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.


Sharla said...

Thanks! This is really inspiring. I was diagnosed with Graves disease originally. Wonder if chiari messes with the endocrine system. You have a great sense of humor and I look forward to reading more about your journey. Thank you for sharing!

Lori said...

Thanks Sharla! Glad it was entertaining :) Actually I think I read somewhere or saw something about the doc at TCI saying they are investigating that very thing. Something about the spinal fluid flow crushing the Pituitary or something. Don't know for sure, but I had two healthy kids and no miscarriages before, and now we have lost three in a row. The docs can't explain it. We are kind of hoping since the surgery that we will be able to maintain a pregnancy if we so choose. Right now I am not sure because the three I lost were very painful for me.

Sharla said...

I'm so sorry to hear that. My 1st was a miscarriage and had a healthy girl after that. We haven't tried since my symptoms got bad - I was just too scared of the unknown. Miscarriages are extremely painful and I wish you all the best if you choose to try again.

Lori said...

I am so sorry for yours as well Sharla. Miscarriage is like death. It is the death of a dream, of hope, of the future. My first son had a heartbeat that we saw 3 times before the final ultrasound where he was still. That was my rough one. We had him cremated and buried him with a tree that we bought and could watch grow outside our window. His name was Gabriel.

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