Chiari Online Support Group

New here - under a month until surgery

Hi everyone!
I’ve read these forums on and off for years but decided to finally post. My name is Rachel, I’m 39, and I was diagnosed with Chiari in 2004 following a car accident. The accident didn’t ‘cause’ the condition, but aggravated strange symptoms which required an MRI, and that’s how I found out. Other than random severe migraines, I was asymptomatic. I hoped I might be one of lucky ones that stayed that way. Around 2012/2013, my health really started declining. I chalked it up to horomones (I’m in my mid/late thirties), then Hypothyroidism that returned, and even nutritional imbalances. I knew the Chiari could be at fault, but was so afraid of the idea of brain surgery I buried my head in the sand. I got worse and worse, and in 2015, following my honeymoon, I got very sick. My GP thought it was Epstein Barr, and I focused only healing. I also was seeing a neurosurgeon (since 2013, a Chiari specialist) by this time who said I was candidate for surgery, but that we could hold off and wait. My regular neurologist thought I might have Fibromyalgia, and complex migraines. He was very conservative and didn’t think I needed surgery. I spent thousands of dollars on supplements, massage, Tens, PT, steroids, injections, etc trying to manage it. But by late 2016 I was in almost constant pain with unbearable fatigue. I missed 6 weeks of work this spring trying everything, only to really get worse. Finally even my conservative neurologist agreed it was time for surgery. I’m scheduled for August 25, and I’m so nervous but hopeful. My surgeon gave me 80% odds for an 80% improvement. I’d take a 50% improvement!
I’m married to a very supportive husband, live in Orlando, and design theme parks for a living. It’s a job I want to be able to return to soon at 100%. I hope to contribute to the positive stories section before the year is through!!

HI Rachel, I am 54, have Chairi malformation, blocked spinal fluid, brainstem has fallen and has a bulge and deformity to the spinal cord due to Congenital CSS. So lucky I do not have a syrinx yet. Diagnosed 6 months ago. I have decided not to have the surgeries recommended by my Nuerosurgeon. I think surgery is too risky. I take much better care of myself now that I know what is wrong, rest a lot. Migraines are almost gone and all my symptoms are much better, since I am more careful what I do physically.
Tina from WI

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Dear Rachel,

For some reason, it seems to be quite common for Chiari symptoms to not appear until folks are near their 40’s. Like you, I was 41 - and may have gone all my life without symptoms is if weren’t for repeated head trauma while working in Papua New Guinea. (Twice a month, a national driver drove our van to a town for shopping 3 hours one-way - and he would hit the pot holes in the road 50mph or faster! I rammed my head into the roof of the van time and time again.) I don’t know if the head trauma was a trigger for the Chiaris - or if it’s just the fact that when we get near 40 yrs old, things just start to sag anyway!?!?!

Like, you, I also tried all those other treatments under the sun - with absolutely no relief whatsoever - until I had the decompression surgery. Since I had been a trained marathon runner for decades, I also was in very good shape and ate super healthy - vitamins, home-grown organic even before it was the ‘thing.’ None of that helped. I just got worse and worse… until the surgery.

I mean, it makes sense. Chiari’s is your skull genetically too small for your brain. Your brain - cerebellum - is oozing out the base of your your skull, because there isn’t enough room in the skull for all of your brain. Diet, drugs, lifestyle - are not going to fix that. For me, I had to have the base of my skull widened - and 1/2 of my C1 vertebrae removed. I made a 75% recovery - and LOVE that 75%!!! I hope you do even better after your surgery.

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I just found out 2 days ago I have chiari. It’s not confirmed by my neurologist yet but my MRI and everything it’s says points to it. My cerebellum tonsils is measuring 2.1cm below my foramen magnum. I am having terrible head and neck pain tinkling in the face and arms and legs.

Beth, Tina, and Nate - nice to know you!
Tina - I’m glad you are finding your Chiari manageable without the surgery. I tried to avoid it for years. But I knew it was time and the risks were finally worth it when my quality of life dropped dramatically.
Beth-thanks for encouraging words and well wishes. I, too, was a distance runner (half marathons and 15k) until about 2014. I also did yoga, and barre until late 2015. Now I can barely walk a block some days. I’m praying the surgery allows me to work on restoring my health.

Dear Rimac,
Be encouraged! There is the possibility of competitive life post-Chiari’s. I was a afraid to get back into jogging/running, simply because I of the jarring motion. So, I switched over to race-walking. My neurosurgeon told me it was OK to start jogging again one year after decompression surgery. But, I just don’t like the idea - since it was persistant long-term impacts (like jogging & driving on potholed roads) that triggered my compression in the first place.
Race walking - aka - power walking - can be just as cardiovascular as jogging. Especially if you go 11-13 minutes-per-mile. And, it’s smooth on the bones. Unfortunately, at the Master’s level (55+ years old) it is extremely hard to find competition here in the South. And, I don’t exercise for fun. I exercise to win! At this point, I have only found the Senior Games to have race walks that I can compete in. Thing is, for the last two years, I competed in Charlotte-Mecklenberg’s county level 5K, and both years I was the only competitor in the race. ( That’s one way to win.) Chiari’s still has the last say, though. I still suffer from every-4th-Day reoccurring paralysis since my decompression surgery. Therefore, even though I qualified for the National Senior Olympics, I was unable to compete, because the 5K final was scheduled on one of my Every-4th-day paralysis days. NUTS. If a race falls on one of my 3 good days in between, I can compete just fine. It’s just that 4th day… I’m a zombie!

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Hi Rlmac!
I have the same exact history and I live in Orlando. If you’d like to call me I can explain a few thing to you. I would be more than happy to. I had decompression surgery in 2013. It is hard for me to type a long letter (my arm gets numb) so you can call. Here is my email and then I will give you my cell #. when you email. ■■■■■■■■■■■■■■■■■■■■ My name is Carol
I think you might be able to help me too.
Hang in there! Best, Carol