held, up but she was very thorough and I really liked her. She explained that what they found over the past few days is that yes, I have POTS. My cardiologist laughed POTS off and insisted I had Inappropriate Sinus Tachycardia (IST). Doc said there is no way that is the case because at rest my heart rate is normal. Anyway, the biggest telling piece of evidence they received from the tests besides the POTS (which the ANF proved because when I went from lying to standing, my heart rate jumped 30+ beats) is that I have slightly low blood volume and moderately low red blood cells. Low blood volume is causal for some POTS patients. So, now we are working on finding out why I am anemic.

Oh, even cooler is that I volunteered for a genetic study. They took my DNA and will use it for research into the disease. I thought that was just the coolest! I told the doctor that if they ever cloned me to let me know so I can drop of the kids to my clone and go on vacation :)

Well, I will update when something new develops.

God bless!

Vanderbilt Dysautonomia Clinic

2010-01-11T08:08:00.001-08:00

Well, tomorrow I am off to Nashville, TN. They have one of the only Dysautonomia clinics in the country. For those of you who do not know what this means, Dysautonomia is the dysfunction of the Autonomic Nervous System (ANS). The ANS controls all the bodily functions that do not require conscious thought, such as heart rate and blood pressure and digestion. This is very common in ACM patients because the cerebeller tonsils crush the brain stem in Chiari.

I have been diagnosed with Inappropriate Sinus Tachycardia (IST), POTS, and slow motility in digestive track. I can't really exercise or take a lot of stimulus. My heart races if I watch an action movie, for cripes sake, and that is on heart pills!! I want to know if there is a medical reason other than Chiari. Perhaps there is a better treatment out there than the 6 different pills I take a day just to function like normal folk. I know a lot of you know what I mean. Chiari crushes the brain stem which is the keeper of all nervous system function. I still have peripheral neuropathy in my foot. Most likely, that will never go away. I would just like to be able to go on a walk without running out of breathe and feeling like my heart is going to beat out of my chest! I saw Avatar a couple of weeks ago. (Great movie, by the way.) I had to take a Xanex to watch it because the action excites my heart and sends it into what idiot doctors said for years was a panic attack. Man I am so glad I am past that stage of diagnosis!! If one more doctor told me that I was just a hysterical woman on her period and that I just needed to calm down while my heart rate was 180 from standing up, I would be typing this from prison -- LOL!

So anyway, I will write about my experience at Vanderbilt when I get back from TN. Wish me luck :)

Oh, and PS, I have had this appointment for over a year! That is how sought after they are and how difficult it is to get in. I have high hopes they will be able to help me. My lips to God's ears.

Knowledge Is Power!

2009-10-26T08:33:00.000-07:00

I have a very important announcement to make regarding ACM education. I received a letter in the mail from the Cleveland Clinic inviting me to an awareness program designed to educate and inspire physicians and healthcare providers, patients, their friends and family, and the public. The letter is from Mark Luciano, MD, PhD. He was not my doctor but I think he is Dr. Di's boss. Anyway, his topic is "Are Children Just Little Adults". It doesn't mention any other speakers but it should be an interesting lecture. I would love to go but cannot drive myself thanks to ACM. My brain cannot process heavy traffic :( I really wish I could be there. This is fantastic because it not only brings about Chiari awareness, but also about the endoscopic decompression option so few Chiarians and doctors know about. Let's all send positive thoughts, well wishes, and prayers to Dr. Luciano and the awareness program. Let it be a phenomenal success!

Update On Health and Makeover

2009-10-12T09:05:00.000-07:00

Tomorrow will be six weeks since my Extreme-Lori-Makeover and I am so very happy with the results. The Anesthesiologist decided not to turn me over during the procedure due to my neck and hyper-extension. I argued that I hyper-extend all the time and really the only thing I have not done purposely yet is ride the Tilt-A-Whirl (my all time fav ride!) even though Dr. Di said that after a year nothing was off limits. Dr. Youn, my plastic surgeon, convinced me he could do what he needed to without flipping me so I hesitantly backed down -- like I had a choice. The first three days I cursed my doctor and my decision. After they took out the drainage tubes, I felt instantly better! After that, I turned a corner in recovery. I look fabulous, if I do say so myself!

My health is good. I still have occasional peripheral neuropathy in my left foot that can span my entire leg. My Chiari headaches are all most non-existent. I still have bathroom issues. Just a reminder for those who don't know, I have gastroparesis, GERD, swallowing problems with choking and pain, and slow motility as well as all the complications that come along with it (trying to keep this family friendly here). Folks take their bodily functions for granted! I wish I never had to talk about it or think about it again. I wish my body just did what it was designed to do.

OK, I'm done whining. My new gastro doc did a test where I swallow 25 of these little radioactive rings and then periodic x-rays are taken during the following week until I have passed all the rings. Lovely, I know, but extremely important! Why did no one do this test before? I liked him the instant he suggested it. After 5 days, I had 5 left but they were at the "finish line". The moral of this icky story is that my motility isn't that bad!! It is all in the "finish line"!! Hallelujah! That is fantastic news! I went out an bought new clothes to celebrate! Girl thing. Anyway, I am taking Miralax everyday. My doc said no caffeine because it is a diuretic and it takes the water out of your colon which is bad for someone like me. The morning is when I have my one cup before dealing with my children, one of which is a teenager, before they go to school. He didn't care it was only one lousy cup of coffee and told me to stop. I did it one day, almost killed my children, and now I drink my coffee with Miralax in it. Compromise :) But I'm not admitting it to him. What is that old saying, "what you don't know..." I know, I know -- good patients shouldn't withhold information but sometimes quality of life trumps comfort and the quality of my life would go way down if I was sitting in prison for killing my children in a haze of caffeine-free sleep deprivation. I am waiting to hear from his office about what I do next.

Sooooo Excited!!!

2009-08-24T16:14:00.000-07:00

Just thought I would add a little update to the blog. I am having a "mommy makeover" on Sept. 1! For those of you unfamiliar with the term, it is a set of plastic surgery procedures that help reverse a little of the damage the kiddies have done to your body. In my case, I am having a breast augmentation, a mini-tummy tuck, and liposuction on my saddlebags, upper stomach and hips! YAY ME!!

So for those of you who are at that point where you just don't feel like you will ever be normal, it is possible! It has been one year and I don't give it much thought at all. Sure I still have issues from the Chiari, but nothing that brings me down. Life is too short to lie around on a couch and watch the world go on without you. I did that for way too long. Now, I'm living my own life. I am a mother and a wife to my family, not a burden to them.

I want you all to know that last year I was having brain surgery; that is how miserable my life had become. Now, a year later, I am having elective surgury like a normal woman because that is how amazing my life has become!!

I would appreciate any good thoughts or prayers offered as I think and pray for you all.

