Chiari Connection International

Personal Stories

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Rochelle from Houston, TX Contact Me

My son Drew was diagnosed with Arnold Chiari Malformation 1 when he was 7 years old. Although he's probably had this brain disorder since birth, it wasn't discovered until he started having symptoms (following a soccer season full of head butting the ball) like frequent headaches, neck aches, pain in the back, shoulders, behind the knees, eyes, ears, wrists, vision problems, balance problems, motor skill problems, speech problems, trouble swallowing, choking, nausea, etc etc etc. Hence the Chiari slogan "Live Pain Free".

He underwent Chiari brain decompression surgery in May 2003 with an anticipated 3-5 day hospital stay. Instead he developed high pressure and a spinal fluid leak, chemical meningitis, was shunted to drain into his belly the extra spinal fluid that wasn't being absorbed by his brain, had a small brain hemorrhage when they inserted the shunt as well as bleeding during the decompression surgery, and developed hydrocephalus or "water on the brain" (due to the brain bleeds and meningitis). It turned into 4 weeks and 4 surgeries. During this hospital stay, we were warned of the danger of Drew hemorrhaging again whenever his shunt is removed because he hemorrhaged when they placed it.

His first surgery was a failure, and the MRIs showed he was more compressed after his decompression than he was before due to bone regrowth and extensive scar tissue. We knew he'd need another decompression, but we decided to wait until his symptoms worsened again or he developed a condition that many Chiarians develop called Syringomyelia. Drew's MRI in April 2005 showed the development of Syringomyelia (a syrinx is a spinal fluid filled cyst in the middle of the spinal cord which destroys the spinal cord, causes neurological pain, scoliosis, and eventually paralysis), so we went ahead with the second decompression to open up the back of his brain again to allow the spinal fluid to flow easier. During this second decompression, Drew developed a nasty Staph shunt infection and his shunt had to be removed, which resulted in a large intraventricular hemorrhage. Six weeks, 6 surgeries, and many scary moments later, he was discharged. He has now been diagnosed with a rare blood clotting disorder called Factor VII Deficiency, a connective tissue disorder called Ehlers Danlos Syndrome Type 3, and Arachnoiditis Obliterans which means the scar tissue in his brain is so extensive that his brainstem, cerebellum and dura are all meshed together and he will most likely require surgeries every couple of years to remove scar tissue buildup as the buildup blocks csf flow and increases his symptoms. He had 3 more surgeries in early 2006, and now has a VP shunt, a stent in his right lateral ventricle (that was blocked and didn't respond well to a fenestration), and a 4th ventricular stent to help with the csf flow in the back of his head and to treat the Syringomyelia. His March 2006 surgery damaged his brainstem and cerebellum and he has been in Physical and Occupational Therapy to help with tone and coordination in his upper body, particularly his left hand. 13 surgeries in 3 years. He is my hero!

Emma Contact Me

Well....Mine all started in Jan 2000. I was 19, lived in the hotel I was working in. Had a weekend off, and went for a drive. I was going around a right hand corner, and 3 motorbikes came towards me. The 1st and 3rd bikes missed me, but the middle hit my car that hard, it opened the car up from front wheel arch to halfway along the back door. Strangly, and luckily, everyone appeared fine. I had slight whiplash, and was signed off work for 2 weeks. I spent the following 3 years with constant 'migranes' and depression. I had a lovely GP who was VERY understanding about my migranes, my mum also suffered from them and he was also her GP. Eventually he said they should have gone and sent me to an Ear Nose Throat specialist. From there on for the next 2 years I was under investigation for allsorts. Suspected Minneres Disease (Spelling probably wrong), Carpul Tunnel Syndrome. I was also diagnosed with Polycystic Ovaries and Asthma. I kept telling my ENT that he was wrong, that I didn't have migranes, it wasn't a headache, it was a pain IN my head. Sounds similar, it isn't, it's totally different.

