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! :)
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