Chiari Online Support Group

Any one else have health problems besides chiari malformation

#1

Everything is so confusing sometimes. I always thought my chiari was the cause of all my problems but later on down the line drs found other problems. I have a tumor that is growing and drs contribute that as why i have more extreme migraines and chiari symptoms. Also cant walk hardly at all due to balance problems, weakness throughout my body, nerve damage, and scoliosis. I was born with chiari. I have nephew who was born with it and a cuzin who had other factors that caused her to have chiari. I was hoping i would get a better understanding on things by now after 3yrs but still at this minute my mouth is dropped and im shaking my head. I know im not alone but wow. Still overwelmed since i first found out

#2

I can assure you ANY neurological diagnosis is overwhelming to the extreme. The dr’s and medicos who deal with this sort of thing on a daily basis can be rather dismissive but as the patient, it’s impossible to just dismiss.
The problem I have found is that in having other conditions, symptoms can be blamed on those conditions, often without any further investigations. And it is only looked into if/when symptoms progress to a chronic stage. Unfortunately we often need to be our own advocates and push them to investigate further and this can be difficult to do. There is a such people as medical advocates who can take on that specific role for you and it sounds to me as if that is what you may well be in need of.
I notice that you are in Ohio and there are a couple of options available to you in regard to medical advocates. The first is advoconnection.com and the other is Ohio Society for Healthcare Consumer Advocacy (OSHCA) https://www.ohiopatientadvocates.com/.
They may be able to assist you to sort through some of the issues or at least point you in the direction of someone who can.

Merl from the Moderator Support Team

2 Likes
#3

Samantha, I had decompression surgery in August 2015. Last September I got in a bad car wreck (Stupid Uber Driver!!!) and it triggered a severe anxiety attack. After talking with my shrink, she referred me to a behavioral psychiatric nurse. I have been on meds to control mood swings since my surgery, but this nurse diagnosed me with PTSD. Not from the wreck, but from 46 years of symptoms and not being able to do the same things as other people (jog, jump on a trampoline, go on a boat, basically anything that made my head go up and down repetitively.)

I then learned Transcendental Meditation as a stress and PTSD reducing technique. It was expensive, but I was desperate. Within two weeks my whole life changed. After two months, I seemed like the calmest person at work while everyone else was freaking out over menial things. Seriously. If you can break the chain of worry and stress, you may find your body starts to heal itself. If TM isn’t your thing, try other meditation techniques. It won’t fix all medical issue of course, and I am NOT a physician, but it worked for me.

Hope you find some peace my friend. Chiari sucks, but it isn’t stronger than you are.

1 Like
#4

Thank you

#5

Hi Samantha,
I had my surgery in 1998, with success. Though did continue to have other symptoms, which they said were Parkinson’s coming on and treated as such for almost twenty years. With symptoms and mobility worsening over time and a new neurologist, and more testing have been re-diagnosed with MS at 60 years old. This has explained a lot, including problems way before the ACM diagnosis and surgery, as far back as an early teen. The ACM surgery did help almost eliminate the severe headaches. yet the balance, weakness, mobility, and other pain issues have continued to worsen, as well as some brain and spinal lesions, now to a point now I am in a wheelchair most all of the time. Maybe your Doc’ should look into the MS thing for you… Doesn’t change much, other than the title for the diagnosis. But it may provide some answers and direction, as it did for me.
Best of luck to you,
Jack

#6

Have the doctors checked for Ehlers-Danlos? I have EDS, but wasn’t diagnosed for 22 years after symptoms started. When several members of a family have Chiari, it’s a good idea to look for Ehlers-Danlos. My brother has a Chiari as well and scoliosis. I have nerve pain and nerve compression that changes daily, depending on which vertebrae shift, which ribs are slipping, etc.

I hope you get some relief soon. I am waiting as long as I can for decompression, but someday I hope it will help me!

Best wishes
Sarah