Looking for much needed support

Welcome Greetings and Introductions
1

Im new to this but so happy I found this support group ! I'm Kas (21) , I was diagnosed almost two years ago with Chiari Malformation. I've had what then seemed to be random health problems that couldnt be explained. I would be sent the the hospital, called mentally unstable, and sent home. After respiratory failure as a child and inability to eat without pain as a teenager with chronic headaches, back pain, and weirdly weak arms, finally a doctor decided to look at my brain after trying to get a reflex out of my left leg and not being able to and saw the problem there. The problem being the bottom of my brain sticking out of my skull of course. He gave me a couple pill prescriptions to manage pain and told me to come back every six months for a check up. I dont do well with pills at all, to the point where I cant really trust myself with them, and they have horrible side effects anyway. I havent been for a MRI sense being diagnosed. This is where the community comes in.

None of my doctors have been very good one so in a few weeks im going to a new one and finally getting another MRI. I really want to be prepared this time. I hate feeling weak and that makes going to the doctors and being honest very hard. I've been called crazy too many times and while I usually dont care what people think, I need my medical professional to take me seriously and pay attention. Does anyone on here have any dealing-with-doctors tips?

I would also really love any tips on natural therapies ? Anything to avoid or even look out for? Anything at all that will help with the migraines, pressure built up in my head and behind my eyes (happens most often), unfailingly weak muscles, faint/ dizzy spells, and back pain ? I'm always afraid of old symptoms returning like being unable to eat and respiratory failure. Do the possibilities of what can happen scary anyone else?

I've never been able to talk about my CM because it makes me strangely self conscious so its a huge relief to be able to do it now. This is a really long post so if anyone actually reads it, thank you for doing so.

2

I’m going through pretty much the same thing as you are its nice to know I’m not the only one waiting on a ct now

3

Kas, take a look at this info sheet on preparing yourself for your doctors appointment:

http://www.chiarisupport.org/page/finding-a-doctor

We're all really pleased you found us too.

4

If a doctor hears something they dont understand they try to tell you that your crazy or making it up. Be persistent, bring proof and be persistent. Do A LOT of research and bring facts. If a doctor makes you feel stupid and obviously has no intention of helping, fire them! Find a doctor that specializes in chiari malformation or who is involved in research, they would look at you like a shiny new toy that they get to investigate (which isn’t always a bad thing).
As for your headaches, look up diamox for the treatment of intracranial hypertension, that’s what got rid of my headaches.
Good luck!

5

You have Chiari and the only cure is surgery. I am so sorry to hear how you have suffered and been misdiagnosed and treated. The symptoms are all from the pressure on the CNS fluid to the brain. Think of it like putting your thumb over water at the end of a hose, it increases the flow. The same thing is happening in your brain. Where do you live? You need a good neurosurgeon who has experience with CHIARI, this site has a list I think. Anyway, I am 8 months post op and still have headaches but it the other bad symptoms! I Take a lot of advil and use gell ice packs for my neck and eyes when I have headaches. Good luck to you. Try to stay positive