God Bless!

Here we go again!

2009-07-06T07:55:00.000-07:00

I just wanted to update everyone on the latest and greatest piece of crap I am dealing with... I have just been diagnosed with Sjogren's Disease. This is an autoimmune disease that attacks the mucous producing glands -- mainly the tear ducts and the salivary glands. The disease can also be systemic so I had to give half my blood for about 15-20 different tests involving autoimmune antibodies and organs. I am working on a disease or symptom for every letter of the alphabet. Just as a reminder, I suffer from Hashimoto's Thyroiditis (autoimmune), PCOS (autoimmune), Arnold Chiari Malformation 1 and now Sjogren's.

What led me to Sjogren's...my eyes. They were itchy, burning, crazy madness. Spooning my eyes out to run them under tap water became a viable option. I went to an allergist after a couple of years of allergy drops that only worked somewhat and she said that, since it is mostly only one eye, it is probably not allergies. That got me thinking. I made an appointment with an eye doctor and he did a few wierd tests and, wahlah!, a new diagnosis. The eye doc told me to see a rheumatologist and he confirmed. I will update more when I know more.

UPDATE...

2009-04-28T02:49:00.000-07:00

Hey all, happy spring! It has been four months since I wrote on here and I think it is time for an update. I see on here that people do visit so I should give y'all something new to read.

I am doing very well. What is left of my Chiari issues are much more manageable compared to a year ago. The crushing back of the skull headaches are pretty much gone. I think I have had maybe two or three in the past 6 months. I still have the peripheral neuropathy in my left foot and sometimes leg. It comes and goes. Very strange. The back of my throat still has numb parts to it causing me to choke on liquids if I am not careful. This one really stinks. I am always choking on my drinks. I have to sort of let the liquid accumulate in the front of my mouth, feel it out if you will, before I swallow. I still have hand tremors although I think they may be a little less pronounce. Constipation is still the bane of my existence. I currently drink prune juice like a 90 year old. It helps a little. My shoulders and neck still get very sore and cause me migraines. My hubby massages them every day for me. He is so good to me :) . The Reynaulds is still there as well as the tachycardia, but I believe I addressed that in the last post. I take a beta blocker for my sympathetic nervous system malfunction and it seems to do the trick.

I have a new diagnosis, chronic dry eyes. Fascinating story, at least to me, you see I have had the worse itchy eyes the past couple of years. They have been so maddening that scooping them out with a spoon and scrubbing them down with bleach had become a real option. Every year is worse, and this year I couldn't take it. I went to an allergist and she said because it is really only one eye (the right eye was severe), it wasn't allergies. I had never thought of that. They itched something fierce and I thought that always meant allergies. Anyway, I went to the eye doc and he did a few tests on my eyes and said I had dry patches on my corneas and diagnosed me with chronic dry eyes. He gave me some drops to try. First one worked like a charm! Amazing, the itch is gone!

I thought about taking another picture of my scar, but honestly you cannot see it. My hair covers it completely. The only way I know it is there, is the indentation where the scar would be.

My life has definitely changed for the better since the surgery. It will be a year in June and I am glad I did it. I am a full-time college student with a 4.0 GPA so far. I am looking for a job (but where I live, the pickings are slim). Oh, I almost forgot the most important part, I am much calmer. I handle stress better than I did. I think this is a direct result of the lack of headaches. I was in such a deluge of constant pain. Headaches everyday. It wears you down. You just don't have the patience for noise (ie kids). So now I spend a lot of time trying to repair the damage of the last decade on my children's and my relationships. We are definitely a lot closer now.

Well, I feel like crap. My husband decided to bring home a nasty bug to me. He is so thoughtful. I want to go back to bed now.

Thanks for reading my journey to health.

God bless you all,
Lori

Merry Christmas!!

2008-12-26T10:24:00.000-08:00

A little late I know but the season lasts for at least another week. I had an awesome Christmas even though my husband just got laid off a week ago and I have been jobless for over a year now. Every hurdle is a learning opportunity and a gift. That is how we are choosing to look at it. He is thinking about going back to school. I start back to school Jan. 5. Luckily, we had finished Christmas shopping before we knew and the kids were able to get what they desired most. Everyone was happy and it was a peaceful day which was nice. Two years ago we lost a baby right before xmas and last year I was pregnant for the first time since losing Gabe (our first baby together) only to lose that pregnancy on New Years day. So it was nice to not have trauma this holiday season.

I have been diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and Inappropriate Sinus Tachycardia (IST). The cardiologist tried me on Midodrine which works by compressing your blood vessels and keeping your blood from pooling into your legs and such. It vastly improved my Reynaulds but raised my blood pressure too much so they discontinued that drug and put me back on Pindolol which is a beta blocker. It slows my heart too much I think (I did cardio and my heart rate was only 66 and I was very dizzy and nauseous). I was on this years ago. We will have to see what the cardiologist has to say. At least I know why my heart does what it does.

I need to address a question from Alax. First, I apologize for not answering sooner. That goes to out to all. I am the worst at checking this blog. I just get so busy, life goes on ya know. Anyway, addressing the question on how much hair does Di remove, I simply can't remember. Sorry. I do know that after meeting two of his other patients for lunch at the CC, my hair had been shaved the most. They had only a very small patch missing and I had a good 3-4 inches of hair gone. I think someone was talking while shaving and OOPSY DAISY'ED. But, I had the better stitch work done on the scar so it was a give-and-take. Maybe it is because I have curly hair which is harder to judge where it begins and ends. If you have long hair you will not have a problem hiding it. I find it harder since it is growing out. Again, due to the curls, it makes it frizzy underneath. My hairdresser mentioned it was like the hair cuts in the 80's when the girls used to shave the back of their hair. I remember that. I figure if I go for the peacock front and the shaved back, I will be a regular Valley Girl! How sexy!

OMG, I chuckled when I read that Di whipped out the napkin and borrowed a pen. That man is an absolute HOOT! Please let me know how it goes in January. If I can answer any questions until then I will. I promise to check the site more frequently.

God Bless All,
Lori

New Hope...

2008-11-19T11:28:00.000-08:00

Looks like I'm still getting hits so I had better update. The MRI's on my kids came back normal, which doesn't surprise me because mine always did as well. The important part was getting the films for myself. I looked at them and my youngest looks like she has plenty of room but my oldest looks crowded so I will be watching her. Quite frankly I am adept at measuring for myself but the MRI is of such poor quality it is hard to identify the two bones I need as reference points to draw the line and see what's hanging below.

