cerebellar tonsillectomy

[bbisweary]

I have seen a NS in Cleveland for my 11mm Chiari, and took all of your advice and saw the NS in Cincinnati.They both agreed that the crowding from the herniation, and the fact that my dens in C2 was pressing on my brain stem was causing my symptoms.  However, they do have philosophical differences in how they will approach the surgery.  One wants to do endoscopic decompression surgery with a cerebellar tonsilectomy and an odontoidectomy of the dens.  The other does not do endoscopic surgery and says he doesn't feel the tonsils should be removed.  I have been doing research about the tonsillectomy and many CM neurosurgeons feel that the scar tissue caused by the tonsillectomy will cause adhesions that may have to be dealt with later. Have any of you had the tonsillectomy and if so, have you had any problems?  Also, does anyone have the dens bone in C2 turned backwards and tilting into your brainstem?  The NS says it's a birth defect.  I wonder if this might be a common problem?

[mr8teacher]

I wish you the best.  I really wished that my insurance would have worked out to see Dr. Rosner for my first surgery because I don't think I would be needing a 2nd surgery (I am having my 2nd surgery with Dr. Oro on Oct. 16th).  Sending my best vibes your way!

[maced2x]

It looks like we will be seeing Dr. Rosner. Hopefully all will go well with the insurance.

[selmaS]

  Hi and welcome to the Chiari forum.

The poster u are replying to has not been an active member as that is an older post....but we do have many members here who have had surgery and several seeking info to help them make a decision as to what is best for them,

I invite u to start a new thread and give us some info on u, and allow the active members to take notice of ur concerns.

  We r always glad to have people join us, but never happy for the reasons that bring them.

[mr8teacher]

I had my tonsils removed a year ago.  Again, I stress that the experience of the NS is the most important aspect of successful surgery.  How many Chiari surgeries has that NS done?  What does his/her follow up look like?  Does the NS just pass you off to your PCP when done with the surgery?  There are a ton of questions like these that I would be asking.  I would want to know that success of the NS - not the success based on 'literature."  If you have any questions, please feel free to contact me.

http://jeffmayo-yurek.weebly.com/#/

Jeff Mayo-Yurek
***@****

[maced2x]

Did you decide which surgery to have?

[mr8teacher]

Hello,
I wanted to make sure that I needed surgery and that I was comfortable was the surgeon.  I saw Dr. Rosner in North Carolina and he recommended that I have my tonsils removed.  The Mayfield Clinic told me that I needed surgery, but Dr. Theo told me that, 'I don't remove the tonsils, but some surgeons do."  I then saw Dr. Schrot from the UC Davis Spine Center here in Sacramento (where I live) and I ended up having surgery with him on Oct. 19, 2011.  He resected my tonsils.  I am doing much better now and happy that I had the surgery (I would have loved to have had Dr. Rosner too, but my insurance didn’t have him as a network doctor).
Every surgeon is different.  There is no "one" correct way to do surgery.  I am a high school English teacher (and love research - I know I am strange) and have over 200 medical articles on Chiari.  From what I have read, tonsil resection is becoming more and more the choice of many surgeons.

Here is an updated link to the article:

http://www.conquerchiari.org/subs%20only/Volume%205/Issue%205(1)/Histological%20Tonsils%205(1).html

The number one thing I recommend is that you do your research on your surgeon.  How many surgeries has he/she done in the past year, in total experience, etc?  Also, I would ask what the follow up protocol is.  When do I have Mri’s (Cine Mri’s are the best) after surgery?  The last thing I would ask for is the outcomes of past clients.  Since there are several ways to have “successful” surgery, the outcomes of the surgeon are probably more important than the way in which the procedure is done.  

Just my thoughts.

Thanks,

Jeff

[selmaS]

  Hi and welcome to the Chiari forum.

From what my NS told me, they try to keep the tonsils intact...only if they r impacted and it is not possible to create flow by doing a regular posterior fossa decompression....

  Research the Drs and make sure the one u choose is well informed and experienced with chiari.

The person u directed ur comment to is not an active member....so I hope u do not mind me saying hello : )

[kthkenloe]

Jeff,

Do you know if there is an up-to-date link on the website you referred to? I have been told by my neurosurgeon that he removes the tonsils. This is very scary to me, so I was needing any positive information about it that I could find. I was always told not to mess with the brain. Any help on current information would be appreciated.

[mr8teacher]

Hello Everyone,

From the research I have done, this is not an old practice, but a new practice.  Dr. Jorge Lazareff (neurosurgeon at UCLA) has done studies on it.  I am wavering on removing or shrinking, so I just wanted to share what I have found (conquerchiari.org website):

http://www.conquerchiari.org/subs%20only/volume%205/issue%205(1)/histological%20tonsils%205(1).asp

Hope this helps...

Jeff

[selmaS]

Hi Nicole,

Well I had my surgery at The Chiari Institute in NY.....recovery is diff for everyone....I do have a few other issues that still need tending, but I am better than b4 surgery.

I am glad I had surgery, and the way my NS explains it is, the tonsils r a part of the brain and do serve a purpose, that is y they do not sever them...they only cauterized them to help them shrink back into place.

If u run ur cursor over my name (blue hyperlink) it will take u to my profile page.....on the left hand side I have a journal of my surgery experience...feel free to read it and look at pics of my scar.

