What are the pros and cons of having the cerebellar tonsils removed?

Question

As anyone that has been diagnosed with CM, I have been reading and reading and reading. I have read success stories where the tonsils are removed instead of the decompression procedure and life has been great after the surgery. The recovery time is rather short as well. I have also read where people's lives are greatly improved after decompression, but recovery is a lot longer. What advice can anyone offer? Are the tonsils safe to remove? They are part of the brain, so I'm guessing they are important.

Thanks in advance.

selmaS · Answer

Well if there are any ill effects I have not suffered any of them....I had mine done in '09 and I have gotten better with each yr that has passed....

 I am glad you are benefiting  from the forum and my info.....

teacherhall · Answer

Good Day, Selma,
Do you know if cauterizing the tonsils has any ill effects? I would guess that with the tonsils remaining, the cerebellum would still function correctly. 

Also, thank you so much for sharing your knowledge and experiences. I cannot tell you how much this forum has helped me.

teacherhall · Answer

Doctors being dismissive is one of the worst things ever. My endocrinologist was when he was reading my MRI report. The technician wrote that he didn't see Chiari even though "the tonsils are somewhat low hanging." I've neve wanted to cuss out a doctor before in my life. I've learned that I have to be proactive and my own advocate if i'm going to get better. Connecting with others is a great thing. It takes away that lonely feeling.

Keep fighting the good fight!!

The_beat_goes_on · Answer

another thing ... don't be afraid to strike up conversations in their waiting room.  I have met many chiari patients that I have kept in contact with over the years.

The_beat_goes_on · Answer

I remember asking sort of the same question .... and there were a couple responses of people having their tonsils removed and they had successful recoveries.  I had intermittent nausea since my first surgery.  I started joking about my "Dr Kim diet" ... to make it more funny, shunt surgeries require a bariatric surgeon, so for pre and post op I see a bariatric surgeon who does mostly weight loss procedures.  Meanwhile I could not eat.  My weight loss surgery worked SO GOOD.  Haha.  The second decompression changed something, and it's been constant ever since.  I love my neurosurgeon, but I have not really addressed this issue.  I have the added issue of being shunt dependent ... and neurosurgeons ... maybe all surgeons, are really unwilling to navigate cases like mine if they were not the original surgeon.  So I'm terrified of being dismissed and not finding a new doctor, when I need a neurosurgeon for life to manage my shunt.

For sure ask what your surgeon plans to do, ask what issues people tend to have afterwards in the short and long term, what is common, what is NOT common and how are those things managed? I also found out after both my decompression surgeries that I have ehlers danlos.  I remember thinking I couldn't possibly have it, because I'm not THAT flexible.  Turns out, I am freakishly flexible in ways normal humans just wouldn't consider or try.  Mostly in ankles / wrists / fingers.  i remember watching ehlers danlos videos, and not even trying some of the extensions because it looks like your hand might snap off.  Ha.  They don't snap off. ;p  

But yeah,  take it from me .... ask questions first.  And if you can, see more than a couple neurosurgeons.  Second opinions mean very little after the fact.  Right now, I feel literally stuck with this nausea ... I'm considering having my GP start treating it because my neurosurgeon has already kind of joked about sending me to a colleague.  I've read horror stories of surgeons that cut people open and dismiss them.  He and his staff have been really great and stuck with me for years now ... but I think I'm treading on thin ice.  And that is really unfortunate.

The_beat_goes_on · Answer

I have had my tonsils completely removed.  There really is not a lot of information out there about it, one way or another ... I will say that I have had constant crippling nausea since my second decompression this past november, where my surgeon removed the rest of my tonsils ... and the drug that worked BEST was the scopolamine patches.  People usually get those for motion sickness on cruise ships.  Maybe it is coincidental? and maybe it will eventually pass?  When my nausea is not managed with medication I can not keep food or fluids down, period.  Not even a sip of water.  

I didn't know this was even an option ... until it was done.  I think I would have sought out a second opinion on the removal of my tonsils.

selmaS · Answer

Hi...I went to the story on Katie....but I have more questions....how far post op was she when this was written? It stated she would have a MRI at 6 months and again at 1 yr post op....which means she  was early in her recovery and many have this euphoric like response to surgery.....but if we do too much too soon we can have set backs....I just wonder how she is doing at the 6 month and yr post op etc......

 And over the yrs, I have encountered many that praised Drs  as well as the outcome as they did not want to admit they had a bad time of it....not that I am saying Katie did or will...just that this is not enuff info to suggest what will work for others....

 Did she have any other related conditions?

I agree with Mel above, recovery will span over a few yrs....with each yr that passed I noticed more benefits....it was slow but steady...BUT those early months post op...was more like a roller coaster as I had a return of symptoms and felt depressed....but knowing it was "normal" healing was easier to accept and get over the depression part of it....but, it is not always as easy as in Katie's story....and I do not think removal of the tonsils is the reason for it....it may have just been her....but again I would love to hear more of her recovery past this point.....

 The best thing you can do is keep asking questions and seeking the answers...until you find the right course of treatment for you.

Mel5056 · Answer

I had my tonsils removed, a c1 laminectomy, bony decompression and a patch sewn in the dura.  I had the exact same questions before surgery and was scared to death as well.  I can only tell you every single person is different.  I think brain surgery recover is long for everyone.  I mean you keep healing years after.  I pray you get the answers you are seeking and can come to peace with what they will do.  Many prayers for smooth recovery as well.  God bless!

LiliKriner · Answer

This is a very interesting question, I have recently been diagnosed with CM and I don't blame you for trying to avoid surgery, it's a scary thought to be honest.  As I was doing my research I asked my self the same would removing my tonsils help at all? Why can some get them removed and others can't?.  I'm guessing the more we research options the more we will have questions as to options.  Good Luck!!

selmaS · Answer

Hi....from how I understand it, they would not be able to remove the tonsils without doing the decompression....and most Drs will only remove the tonsils if they are twisted around other structures causing issues.....some will cauterize them to get them to retract.....but the practice of removing the tonsils is not as common place as it had been. 

 This part of the brain helps with balance, which is why so many of us have balance issues....

 Let me know where  you got some of this info, I would love to read thru some of it.....

What are the pros and cons of having the cerebellar tonsils removed?

12mm herniation

Help!! Excruciating lymphatic swelling two year post surgery;

Help: Healing and after surgery issues (Syrinx)

Need Advice

12mm herniation

Help!! Excruciating lymphatic swelling two year post surgery;

Help: Healing and after surgery issues (Syrinx)

Need Advice

You are reading content posted in the Chiari Malformation Community