I still have headaches they come in waves. I just got over a two week headache and am feeling pretty good for the past 5 days. My biggest complaints are headache and fatigue (along with the rapid heart rate problem that comes and goes). If I could get rid of these issues I would be right as rain. Anyway, I was sent to a spine doc at CC to see if Tarlov cyst was the prob. Nope. So I researched on my own (this is how I solve all of my own medical problems) and I came across Dysautonomia. I think I found my needle. I read that POTS is heavily associated with Chiari. So, I learned how to tell if you have the condition and I tested myself. It fits!! There is no cure but they can help with the symptoms by slowing your heart rate and stabilizing your blood pressure. The current theory is that dysautonomia is caused by brain stem compression. HELLOOOO!! I am getting a Tilt Table Test Dec. 2. I am a little concerned that I will be going through a good span and nothing will happen. Isn't that awful?!? I just want it to fully represent what I go through more days than not. I did wear an event monitor for a week. It was supposed to be for a month but I am very allergic to sticky tape, even their hypoallergenic ones. Will let y'all know what I find out.

Good Health and Happy Holidays to All!

MRI's for the kids...

2008-10-05T09:20:00.000-07:00

and they looked pretty normal to me (I am an expert after all! :-). I received a card in the mail for my eldest saying it was read as normal, still waiting on the youngest daughter's results. Both kids sat through the test fine. My NS said he would look at the films if I wanted him to, which I probably do. I was worried about them because the youngest has had constant stomach aches and headaches for years. Doctor's said it was acid reflux and put her on prevacid which did nothing. Finally I figured out that maybe she didn't have enough good bacteria in her digestive track thanks to years of antibiotics from constant infections as a baby. I bought some probiotics at the health food store and it works pretty well. Still wanted to check it out though since I read that Chiari presents in children as headaches and stomach aches. My eldest has horrible headaches and has had these weird passing out attacks. Not sure what they are since I have never witnessed them. I don't know if they are drop attacks or what since I have never had these. Anyway, the Neurologist (whom I really like) said that if the MRI's turned out OK he may consider testing her for seizures. Weird. A couple of Neurologists wanted to test me for seizures but I never went. The pediatric Neuro also gave her migraine meds to try for her headaches. We will see....

Monthly Update

2008-09-22T15:28:00.000-07:00

So I went to see Di last Wednesday. I had my 3 month MRI done right before the appointment. Di showed my husband and I how beautiful the flow is and said it couldn't be more perfect. You could actually see all this room behind the cerebellum full of wonderful beautiful spinal fluid. Neat. Then we went into the exam room and he answered all our questions. He was running behind but didn't rush us at all. Did I mention how much I love this man?! With the flow now flowing I asked why my left leg was tingly and why my heart is starting its racing crap again. (By the way, those are the only symptoms left with the exception of an occasional headache. WooHoo!!) He said he did not know but would help me. He wanted me to resend my lumbar MRIs (said he never got them in the first place?!?) and he would check for Tethered Cord, but he didn't think he would find it. Then I asked him if maybe it was the Tarlov Cyst noted on my lumbar MRI radiology report. He said that would definitely be a probability for my leg and he would look at its location on the films once I send them. I sent them on Friday and he said he would let me know within one week of receiving them. So, I wait. At least there is hope for my leg!! It's freakin' driving me crazy!

Anyway, while I was waiting on Di, I was standing in the hall talking to another of his patients that I have been in contact with since before my surgery. (We planned the rendezvous. She is 3 months out too.) It was the first time we had met face to face. Her appointment was before mine, so she and her hubby waited for us and we all went to lunch in one of the hundred or so cafeterias at CC. While we were there, we met up with another of Di's "victims" who was one month out. Her hubby was with her as well, so you can imagine the 6 of us yackin' it up about all the negligent doctors and ignorant nurses we have run across along the way, all the while surrounded by the very wolves we were insulting.

Two of us had a horrible hospital stay at CC. Thank the stars that I only had to stay one night! The other poor girl was there for five days! We both had trouble getting our pain meds or pretty much any attention at all from our assigned nurses. I honestly do not know whether they were overworked or just crappy at their job. I don't care. I'm the one in the hospital bed! I'm the one with a hole in my head! I keep meaning to write CC about my stay, just keep forgetting. Shame on me. Another lady from Florida that we have been in contact with through WACMA also flew in that afternoon for her first meeting with Di but hubby and I had to get back to the kiddies so we weren't able to meet her.

Funny side note on Di: The man always pulls out a brown paper towel from the dispenser, then asks if he can borrow a pen and draws you a pic of whatever it is you are there for. We compared notes and laughed when we realized that, here's this celebrated (more than likely well-to-do) Neurosurgeon who doesn't carry around paper (or even leave a pad in each room) or own a pen?!? We all decided that during our next check up with Di, we would each buy him a tablet (something cutesy like High School Musical) and a pack of Bic pens as a thank-you/gag gift. Maybe you have to know him for that to be funny but I wouldn't have it any other way. He is just a sweetheart.

I'll blog again when I know something new. Hope your pain free!

Catching Up

2008-08-19T06:44:00.000-07:00

It has been awhile and a lot has happened so I am going to try to play catch up. Last Tuesday night I was watching TV and saw this medical mysteries show on TLC (love TLC!) and the first one I nailed within five minutes. It was Hashimoto's Thyroiditis. I recognized the symptoms instantly so my curiosity was peaked. There are two diagnoses per episode. The next was headache related. Turned out the lady had a CSF leak. Well, as we all know, CSF leak is a complication of PFD. She had been diagnosed with chronic sinusitis due to the pressure she was describing and the clear fluid that continually dripped out her nostrils which her doctor had assumed was post nasal drip. Turned out to be spinal fluid. (I had had post nasal drip for a few days and terrible sinus pressure. The antibiotics that I had been prescribed for sinusitis weren't working.) The headache she described was just like the ones I have been having. HMMMM. Then, when it was over, I turned the TV to a medical mysteries show on prime-time. They featured a story that, once again, I got within about 1-2 minutes. The guy had Chiari. I don't know about you, but I believe in God's intervention. Maybe I was meant to see these shows. Or maybe I am reading way too much into them.

My husband works two jobs and came home from job #2 around 11:00pm. I told him about the shows and that I was pretty much convinced that I had a CSF leak. My headache was almost unbearable and no amount of pain reliever was working. So hubby took me to a hospital an hour away to have me checked out. I had an awsome doctor. He wasn't dead behind the eyes like most. He seemed genuinely interested in what I was saying. (A part of me wonders if he would have been like every other doctor I encountered before surgery if I hadn't had brain surgery. Maybe now I am more interested and have a scar to back up my story of pain and illness. Maybe now I am more believable.) He ran a CT scan just to be sure. The scan came back fine. He said he couldn't rule out CSF leak but nothing major was going on and there was nothing to indicate my head would blow up in the near future. He gave me two Vicodin (however the heck you spell it) and told me to make an appointment with Dr. Di which I did the next morning. The amazing thing is that the Vicodin worked. So now I am wondering if maybe I had a rebound headache and I needed something new in my pain relief arsenal.

