Cerebellar tonsillectomy

[Krystinamarie]

I have pretty recently been diagnosed with chiari 1 and because my symptoms are so severe the neurosurgeon I was referred to would like to schedule surgery quickly. He is wanting to remove the cerebellar tonsils completely. I have done a lot of searching for information or stories on this specific procedure but I am only finding information about decompression surgeries. Have any of you had the tonsillectomy or heard anything about it?

[selmaS]

  No worries the only way to get answers is to ask, so ask.....

Yes a CINE MRI is needed, bcuz not all with Chiari have a CSF obstruction, and surgery is done to open up the obstruction, if u do not have one, u do not need surgery....as it will not help.

It is possible that ur symptoms could be coming from a related condition so that is important as well to have testing to rule them out, and know which ones u may have,.

Recovery is ongoing....I continue to see benefits 4.5 yrs post op....I heal slowly as I do have EDS.

I still have some things I no longer do, or only do on occasion as I do have other related conditions that affect how I feel, but my drop attacks have stopped and many of my Chiari related symptoms have eased.

Yes, I had major sleep issues, and I went to a sleep clinic to determine if I had sleep apnea, however the Dr there did not feel I needed the testing and was a waste of my time, I wish there was a diff Dr in this area I could have gone to, my PCP set up testing later and I had sleep apnea ruled out and my PCP put me on an antihistamine b4 bed and that has helped me with my sleep issues.

  For the best results post op, make sure ALL the testing is done for ALL related conditions as they tend to be a reason for post op set backs.

[Krystinamarie]

Sorry for all of the questions but did you have problems sleeping before your surgery? And if so did you notice any improvement after?

[Krystinamarie]

I have been told by a few doctors that patients with less severe symptoms are able to treat their symptoms with medication rather than surgeries. Unfortunately that was not the case for me.

I have not had a cine MRI. Just a standard MRI and ct scan where they measured only a 7mm descent. Is that specific MRI absolutely needed before surgery?

And a normal life being where I am able to wake up on a fairly regular basis without having to limit myself to dark rooms and couches. As the symptoms have completely consumed my life any chance improvement on my quality of life would be a giant step in the right direction.


How long was your recovery? When did you start to feel like you were able to get out and do things? I have heard that some people feel great after a couple months and others it takes close to a year?

[selmaS]

  I had my surgery at TCI in NY and that is what I was told....plus I have read it in articles on line, I will look to see if I can locate a link....

Did ur Dr Do a flow study....with a CINE MRI?

Medications will not help a neurological condition like Chiari......but surgery can lead to more issues if u do not test for ALL related and non related conditions with similar symptoms b4 u consider surgery.

Keep in mind surgery is not a cure....only a means to slow progression and restore CSF flow, so this is y I ask if u had a CINE MRI.

Not sure what u mean by a normal life as many of us have had to adjust to a NEW "normal",..,..Chiari is life altering....

I understand u need and desire to find something that will help as I search for yrs as well....and the thing is I am better, but  I can not say I am back to "normal"....and I was brought forward to a NEW normal for me.

[Krystinamarie]

May I ask where you got this information? I am still having no luck with my search. The neurosurgeon I am currently scheduled with has come from a chiari institute in New York and told me this was a procedure with an easier recovery and less risk of having to go in for a second surgery. I guess I'm mainly just trying to find the risks of removing them completely, as my pre op appointment is still a few weeks out.


My main symptoms include daily severe migraines with sensitivity to light and smell. Daily nausea and vomiting. Constant pain in head and back of neck. Dizziness. Tingling and numbness in my head and face and left leg. And on occasion a sharp pain similar to a pulled muscle in the back of my head accompanied by loss of vision.


I have been coping with these issues for several years now with no relief or help from several medications and therapies. We see this as my only option for me to have a normal life.

[selmaS]

  Hi and welcome to the Chiari forum.

The removal of the cerebral tonsils is an outdated procedure that is only done when and where needed and not done as a standard ne longer.

It may be the NS u r seeing is not a true Chiari specialist, and is a NS that does Chiari surgery....there is a huge difference...and u will want a true specialist as they do research on Chiari and have newer techniques and make sure u do not have related condition b4 u have surgery.

May I ask what symptoms u r having and why u Dr feels surgery is needed?