Friday, December 26, 2008

Merry Christmas!!

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,

Wednesday, November 19, 2008

New Hope...

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!

Sunday, October 5, 2008

MRI's for the kids...

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....

Monday, September 22, 2008

Monthly Update

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!

Tuesday, August 19, 2008

Catching Up

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. :(

Saturday, August 9, 2008

AHHHHH!! Relief!!

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.

Thursday, July 31, 2008

Meningitis Sucks :(

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.

Wednesday, July 23, 2008

Time Will Tell

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!!!

Monday, July 21, 2008

Good News!

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.

Sunday, July 20, 2008


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.

Tuesday, July 15, 2008

One Month Anniversary

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.

Friday, July 11, 2008

Feeling Much Better!

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!!

Thursday, July 10, 2008

Aseptic Meningitis! (Thank God!)

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.

Saturday, July 5, 2008

Week 3

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:

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

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.

Friday, July 4, 2008

Week 2

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.

Tuesday, July 1, 2008

First Week

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! :)

Thursday, June 26, 2008

Flashback to Friday the 13th - Surgery Day

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!

Wednesday, June 25, 2008

June 25 2008 - 12 days post op

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.
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