I have had one migraine since and am currently pain free. My sinus' are currently draining and I am feeling much better. Maybe the antibiotics just needed longer to work than I gave them. I cancelled Di. I have to go for my three month MRI and check in a month anyway. I had a legitimate concern so I am not ashamed like I used to be when I thought that I was just a hypochondriac psychotic mess (I would like to thank all the medical jackasses that convinced me this was true). I am feeling better now and that is all that matters.

My hubby and I are planning a romantic weekend getaway. He has worked 2-3 jobs for over a year now and I have been ill for a decade. We need quality time without kids! We are going to the last place that I can remember truly being relaxed and happy. We are going to Chicago, to the Navy Pier. We are going to take a boat ride on Lake Michigan. I want to make it a dinner cruise. They have fireworks every Saturday off the pier set to music. I love fireworks! We are going to stay at the hotel we stayed at last time we were there. It was gorgeous and has a delicious Irish Pub inside. Then on Sunday, we are planning on going to the Field Museum in Chicago. They have wonderful exhibits, from ancient Egypt to ancient man to ancient Earth. This is my kind of relaxation. I feel incredibly guilty (when do I not, I live in guilt) about not taking the kids to the museum. Hubby keeps trying to convince me that we need this alone time and the kids are fine. They would probably ruin it for me anyway. They would whine and complain about five minutes into it and I would feel rushed and stressed. I took them to the Atlanta aquarium last year on our way to Florida. I had read that they had a couple of Whale Sharks and I thought it would be so cool to see them up close. The kids hated it. They bitched the entire time about how boring it was and could we leave yet. It was really hard to enjoy myself and eventually we left frustrated and stressed out and it was such a disappointment. My dream is to go to Alaska and see the whales but I struggle with bringing the kids. I am leaning very heavily towards not. This is my dream! They would just ruin it for me and that would be a life long disappointment. I just wish they could enjoy themselves and marvel at nature the way I do. But they're kids and they're genetically engineered to be ungrateful. Is it selfish to leave them behind? Here comes the guilt. :(

AHHHHH!! Relief!!

2008-08-09T06:37:00.000-07:00

Hi all! Well I am feeling pretty fantastic. The steroids did their thing and some antibiotics (two to be exact) fought off some nasty infections caused by the steroids wrecking my immune system. I woke up this morning and BAM, I'm back baby! So nice. One of the infections was a sinus infection. I used to get most of my Chiari headaches in my face around my eyes so I at first thought that it was just the meningitis, which mimics Chiari, causing all the excruciating pressure. Then the pressure shifted to my cheekbones and upper teeth and I knew something was up. I honestly don't even know if I needed the second round of steroids, it could have been just an infection from the first round. Who knows and who cares. I am so happy that it is over.

I have had so many ask how I am and I want to say thank you. You are all so wonderfully sweet. It is so nice to know that someone is thinking of you and actually cares how you are. I spent 10 years in absolute misery from the pain and anxiety from the unknown. "What is wrong with me?" "Am I going to die from this before anyone can tell me what it is?" "Are the doctors right? Am I just mentally ill? Is this illness somatic?" I went to so many for help and the closest they came to caring was pity and those were the nice doctors. It just means so much that people can hear me now. People are listening now.

Speaking of listening, funny story.... I went to Urgent care because my doc was closed and I couldn't take the pressure in my face anymore and I was pretty sure I knew what it was now (sinus infection). So, I'm in there and the doc comes in and he's like 78 years old and probably went to medical school in a covered wagon. He starts asking questions about all my meds. He asks why I am on the Prednisone and I tell him Aseptic Meningitis. He asks who prescribed it and I tell him the Cleveland Clinic. He asks me why and I tell him I had a Posterior Fossa Decompression with a Laminectomy because of ACM1. He looked up over his glasses at me and questioned only the Laminectomy part then he asked me to touch my chin to my chest which I informed him I was told not to do. He asked who told me that and I told him my NS. He shut up and sat back down to write on my chart. He asked again why I had brain surgery and I told him, again, that I had ACM1 (even said the full name to help him out). It took him about 6 times to just write the ACM1 abbreviation. Basically, I think he just gave up trying to write and understand and just gave me the antibiotic without a fight. My hubby said he probably didn't want to mess with me since I knew more than him and I was saying big words. I guess to preface this story I should have said that I have seen this man a few times before in the past and he always fights me on everything. It is nice to be the smartest person in the room! ;)

God Bless!! I hope all have a pain free day.

Meningitis Sucks :(

2008-07-31T06:19:00.000-07:00

First, I would like to apologize to Amy who has been keeping track of the blog to see my progress. She emailed me to ask if I was OK because I hadn't written in a week. Really sweet to check on me so thank you Amy for your concern.

Well, my misery has progressed. Monday night, my headache hit an all time excruciating high. My hubby was so worried because I actually cried from the piercing pain shooting in between my eyes. I had already taken Motrin, Percocet, and a muscle relaxer. Nothing was touching it. Finally, JD (hubby) gave me a Vicodin and I passed out at around 2am.

When I got up I called CC (was supposed to actually go there, had an appt but had to cancel because I didn't want to drag the kids on a minimum 5 hour car ride) to tell them about my pain and ask for suggestions as to what I should do. Obviously, I no longer believed it was a sinus thing. This felt like a Chiari headache only different and I just felt so bad. Chopping my head off became a real option for consideration. Well, CC must have been busy because they didn't call back right away and my PCP closes at noon on Wednesdays so I got in to see him. He is usually pretty cool and he helped me right after the surgery with pain control, unlike my neurologist who won't even see me for anything to do with the surgery because he did not perform it and that is not his job. PCP was great, he gave me a shot of Stadol (?) and a 12 day course of steroids for the ongoing chronic inflammation he believed to be the culprit.

Later on that day, CC called. It was my favorite nurse who has been there 30 years and knows what the heck she is talking about, always helpful. Anyway, she agreed that it sounds like the meningitis never fully cleared. She said that some patients who develop this complication just need a little more time on the steroids and it is completely normal. She told me to elevate the head of my bed for 6 weeks and use alternating hot and cold packs on the back of my head. (Just a note to let you know that my wound looks and feels fabulous, no pain or swelling, but the nurse said that just because you can't physically see or feel it doesn't mean it is not there.) Then she called in some Valium (which everyone else got post op from surgery except me because my regular room nurse and care sucked so bad) to use as my muscle relaxer 3x per day. She also called in prescription strength Motrin (helps with the old stomach lining). I am to take 600mg 4x per day for 3 weeks, then 3x per day for 2 weeks, then 2x per day for 1 week and once per day for one week. Stepping down the dose saves you a rebound headache which can be its own demonic torture.