"selma"

[coley31680]

Hi Selma
I am curious to know what surgery did you have and what were your symptoms and how do you feel now after having the surgery? I am currently going for a second opinion, which is the Chaiari institute taht is right here on long island. The neurosurgeon that i orininally seen said he would like to do the decrompression surgery with the removal of my cerebellar tonsils. he said that it is absolutely safe to do and that you dont need them. he said that this would probably be the best way to go, that way it would less my chance of having to get a revision down the road. he is suppose to be a great neurosurgeon and i've been getting a lot of good feedback. but..... there is a part of me that makes me want to look into this furher. this is why i chose to go get a second opinion for the surgery, which is the chiari institute. how did you feel after the surgery? do you feel better now? i would truly appreciate your input

thank you, nicole

[selmaS]

Hi and welcome to the Chiari forum.

I had surgery and I was told that the removing of the tonsils is no longer done and it is an outdated practice that was once believed had no ill effects....that is no longer the case.....
.I am not sure if ur dr is a true chiari specialist...and it is those that go to a NS that do just a few a yr that end up having the revisions....

I am interested to hear more on how ur dr explained this to u........

"selma"

[xrunner]

The facebook page for Dr. Di is Dr. Xiao Di Fan Club. There is a lot of comments going on there right now with the news of him leaving Cleveland Clinic. I too was scheduled for surgery on July 19th??????

[coley31680]

Hi my name is Nicole  and i live in NY. I am also trying to decide if i should have the tonsilectomy for my cerebellar tonsils. i am also scared and do not know what to do because of the long term effects. i was told by my neurosurgeon that the tonsils are not needed and that it actually is a safe surgery.  i have been researching a lot of cases and to enlighten you, i see more positive effects for patients who get the tonsilectomy. removing the tonsils will actually give you more of a chance to not have to get a revision down the the road. for example, if you just get a decompression surgery, the tonsils can move downward again and that it can actually move the synthtic plate they put in. Please let me know how you made out and did you actually get the surgery????????????

[*Stormy*]

Just wanted to say to the both of you that I am praying for your surgerys to be moved up too!! I remember all too well what it was like to have to wait when you are in so much pain. Good luck!

[LauraSue49]

We have something more in common than just Chiari, Dr Di and surgerry in Sept and both hoping for a move up.
Not sure the  Facebook page you need but try this one
search  Dr. Di Fan Club, facebook, cleveland clinic,
http://www.facebook.com/group.php?gid=292514401361&v=info
Wishing you well

[bbisweary]

Thanks for your comment.  Please let me know what you find out.  I am praying that Dr. Di moves my surgery up.  It's scheduled for September, and right now I'm miserable. I'm trying to work and the pain in my neck and the back of my skull while working on my computer is now excruciating.  It spreads to my cheek bones and I just want to scream!  Dr. Di had told me to read some of the comments on his facebook page but I can't find it.  Do any of you that have been to him know how to find it?

[not_all_tonsils_are_in_your_throat]

will do... we are a bit apprehensive (as everyone dealing with chiari and related conditions get before a neuro/surg appoint) but hopeful!

[selmaS]

Hi please keep us posted on what Dr Bejjani says on this procedure for ur DD....sending good vibes ~~~~ and prayers for ur DD, u and all in charge of her care.

"selma"

[not_all_tonsils_are_in_your_throat]

my daughter also has brain stem compression from the dens, they say it is from too straight a neck... she lost the C in her cervical curve.  she will see DR Bejjani in PA this week to see if he agrees and would do the recommended fusion to re-curve the neck, thus stopping the dens from poking her brain stem.  hope this helps.

[*Stormy*]

Well I am glad to hear that at least you have 2 NS on your side that recognize and validate your issues!! That in itself is so gratifying!!

I haven't really heard of two many ppl that have had a tonsillectomy either..but obviously your herniation is a lot larger than most of us so that is probably why. I have heard of cauterization, so maybe you could ask the NS why that isn't an option instead? Also, ask the other NS why he would leave the tonsills in place and not do a tonsillectomy? I would ask one specialist why they differ from another and then take that information, the pros and cons of doing it each way, and then make your decision. I don't think there is any harm in letting the NS know that you have sought more than one opinon. Also, like Selma said, you could get a 3rd opinion and see what they say. Plus I would look at which NS is a Chiari specialist (or maybe they both are?)

Sorry that you have this confusion but again, I am really glad to here that you got somewhere!

Carolyn

[selmaS]

Hi...I have heard where they do the removal of the tonsils...I think that was an older form of correction and is no longer being done in the mainstream of chiari specialists.....I do know they will cauterize them  to have them shrink, but not remove.

The issue it seems is u may have one NS that does the surgery and one chiari specialist.Not knowing who u saw it is hard to really know...but the one that does the endoscopic  must be in Cleavland and has done many of the members here....and has a loyal following  : )

Mayb get a third opinion to help u decide and know u must be comfortable with the dr u choose....and only u can make that decision.

"selma"

[northernstarmn]

WOW I never actually heard of having a tonsilectomy for CM surgery not saying places dont do that i just never heard of it before- As for the c2 being backwords I dont think mine was I dont recall anyone saying anything to me about it anyway. Sorry I cant be of more help- maybe some others have the answers.

its interesting you seen 2 people who have different approaches to the same surgery!

Good Luck