Then in September 2005 I had a 'black out'. I was gone. My husband couldn't wake me up, and I was taken to hospital. By the time I was at hospital, I was around again and everything was fine. They didn't even investigate, but I went back to my GP. He decided to ask my ENT for another appointment. When I got to my appointment, my usual Dr was off and there was a replacement who said that he wanted an MRI done "just in case". The next thing I know is that my GP phones and says that I have been referred to a neurologist. Not to worry, but if I go to his office he'll talk me through my MRI results. So I went, with my mother, and was told that I have this "Chiari 1 Malformation". It was quite funny at this point because my GP admitted he didn't have a clue, but called in another Dr from the surgery who said he thought it was a kidney condition. So I said "Really, will that show up on a brain MRI?". He then was honest and very nice about it, and told me to go home and look it up on the internet, but the neurologist wasn't hurrying so it wasn't that much of a problem.

I did a little research, but not much. I put total faith in my doctors. I found out the basics. My appointment came through for April 2006. My husband couldn't deal with my 'blackout's, nausea, pain. He thought I was just being lazy, so he left me and our 2 kids on 1st Feb 2006. I got worse quickly then, and my mum started having to look after me, and with her being disabled herself that wasn't easy. When my appointment came through I was told that yes I do have this chiari, that they didn't think that it was the chiari that was causing all of my symptoms, but they were going to refer me to a neurosurgeon. GREAT!

I moved house, 300 miles away in August 2006. I'd met a new bf, and decided to make a clean break, get my ex husband out of my hair. So I went to sign up with a new GP and told him that I was waiting for a neurosurgeon appointment. He told me that he didn't think that was wise and referred me back to a neurologist. As I hadn't done much research I left it to that. My new bf's mum is a retired nurse, and one day we were talking and I mentioned my 'illness'. She asked me to look into it more, because she could tell I was deterioratingfast and it was worrying her. So I did, and was shocked by everything I read. It was so much like reading my story that I couldn't help but sit and cry that finally I have these answers. So my new neurologist appointment came through, and I went. She did some little tests on me, I had to tell her that I had Chiari, because she hadn't asked for my MRI results. She literally said she wasn't interested and that it was something else going on. I was obviously fuming by this point. When I got home I called my GP and asked for my legal 2nd opinion. He laughed at me. Literally laughed and told me that he was not going to allow that. So I wrote a letter of complaint and changed GP surgeries. I then recieved a letter from the neurologist stating that I was in pain because I was overweight and taking to many painkillers. I flipped. I phoned her secretary and said that of course I'm overweight I have polycystic ovaries, I go to the gym 3 times a week, and can't shift it! I have taken 3 tablets in 4 weeks just to proove that I'm lightly better with them than I am with out them, and I will await her apology. In the meantime I moved GP surgeries, again. I now have a team of wonderful GP's that know that I'm not a hypochondriac and have done the utmost to keep me out of pain. Admittedly, it isn't helping much, but a supportful GP is one of the best things you can have. I have recently recieved a letter from my neurologist saying that she is SORRY for misunderstanding the amount of painkillers I've been taking, and has now looked at my MRI report and is referring me to a Consultant Neurosurgeon, who has Chiari knowledge. I've checked up on him, and he does really know about Chiari. So I'm happy for the moment. I've also got help from Social Services now, so twice a week someone comes around and helps me do the housework I have problems with. I can't constantly bend down and stand up cleanin g up after my kids, and I can't stand hoovering or ironnig for a time. I have trouble changing the kids beds because they're so low. I am now getting a vitalink installed so that if I black out again, I or my kids can push the button and if I don't answer, someone will come around and check on me and the kids. I get serious fatigue. I can be walking around town and then I get soooo tired I don't know if I'm gonna be able to make it home. Sneezing, coughing, yawning normal everyday things, they make me pass out from pain. Basically anything that causes some form of strain. I have constant vertigo, thats horrid. I fall down the stairs on a regular basis. It's become a joke now. I'm 26 and have been signed off from work for at least 3 years, I'm on Disibility Living Allowance and have had my driving licence taken away from me. I'm beginning to feel lonely. Luckily the friends I've made since moving here, I've been open and honest with from the start. So none of them have a pre concieved impression of me, none of them remember what I was like before this took over. I'm having trouble with my brother at the moment, he doesn't think I'm really ill. That's life I guess.

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