So, I have a full drug load and a good 6 weeks before I am done (on my knees in prayer!) and hopefully back to feeling the high that I felt the first couple of weeks after surgery. I'll let ya'll know how it goes. As of this morning, the headache is still there but I no longer feel like someone is trying to gouge my eyes out with a knife through the bridge of my nose. I guess that is progress.

Time Will Tell

2008-07-23T06:10:00.000-07:00

I didn't write yesterday to update on the headache situation because, guess what, I had a headache. It wasn't near the bruiser it has been. I got rid of it with a Darvocet but it still sucks that I had one. I am not sure if it is a residual fading headache from the past week of torture or a rebound from all the Motrin I've been sucking down or just a plain-jane allergy headache (allergies have been unforgiving here in Indiana this year and my nose has been running and I've been sneezing) or possibly a TMJ headache because of the location of pain and the fact that my jaw is really crunchy. I do not think it is Chiari related though.

Between the agonizing allergies and the intense headaches, I am not a happy camper. I guess I will have to wait till allergy season is over to truly tell where the pain is coming from, which is usually the end of September. August has always been the epitome of burning hell for me. I have eye allergies along with nasal allergies, the eye issue being the most severe. Before the steroids last week, I was contemplating popping my eyeballs out with a spoon and running them under tap water. They were so painful and swollen and the itch was maddening. I had tried everything from my script eye allergy drops to script allergy meds to Benadryl every night. Nothing ended my misery until the steroids. So, now that I am armed with this miraculous tid-bit of info, I will never go itchy again!!!

Well off to the beach with the kiddies! Hope everyone has a fantastic headache free day!!!

Good News!

2008-07-21T17:40:00.000-07:00

Well, I woke up this morning feeling so much better than yesterday. I still had a headache and felt a little flu-y but definitely an improvement. My husband almost took me to the E.R. last night because I thought my head would explode! I am so glad we didn't go! As the today wore on I started to feel worse. The flu-y stuff mostly passed, but the right side of my head really felt like I was having a stroke or something. The pain was through the entire right side of my head, heading down my neck through to my shoulder, down both the upper arm and upper right side of my back. I just kept thinking that there is only one thing that comes close to this excruciating pain, a migraine. So, on a whim of desperation, I tried an Axert (migraine med). Low and behold, within an hour, my scorching stabbing pain behind my eye was gone!! I so freakin' happy!! A couple hours after that I was loading the dishwasher and felt what can only be described as a large thick rubber band snap inside some muscle that runs through my shoulder and neck. Weird.

I cannot express my excitement at being pain free again. Maybe the steroids had worked and I didn't have meningitis anymore after all. Either that, or it ran its course (usually 7-10 days) and ended with a bang(migraine). We will have to wait and see what tomorrow holds.

Frustration

2008-07-20T06:46:00.000-07:00

I called the Cleveland Clinic late last week, after finishing the steroids, and told them it felt like the headache was coming back. They told me that it is probably a rebound headache from the steroids and I was supposed to take Motrin (3 every four hours) while tapering off of the steroids. The nurse finished by telling me to call on Monday and let her know either way how I feel. I asked her if she has ever heard of someone needing two packets of steroids and she said yes but really felt it was a rebound. Well, I am very versed in headaches and taking that much Motrin for any length of time will definitely lead to a rebound. However, from what I have researched and found on the Internet, steroids do not give rebounds. Actually they use steroids for rebounds so I am not sure she knows what she is talking about.

It is now Sunday and I am in some exquisite pain. I am pretty much couch ridden. I have to wait till tomorrow to call CC back and let that nurse know I feel like my head is going to explode off my shoulders. I would go to Urgent Care here in town, but I highly doubt they would do anything for me because they wouldn't want to step on another doctor's toes. All I can do now is just writhe in pain and wait it out until tomorrow morning. I am so agitated and frustrated. I keep getting a taste of what life is like for normal pain-free people and then, WHAM, I am back to contemplating taking a hammer and cracking open my skull just to get some relief from the pressure. :(

Damn my head hurts.

One Month Anniversary

2008-07-15T10:44:00.000-07:00

Well, yesterday was my one month surgical anniversary! I'm alive! Always good. I had a bitchin' headache yesterday but it was different than the Chiari headache or Meningitis headache. I believe it was a Rebound headache. The NS had me taking 3 Motrin every 4 hours to help with the swelling and pain of the Meningitis. I took it religiously for 2 days, then sporadically for 1 day, and nothing yesterday. They told me to make sure that I taper down or this would happen, but I never have been good at listening to others. So my punishment was pain and with a rebound you can't take anything or you will just perpetuate the headache. Irony really.

Today I am feeling much better. Still a shadow headache but all in all, pretty good. I think I will even mow a little later. I just got my medical bill from the surgery. Basically with surgeon costs, anesthesiologist costs, and Cleveland Clinic costs, it was a $53,000 surgery (remember I only stayed overnight). My portion is $0! I am so blessed to be insured.

Well, off to do the bills and budget. Lived off credit cards for about 3 years while I was sick and now we are paying the piper dearly but my family is intact and we all came out alive. I can't complain.

Feeling Much Better!

2008-07-11T07:53:00.000-07:00

Well, I have been on the steroids for one day. I woke up this morning and no longer felt like I had the flu. The pressure is still there in the front of my face, behind my eyes and nose, but it is gone from the back of my head. I have about 4 more days to go, but it is definitely nice to not feel like such crap! I am still nauseas though. :( Steroids are supposed to be an appetite enhancer but every time I eat I want to barf. I'm hungry!

I talked to a mother from the WACMA group this morning. She was asking about her daughter who has borderline Chiari but was told there is no blockage even though she appears to have classic symptoms. I just hate radiologists for being ignorant and talking about things they no nothing about and for neurologists who just read the radiologists report and take their word for gold instead of looking at the images themselves!! What a bunch of arrogant asses! Do you know how I found out I had Chiari? I researched my symptoms which matched up with MS (already tested for that because that is exactly what the doctors suspected I had, so instead of looking for a differential diagnosis they dismissed me as a hypochondriac with depression and psychological issues) and also Chiari. I tried to tell the neurologist at the time but he got mad and firmly told me that is not what I had because my MRI report did not mention I had it. I dropped it for a year or so, came back to it and researched it after every search engine mentioned it. I learned how to measure the herniation and measured it on the copy of the MRI I had on CD. I had an obvious 4mm herniation. Good Lord! I have no medical license or training and a few hours on the Internet and I can diagnose what all these A-Holes I pay a fortune to cannot!! Ignorance is inexcusable!

Be your own advocate!! Your life depends on it!!

Aseptic Meningitis! (Thank God!)

