Can cerebellar tonsils retract overtime?

[CarlinaM]

I have had horrible headaches and neurological issues for as long as I can remember and was never able to get any answers. In 2011 I had an MRI in which they found a 4-5mm tonsillar  ectopia. I was told it was too small to be causing my symptoms and to make some life style changes. I went on a gluten free diet and tried to be healthier with quite a bit success. I went from having daily headaches to one every couple of months. Now, even though I have not made any drastic changes to my lifestyle I am starting to have symptoms more frequently. I had a MRI last week (with a different Doctor, because I moved) and the said it was normal with no tonsillar ectopia. Has anyone else had this happen?

[LittleBarb65]

I believe you don't feel better because the size of your malformation doesn't matter!
If it's impacting your daily life dramatically, then you may want to consider having the decompression surgery done, by a Neurosurgeon who specializes in Chiari. I feel you should get at least 2-3 opinions if you can. Each surgeon has their own way of doing it and you definitely want to make sure you check out ALL OF THEM!! Do they have any lawsuits pending against them? Are there any medical conduct complaints filed against them? It's important to ask how many surgeries they have done & how many do they do in a week? Just because someone has done the surgery before, doesn't necessarily mean they're a specialist! If ANYTHING feels off...RUN!!

[echo2400]

Diagnosed as an adult and recent MRI shows 5mm when 15 years ago it started at 11mm. I don't feel any better.

[selmaS]

  I know Dr Oro did use the change of diet...(paelo sp?) to help or see if it helped and if not would do surgery....but since you said you experienced improvement at the time I am sure they did not consider it an issue..BUT since having continued symptoms now you need to be seen again....size is not the definition of Chiari.....

Do you have copies of your MRI's?

If not contact the facility that did the studies...not the Dr as they charge but the facility should make them available to you along with copies of the report.

[CarlinaM]

I'm planning on getting a few more opinions so I asked then to give me a disk and write up from the most recent one as well as my first MRI out of state. I was looking at the write up and it said right there that there was a borderline cerebellar tonsillar ectopia! (Although they did not list a measurement) They told me over the phone that everything was completely normal which was what led me to believe it had retracted! Needless to say I'm going to look into some other doctors

[CarlinaM]

I saw Dr. Coester initially who then referred me to Dr. Oro. He was the one who said it was too small to be causing the problems. The diet they suggested really helped until recently. I may try the doctor in SD. This has just been a very discouraging process. I know there is something not right but can't seem to get any help.

[thatredhairedgirl]

DO NOT let any doctor tell you it is too small to cause any problems! A 1mm herniation can cause more problems than a 15mm! Every Chiari patient is different and it kills me to see these doctors doing this to us. Do not let anyone down play your symptoms and how you feel. Get a 2nd, 3rd, 4th, however many opinions til you feel like you have enough information and feel comfortable. Also I've never heard of it retracting (it may be possible but I've never seen anything about it in anything I've read) but it can and will fluctuate up and down is what I've always been told and what I've read. So my first MRI was a 4.5mm and then my second one was smaller and my third was 2mm. It's just about catching it at the right moment which usually doesn't happen for some. Have they done a test to test the flow of your spinal fluid? Look up a 'Syrinx'. A lot of people with Chiari have a Syrinx too and they can cause pain and do damage, I have Chiari and 2 syrinx.

[selmaS]

  We do not have any listed for your state but have one in SD.

Keep in mind the list id here for you to research and is not meant as a referral nor an endorsement of those listed.


SOUTH DAKOTA

Dr. Ralph Reeder
Sioux City, South Dakota

One of the Country's best Chiari Dr was in CO but he retired to teach other Drs you might be able to call for whom he would refer you to. There is one other Dr I am not well informed of But Dr Oro would be whom to call for a referral while researching the other Dr listed.

COLORADO

Dr.Hans Coester
University of Colorado
Formerly
Poudre Valley Health System
970-495-7421
Fort Collins, CO


Dr. John Oro
Chiari Care Center
Aurora, Colorado
(303)-481-0035

[CarlinaM]

That would be great! I live in Wyoming and there are not a lot of options in the area so some names would be really helpful

[selmaS]

  Hi Carlina and welcome to the Chiari forum.

Yes it is possible to get different results...BUT it does not mean the tonsils retracted it could be the MRI was done differently.

The best way to explain this is this way.....

Imagine the base of your skull like an upside down pear....if you take a slice of the left or right side the piece will be small....but the middle slice is larger.....so it really depends on the strength of the machine and the slice that was taken....

The only way tonsils might retract is if they were low lying due to a head/neck trauma....

Chiari is the malformation of the skull and it also does not matter how long it is...some small herniation's have caused more symptoms and distress then longer ones...it can be the  width of the tonsil not the length.

Finding the right Dr is key! If you need help researching Drs, let me know and I will give you names to research.