Chiari Pain increasing?

Question

I was diagnosed with ACM 9-10 mm when I was 27. Now, at 36 with no treatment because I thought could live with it and just make lifestyle changes, the headaches as well as other symptoms are getting worse. This past week I got laryngitis and the cough was unindurable. I actually just wanted to call 911 to intubate me to put me into a drug induced coma to get through it. The head pain has just gotten so bad. The everyday pain is managable but when I get sick... Do you think that the pain is going to get even worse if left untreated? My thought was that as I age, atrophy will take care of the problem. I guess that this is not occurring fast enough. What are your suggestions?

This discussion is related to Chiari Malformation/connection to other dx's/pain.

selmaS · Answer

I hear ya...I am always telling my daughter.."don't make me laugh"......ouch!....it also causes me to cough...which also hurts......the pain can cycle...any trauma...stress or nothing at all can causea flare up.....in May '07 I fell...and have been really bad ever since...I have had this since birth, and was just dx, in Feb '08....but I can say for certain I have been symptomatic all my life...I just adapted to avoid the pain which I thought was normal and everyone had it because I always did.....but when it gets too bad u just have to do something.

I am going to travel to NY to see an expert....where or should I say how far r u willing to travel to get to a dr?
Use the ASAP website...it's a d o t o r g .....a board member is from Palm Bay , FL....she may be able to suggest an expert close to home for u.

Godspeed
"selma"

NICOLE323 · Answer

Thanks for your reply. I have an MRI yearly to evaluate the progress of my Chiari. I do agree with finding a physician that is well-skilled in chiari, but who? I live in Palm Beach County Florida. I have not been able to find anyone that I trust and has the experience. I just want to know if this pain is going to cntinually get worse or will it ease ever. Laughing gives me a headache.

selmaS · Answer

With a herniation of 9-10 almost ten yrs ago..get another MRI....it could have grown or u could have developed other chiari related conditions. There is no cure for chiari, just treatments......it progresses ,but not the way u want.
You also may be able to get a better treatment now as opposed to ten yrs ago. I suggest u find an expert NS in chiari...if they r not an expert (min 200 chiari surgeries a yr) keep looking till u find one.
Also stop by the chiari forum here on medhelp......

Good luck
Godspeed
"selma"