2008-07-10T06:59:00.000-07:00

Well, I have had a slight complication from the surgery. I started getting my old headaches back. I have been trying to control them using a combo of Motrin, Axert, Percocet, and Darvacet. It worked for a couple of days with only a mild shadow of the ache lingering. Then a couple of days ago it kicked back up again and I haven't been able to alleviate it since. I was a little depressed that I was back taking all my old pain killers and I was really bummed about the migraine med because I was sure the migraines were really the Chiari. My husband kept trying to remind me that it was too early to tell the full effectiveness of the surgery. Logically I knew that was true but darn it I had seen such a vast improvement on all my other pre-op symptoms it was hard not to feel disappointed. The nausea had returned with the headaches and I was unable to eat much more than plain bread again (had a lot of problem eating for the last ten years, everything made me want to barf). I lost 4 lbs in the course of a few days.

Anyway, I started to think something was odd about this particular headache when nothing seemed to alleviate it. With all those drugs, I should have been able to kill it, but all I did was just dull it a little.

I decided to call the Cleveland Clinic just to make sure it wasn't something I should be concerned about. Dr. Di's nurse told me that they needed to rule out a few things but it sounded like a classic case of Aseptic Meningitis which apparently is pretty common with the Posterior Fossa Decompression. It is different from the other forms of Meningitis in that it is rarely dangerous, just uncomfortable. The main symptoms are Chiari-type headaches (lots of pressure in the back of head and face), nausea, sore throat, low grade fever, muscle aches and more. She wanted me to come in but we live 3 hours away so she said to go and get a CT scan of my head to ensure it wasn't infection or bleeders. If the scan came back negative Dr. Di would call in a script for steroids to reduce the swelling. The scan did come back negative. I had to wait until this morning, but my hubby is now in town grabbing the script Di's office called in to our pharmacy.

Last night, I said a little prayer thanking God for the wonderful complication. Sounds weird to be thankful for a set back, but I really started thinking that I would have to live with the headaches for the rest of my life. The surgery had been a success in every other way so I wasn't sorry I did it but pain meds the rest of my life would have been a downer. Now, all I have to do is take a series of steroids and, according to the nurse, I should be pain free and hungry as hell! (Blessing for me. ;)

I am so so so blessed by God! Yeah I suffered for ten years undiagnosed and depressed from all the rejection and torment from the medical community, but I could have just as easily had MS or something incurable. I also learned a lot from my experience that perhaps I never would have had I not gone through the trial of illness. After He felt I had learned what I needed to, God gave me the gift of diagnosis and delivered me from my disease. Then, just when I thought that maybe I would have to find a way to accept the pain and all the pills that it involves until the day I die, He delivered me again with a simple explanation and a definite cure. A few days of pills and no more pain. Forever.

I love the poem "Footprints in the Sand". I hung onto that idea and it helped me get through the dark times of Chiari suffering. God has carried me most of my life and I am so thankful He is strong enough for the both of us.

Week 3

2008-07-05T08:15:00.000-07:00

Well, I'm finally caught up. As you can see, I finally got a new pic of the "wound" and I can write in present tense now. Yesterday was the 4th which is one of my favorite holidays. We had a cookout which wiped me out because of all the prep from house cleaning (which has been neglected due to two camps, brain surgery, and packing and planning a trip for the kids to Florida) to all the food. I drank a beer and some wine which was nice. Then I took a nap before going to the fireworks. I love the fireworks! They are so beautiful and they make me feel all patriotic inside. They remind me of the movie The Patriot with Mel Gibson at the end when they are in battle with the English and that big ole American Flag is waving on the field. The firework booms sound like the booms of the cannons in the midst of war. I hope everyone felt a little twinge of pride in our country even though we may disagree with the direction the hill-jack lunatic we were forced to put into power has taken us.

I wanted to add a few links that have been requested by people from my chiari group, WACMA. There is information on Arnold Chiari 1 Malformation and a chiari products for sale to help support our big brained community along with support from the people who understand the most, fellow Chiarians.

First, here is their link:

http://www.pressenter.com/~wacma/

Second is a link to the Cleveland Clinic's profile of their very own superstar Dr. Di:

http://my.clevelandclinic.org/staff_directory/8/Staff_7644.aspx

Note that he fellowshipped at Allegheny General Hospital which is were Dr. Jho works and I believe pioneered the Chiari Endoscopic Decompression Surgery.

I will add more links as I find them.

Week 2

2008-07-04T11:38:00.000-07:00

In week two, my husband went back to work half days. We both decided that I didn't need constant attention anymore (never really did). On Sunday, I did 5 loads of laundry because the kids were getting on a plane the following day to go to Florida for a week and spend time with my husband's mom. The dirty clothes pile had become an almost insurmountable mountain and I do not trust anyone to do the laundry my way. Did I mention I was a control freak? Anyway, that took a lot out of me. It was the most physical I had been since the surgery. Good thing I had the endoscopic type! Who has time to be bedridden for 3-4 weeks. Life goes on with or without you.

Monday, I spent the entire morning while my husband was at work getting the kids packed and prepared. This would be the first time they have ever traveled alone and only their third time on a plane! Scary for mom, thrilling for kids! My eldest needed to do some last minute shopping and we discovered that both their suitcases were broken. I was stressed and took it out on hubby a bit. By the time we reached the city with the airport, my neck hurt and I was cranky. It hurt to hold my head up for any length of time. Of course I had been doing it all for 6 hours with no rest. No wonder I was sore being only a week out of surgery. (There is no way this would have been possible if I had had the out dated version of decompression that Doctors are still selling because they are too lazy or too unskilled to come into the new millennium and follow their supposed creed of "do no harm".) Hubby wanted to help me so he took me to a department store and we found a small round soft pillow that fit perfectly under my neck and relieved the pressure. He made my lie on one of their display beds and test out about 15 pillows so that I could find the perfect one! He is such a sweetheart. We then took the kids out to eat and made our way to the airport. We watched our babies fly off into the clouds and I started to cry. I was so scared for them. What if they needed me and I couldn't be there? What if they were crying for their mommy? My husband guided me back to the van and reassured me that kids travel alone all the time and are given special treatment by the airline staff. (FYI, I talked to the kids that night and they squeezed each other's hands on take off. Other than that, they had a blast and I was the only one that cried! Silly mom!)

