Should I get brain surgery? my Chiari story, I need help.

[MashalZ]

I would like to know if anyone else has ha a similar experience. If anyone has had the surgery, and if so where and with who? who do you recommend? what were complications after surgery, if any? What do you recommend I do in general, any other tests? If you're terrified just like I am and you need someone to talk to because I sure do.

I'm a 23 year old female diagnosed with Chiari Malformation 1 in August of 2016. I have experience migraines since I was 12. My eyesight has always been bad, and in the past few years my hearing started to getting worse, my hands and feet would tingle and become numb, double and blurry vision.
I got into a car accident about 7 months ago and because of that I got an MRI and then discovered the Chiari. I also got a CT scan and a CSF Flowstudy. I have been told, the brain falls 15mm, there is a slight block in the CSF but not a full one. I was told I could stop breathing at any point and could be paralyzed one day.

[selmaS]

  I was in the hospital for 5 days....in ICU for 2.5 days......

I was followed by my Dr with set visits, 6 weeks, 6 months and 1 yr....then released from care.

I did not have any reason to return to a hospital after having my surgery ...I do have a few related conditions and have been to the ER but that has nothing to do with the surgery itself except you need to know if you have any related conditions as they can affect recovery.

If you have a Chiari specialist they will know which testing to do....but make sure Ehlers-Danlos, sleep apnea, Syringomyeila,ICP, POTS are ruled out.

[selmaS]

  Hi and welcome to the Chiari forum.

Many of us here have had surgery....but not that many continue to post on a regular basis....I had surgery in May of '09...and would do it again as I am better now than I was for yrs b4 surgery.

I went to TCI in NY ...but I really feel everyone should research Drs and find the right one for them....what worked for me, may not for you as you need to be confident and comfortable with the Dr you select...so we do have a list of Drs for you to use to research them...visit a few to see which one is right for you....having the right Dr is KEY !

Have you had ALL related and non related conditions ruled out?

[MashalZ]

I see, when you had surgery, how long were you in the hospital and did you have to go back to see your doctor for any emergency once released from the hospital.

I have not had other conditions ruled out, ive only had a CSF flowstudy done (other than Ct scan and mri) do you recomend I have other tests done and if so which?