chiari

[birdy870]

my son is 2 years post op for a decompression , what are the long term effects of a chiari, he is 17 and has some weird things happening to him,   dizzy spells, spasams in his thumb, dr just keeps blowing it off to lack of activity the PT says that he is in good shape, so what gives.  is the chiari somthing that he will deal with for the rest of his life. what are some things that i should be looking for.

[*Stormy*]

Hello and Welcome

What I was told pre-op that Chiari was a complex, chronic condition and that having the surgery would guarantee to stop the progression...but any other benefits would just be gravy ontop of that. I am 2 months post op now and I still do have a long list of symptoms that I had before. I was told that it could take up to 2 years to see what benefits the surgery would give me in total. Since your son is 2 yrs post op, the things he is dealing with still unfortunately may be permanent. However, did he always have these things or did they just reappear? If they are new to him since surgery then I would get him to a NL or NS to see if there is a chance that the problem has reoccured. I have heard of cases where the person does really well for a few years and then starts having problems again. Mine is a little different..I never got rid of some of them so they are still there.
For myself, I am happy that I will be getting a new NL who will be someone that I can go to for monitoring, as well, I will be having follow up MRI's. Does you son still go for follow ups?
Chiari is something that he will have to deal with for the rest of his life, however, there is a large range of people who experience very little to a lot.

Good luck to you, I hope you find some answers!
Carolyn

[selmaS]

HI and welcome to the Chiari forum.

We r all diff so it can be diff to tell if it is from chiari or a chiari related condition.

DO u know if ur DS was checked for syringomyelia or tethered cord, DDD, PTC, EDS, Stinosis?

And do u know if he had a dura patch, if the tonsils were cauterized....there r some PFD that r not invasive and may not have completed the steps to keep more symptoms at bay.

Has ur son had a post op MRI recently?

There r diff answers to ur question about dealing with chiari the rest of his life....I am to understand there is no cure for chiari only treatment......and many can go yrs after PFD with out issues....and others that have issues right away....

Does ur DS have bowel or bladder issues.....lower back pain, leg issues?

IS ur DS inactive?

What is he doing when he has these symptoms?

"selma"

[dermarfx]

there are several people on this boar d that will answer, they do every day, I haven't had surgery, so I am not qualified to answer