On Thursday, I found out that their grandma had to go into the hospital. The kids had to stay with whomever was available and that was the beginning of the end for me. Remember that whole control freak thing? Things got very stressful as I was a couple thousand miles away and helpless. I am not good at helpless. I was worried about my kids, my mother-in-law, my husband's grandfather (he was dying and they are very close) and my husband who was carrying a lot of his concern and stress silently. Saturday finally rolled around, the day the kids were scheduled to come home. The airport they were flying into was 2.5 hours away. We left early and went shopping at this really awesome mall. That was fun. Afterwards we went to Olive Garden to eat and it wasn't up to Olive Garden standards but was OK. On our way to the airport, we found out the flight was delayed by about 2 hours. Three phone calls and two more delays later, their return flight that was supposed to be arriving at 9:30 pm was going to be arriving at 2:00 am. Did I mention that this particular airport is extremely busy in a very rough city and one the the filthiest places I have ever been? So we screwed around in anyplace that was open to blow time. After everything closed, we went to the airport and relaxed in the van for a bit before going in. Once inside, we discovered that the area where they would be coming off the plane was gated off and closed. A "security guard", and I use that term very loosely, informed us that the gov't closes at 9:00 pm and we could go no further. I freaked out on her because my babies were told to stay in place until they saw us. How would they know what to do? It did all work out but it was a nightmare and probably aged me about 20 years. There is also more to the story, but I will keep that to myself. Some things are better left unsaid.

First Week

2008-07-01T08:31:00.000-07:00

The day after we arrived home I was pretty stiff. No more morphine really stunk! Other than that, it was uneventful.

The second day I ran a low grade fever, my heart was racing and felt like I had the flu. I felt awful and even began to panic a little thinking something must be wrong. My hubby called CC and they said that either I picked up a bug completely unrelated to the surgery or it was a reaction to the new muscle relaxers I was given, Roboxin. They told me to stop taking them and see. My hubby then called his mom because if anyone knew what to do, it is her. She has RSD, a chronic pain condition, and has more metal than organic material in her body thanks to a car accident that every doc she has seen over the years said she shouldn't have walked away from. She has had countless surgeries including I think three brain, so we thought she would be a good resource. Anyway, she asked about the meds I was on and how much I was taking. We told her about the two Darvocet every four hours and she said it sounded like I had narcotic poisoning. She has had it a few times in the past. I am small framed and that was too much for my system. She was right. I stopped taking them all together and just took Motrin and I felt much better. Thank's mom.

The rest of the week was uneventful, I had to take one pain killer at night to help with discomfort but that was going about the day using only Motrin and muscle relaxers. On Wednesday I scheduled an appt. with my PCP and got Percocet because the Darvocet made me uneasy after Monday's fiasco. By mid-week I was forgetting to take it easy. Occasionally my neck would remind me with a little twinge if I tilted my head wrong, but other than that I was beginning to feel fabulous. My energy was returning which I hadn't seen in a decade! How exciting!

Friday marked my one week anniversary and I took the pic on the blog. The wound felt tight and began to itch but other than that I was feeling pretty darn good. If I used to neck for two long it did ache deep inside and I would have to rest it on my neck pillow. It was hard to hold up for any real stretch of time. Even sitting without neck support took its toll but as long as I used my special pillow behind me, I could stay up and awake for hours.

Things I noticed that went away in weeks one:

Immediately after surgery, I woke up warm! I have Reynaud's and my hands and feet were usually frozen solid. That has only improved. I still occasionally get chilly, but my husband says it is nothing like it used to be before. If only for this reason alone, I am glad I had the surgery. I can't wait to see how I do in Indiana winters. Will I finally be able to go skiing with the kids?!?
My headaches have all but disappeared. I no longer get them with weather changes. I have had two though, but they were easily fixed with the Roboxin muscle relaxer. I now love those. ;)
My vision is clearing up. I am now able to read the TV screen from the couch. I don't blur over when standing up anymore, however I have had some POTS issues on two different occasions. Hopefully that will clear up with time.
Within two days of surgery, my numbness and tingling completely disappeared in my left foot and leg. The tingling was gone when I woke up, the only thing that stayed was twitching in my toes that lasted for a couple of days. It hasn't come back yet!
My muscle knots are just gone! I used to see a massage therapist for them. They were so bad and a source for my migraines. Dr. Di told us that muscle knots are caused by the Chiari and should go away as soon as he released the pressure and, wallah, he was right! By the way, it isn't just because I am taking daily muscle relaxers, I have been doing that for more than a year.
My tinnitus got better as well, but has not disappeared as of yet.

That was all in the first week following surgery. I find it amazing. A miracle from God via Dr. Di and his magical hands! I would name my son after him but I cannot pronounce his first name! :)

Flashback to Friday the 13th - Surgery Day

2008-06-26T07:39:00.000-07:00

I had to be at the hospital at 6am. Checking in took mere minutes and then I was sent back to be prepped. The anesthesiologist was a kind sweet caring man that I can not say enough about. He came in to talk to me after I changed into my lovely gown wear. I have special needs and we addressed them in a very dignified manner which I greatly appreciated. He spent whatever time I needed to explain and feel comfortable, very refreshing. Then I was given Versed (my request) and the next thing I remember is waking up in the PACU asking for a bed pan so I could pee. This is not the normal protacol. Usually they leave the catheter in until the next morning. Again, this was my request before we got the party started and I do contribute my ability to leave less than 24 hours later partly to the fact that I had to get up and use the facilities. The more you move, the sooner you feel better. So true.

Anyway, I was given Fentynal and Morphine in the PACU by the lovely and beautiful nurse Jill . (Wanna make sure I also shout out to Wendy who was my pre-op nurse and a lovely lady as well.) I had a wonderful time in the PACU for the couple hours or so I was there. I was doing so well, I got to skip Step Down which apparently is where patients head until they are doing well enough to go to a regular room.

So, I was off to my new room. Here is where it gets sticky. I was completely ignored by my new nurse, I think her name was Linda. This other nurse, who was only supposed to be there to do paper work or something, came into our room (all rooms are semi-private which means roomate :) ) I begged her to find my nurse because I wanted my pain meds. Then my roommate grabbed her for something else. Long story short, she ended up taking care of us and a few other people because our nurse couldn't bother to show up. My roommate's I.V. kept going off irritating the crap out of me. I started punching the nurse help button for someone to come in and shut it up. I got so angry that I demanded to speak with my so-called-nurse's supervisor who was very nice (of course she was, I was a disgruntled customer) and handled it all with professionalism and compassion. I got a new nurse and she was OK. Apparently, you have to ask for your drugs when you want them or you won't get them. I thought that was incredibly dumb because, as far as I know from a decade of chronic agony, the smart thing to do is stay on top of the pain. As most of you know, if the pain takes over it is hard to recover. So that is a word to the wise, ask for drugs!! The next morning brought breakfast which wasn't bad and hubby brought Starbucks and I was feeling good. A doc-not-my-own came in and saw me and I convinsed him to spring me. Wasn't really happy that I didn't get to see my doc. I wanted to talk to him about some things and this guy (a resident I think) said he had been there up until Dr. Di brought out the drill, which is pretty much the beginning, so of no use to me. Bummer. I put some makeup on, brushed my teeth, combed my hair and left at 11am on Saturday.

