Chiari Online Support Group

Decompression surgery.

Only been diagnosed since September last year and already they have discussed me needing decompression surgery ad it’s causing substantial symptoms… anyone else felt like it’s all moving really quick?

I’m not sure how many other Chiarians have been told this - but my neurosurgeon told me that your greatest chance of full recovery from decompression surgery is 1) you have the surgery AS SOON AS the symptoms appear. Preferably within under 2 years of symptoms manifesting themselves. And… 2) the younger you are, the better. Unfortunately, I went 10 years misdiagnosed and with HORRIBLE symptoms (was almost a complete vegetable before being diagnosed!) And, I was over 50+. So, my chances were less than 100%, but I still regained 75% and LOVE having at least that much life back!!! My neurosurgeon does nothing but Chiari’s decompression, so I think he knows what he’s talking about. When he confirmed my need for decompression surgery, he had a waiting list 6-months long! Those were the slowest 6 months of my life!
I do hope your surgery goes well. A good neurosurgeon is the best thing going for you! The quicker you have it done, the less permanent damage to your brain stem and all.

I was diagnosed in July, saw my Neurosurgeon for the first time in late August, and he sent me to a neurologist for further testing in late September. The results of that testing indicated that I needed surgery as soon as possible, so I didn’t have much time to think about it. I was decompressed on Halloween. I honestly think that it would have been more difficult for me if I would have had a long time to think about it. In my case it had to be done and I was happy to get it over with and move on to the next chapter: recovery.

Hi, I was diagnosed about 5 months ago. Dr recommend neck and decompression surgery. I decided to wait as long as I can. I will get a second, maybe third opinion too. I have had this my whole life, so I will deal with issues as the come. I know now to be more careful, stay hydrated, eat healthy, don’t lift heavy items, don’t strain, get rest, less stress, etc.
Tina from WI

I had my surgery about 6 months after my diagnosis. I felt it was being rushed but my symptoms were progressing to fast. Ever CT scan showed the facts. Sometimes you have to do what you have to do. I’m coming up on my 2nd year post operation and I’m doing a whole lot better. I went from not knowing what was going on and why I had a hard time functioning with everyday tasks, to enjoying all I can and more in watching my children enjoy their childhood, and spending more time with my husband. When you get a pain free day you must enjoy it. Get a second opinion if your not certain. Best wishes.