My doctor said yesterday he thought removing the tonsils has a better long term prognosis, and prevents recurring symptoms. He’s not a NS, so I wanted to hear from you guys that have had the tonsils removed during decompression, how was recovery, and are your symptoms gone or greatly diminished?
I was just talking about this and said the same thing! Not sure how I feel about that, any part of the brain must have a function,no? I alsowould love to hear the answer to this!
Mandy, I did not have tonsils removed but once the room was given they did retract on their own. I am on the fence about any brain removal. I don't know exactly what those darn tonsils do but I would think that would allow for other issues. My guess is you are researching like a mad woman!! As always I would love to know what you find. I do know this is a fairly common thing. I say ask dr t on this one. He will pop out a bunch of case studies and personal experience. I don't believe he uses that technique but would like to know why or why not. My guess is he will have something to back up his decision. There may be some cases where it is more warranted than others.
I have had the tonsils "removed". I have known about my Chiari for 15+ years and had the usual decompression about 15 years ago. All was good for a long while, but as I aged the symptoms slowly crept back up. It finally got to a point about 2 years ago that I went searching for a NS that could help - I had moved out of state since the first surgery so my original NS wasn't an option. Long story short, as my symptoms had progressed to a concerning point (memory loss -seems I couldn't remember much more than 24-48 hrs; balance issues, weakness in my arms & legs, etc). There were other symptoms, but I mention these as they are the ones that pushed me to make the decision for a second surgery. While the headaches, tingling/numbess, etc are annoying and uncomfortable to say the least, they didn't make me fear I would no longer be an active member of/for my family. Now, since the 2nd surgery wasn't altogether that long ago, I can't give you a true long-term outcome. However, I can say that I no longer have the memory loss, the weakness or balance issues. And I have far less headaches. I've been in your shoes before and I don't envy your decision. It's not an easy one to make. I feel differntly than the others do in that I wasn't concerned about me needing the tonsils. I won't lie, I did have some concerns that I may need them. But, at least in my case, it appear they were there to cause me more bad than good. As in any surgery, do as much research as you can, talk to the doctors and ask a million questions all before you decide what you want to do. Good luck and health to you! Cheers
My NS told me that he would never remove the tonsils as long as they were not necrotic.(rotted)..Once the dura is open and more room is made..he told me the tonsils would go back up to where they belong..and he was right.
I do not understand why some NS's do not open the dura...isn't that the whole point of this Tx? To make room???
No date yet. I go back on the 12th and will probably get one set up then, he didn't want me to rush into an immediate decison although he said I would only continue to rapidly decline if I don't have it done. He told me to bring in my novel of questions also LOL. Oh if he only knew.
Hi frustrated, I am glad you have made it to this stage of the process, I remember talking to you about a month ago, and things were still up in the air. Yeah, I research like a mad woman all the time, the OCD kicks in and I can't sleep!!!
My granddaughter's NS cauterized the tonsils. In a lecture she gave at the Cleveland Clinic, she stated that there is no known function of the cerebellar tonsils. Cauterizing them allows them to shrink up faster.
I had the tonsils surgically removed from a NS at TCI. He explained that they have absolutely no function at all, very similar to the tonsils in your throat. He has seen less complications and has had a better success rate from this procedure. But he also said only the most experienced CHIARI NS are doing the procedure. I am about 3.5 weeks post-op with no complications so far. Just the normal emotional side effects from having brain surgery. I have not had any Chiari ha’s and the neck pain I’ve had (which has gotten increasingly better with time) was from the muscles healing from where they cut in the back. Feel free to message me with any other questions.