Hubby and I decided we wanted food before the 3.5 hr ride home so we stopped at a Buffalo Wild Wings and got some chow for the road. The ride home was uneventful. I called Sue, a friend that I met on the WACMA site who was having her surgery that following Tuesday with Dr. Di, to tell her how easy it was and to definitely not be scared. It was a breeze and I was going to sleep in my own bed the day after brain surgery. You can't beat that. I spent the rest of the trip trying to keep my husband awake because he hadn't had much sleep the night before. The kids were at camp and Grandma's, so we were lucky to have the time alone. The kids didn't come back until the following Thursday night so I had a lot of time to heal.

To sum it up, every thing went fabulously at first (during the critical parts) and everyone involved in my pre-op, surgery, and PACU care were the top of the line. I can not rave about them enough. The rest of my hospital stay sucked because my nurse was a twit and failed miserably at taking care of my needs. I'm not trying to whine or be self-absorbed, but I literally was there for over 6 hours and I saw her once. That's BS. If they are that understaffed, they need to get a hold of a POOL and get some bodies in there. That suffering didn't last long though and now here I am, feeling fabulous, without a giant wicked scar down the entire back of my head and neck. By the time it is all said and done, people probably won't even be able to see the scar! My husband marbles at the skill of the closer and people I show say something to the effect of "that's brain surgery?!?" :) I love it. It is like Dr. Di fixed Mother Nature's OOPS and now I am the way I am meant to be -- just like everyone else -- alive!

June 25 2008 - 12 days post op

2008-06-25T13:59:00.000-07:00

Hello everyone! I have decided to write a blog to help clear up all of the questions I have received from my fellow Chiarians from the WACMA group. I have suffered from the effects of Chiari for 10 years, right after the back of my head bounced off a floor (long story, lets just say I was body slammed) though I have probably had it my whole life. My first experience was within that first month after the "head-bouncing" incident. I was at work, walking down a tiled hallway, and all of the sudden the floor tilted up and cocked to the side. It also turned colors. It was disturbing to say the least. After that, I started having all kinds of visual distortions along with auditory ones. I would be watching television and all the sudden I couldn't understand what they were saying! It was like they were speaking a completely different language! That scared me even more than the hallucinations! I became so frightened, I couldn't leave my house because the ground would appear uneven and unnatural. After about two years of hell, I got pregnant with my second daughter.
My pregnancy was horrible! All of my symptoms got worse and new ones appeared. I was told the entire time that I had anxiety and depression and was given all these meds to "calm me down". After I delivered my second daughter, my symptoms worsened (could have been some post baby blues) and I got an unrelenting three month headache from hell! All the while I was going to my doctor and begging for help. They tried to help but just couldn't find anything so they blamed it on the baby and stress and panic attacks. Very frustrating.

In January of 2001, I made a pact with God. I told God that I would go to the doctor one more time and if they found anything then I would continue to fight, but if they found nothing then I would end my life. I thought I was going insane. I made the appointment for that afternoon. I was barely able to walk into the office, I was so very sick. The NP walked in and I demanded she run a test for Thyroid. They had run that particular test before but it always came up "within range". (Don't get me started on my opinion of ranges!! They are BS!! Back then the range was up to 12, today that number has changed 2 times and is now down to 3!! My endocrinologist likes it at 1! Needless to say I was sick the whole time but the range was way off.) Anyway, she reluctantly ordered it and it finally came back out of range and I was treated for Hashimoto's Thyroiditis.

I know, I know, I am getting to the Chiari. Even after treatment for the thyroid issue, which they said did not cause my symptoms for the past two years and I still had to deal with my panic attacks and headaches and hallucinations, my symptoms got worse. A couple years after the first diagnoses, I was standing at line-up at the restaurant I worked at and I experienced what I can only describe as an electrical current that started in my left foot, up into and across my pelvis, and down my right leg. Then, both my feet got tingly to the point of pain. It drove me crazy to even let the sheets touch them! So again, off the the doctors (new doc though). They wanted to send me to a neurologist but before they could, BOOM, new job new insurance and back to the old doc. The old boy said I had probably broke both my feet and that he wouldn't even see me until I went and got an X-Ray of both feet to rule it out!! WHAT?!? I swear, doctors must smoke smack to get through med school and this dude was their dealer! Idiot. Needless to say, I never went. I didn't have the money to flush down the stool.

The foot thing went away after 9 months and the headaches were taking over my life. I was in so much pain and couldn't stay awake without sacrificing my humanity (aka insta-bitch). I had tinnitus (ringing in the ears), imbalance, IBS and other digestive issues, essential tremors in both hands, difficulty swallowing, eventually the foot thing returned, Reynaud's (bitter cold hands and feet), nausea, debilitating fatigue, blurred vision, word retrieval issues. probably a thousand other things, and lets not forget that excruciating headache. I asked my neuro if I had Chiari after seeing TCI's "Chiari Redefined". MS had already been eliminated and they were the only illnesses that kept coming up for all my symptoms. My neuro got upset because I was questioning his abilities as God, so I took things into my own hands. I contacted a doctor in Wisconsin who is a Chiari expert. He said that I had a "mild" Chiari of 4mm and that, based on my symptoms, surgery would benefit me. He proposed Chiari decompression with laminectomy. He would enter through a 6-8cm slash, cut through the dura and arachnoid space and burn my herniated cerebellar tonsils back into my skull and then sew up the dura using a patch from a cow's heart and then of course the 30 some-odd staples that will be impaled into my head! I looked at my hubby and said there has got to be a better way in the year 2008. It all sounded so barbaric really.

I researched and found a ladies story on the Internet with a pic that showed her "wound". She had gone to Dr. Di at the Cleveland Clinic. I made an appointment and he agreed to do the surgery. He does the decompression through a 2cm hole in the neck. The whole thing takes place on a TV screen. He took out the skull bone to make room for the tonsils - NO BRAIN BURNING - then he scored, or peeled back, the dura until he saw good spinal fluid flow using the Intra- Operative Doppler Ultrasound. Then he sewed up my tiny incision and that's it! I woke up and hung out in PACU feeling fabulous for a couple hours, no ICU, and then off to a regular room where I stayed overnight. I left the hospital less than 24 hours later. Easy Cheesy! I was told I could return to work in two weeks. My only restrictions were no lifting over 25lbs and hyper-extending my neck for the first 3 months and then no roller coasters or contact sports for the first year. That's it! After a year I am free to do whatever I like! (I love the Tilt-A-Whirl with my kids!)

If I hadn't found that ladies reference to Dr. Di and the Cleveland Clinic and Endoscopic Chiari Decompression I would have had my head hacked open like a watermelon, took my place in the land of zipperheads and probably still be in pain. I thank God every day for leading me on this path and now I would like to help lead other chiarians to a choice most don't know exists.