sagging tentorium brainstem and cerebellum

[samsam5mom]

Another question from a concerned mom..... ok so I have been on here several times. My son had decompression surgury december 29th 2014 he was doing really good for months then the headaches started coming back so we brought him back to neurologist they did mri said the surgeon did a "fairly adequate" job (the was doctors words) said there is plenty of room now so fluid flow is good. But then told us that the tentorium is sagging causing traction which he thinks is causing headaches. Have u heard of this? Then read his notes and they also said his brainstem and cerebellum are also sagging. Told us they think may be from him jumping and landing hard? Told us to keep him hydrated and hopefully that will help. So another question is did they make the hole too big?? His doctors are at mayo clinic in rochester mn. Should I find another doctor to review his case?

[samsam5mom]

I dont know if I am doing this right but selma said u had some same problems and issues as my little boy is having. Can I ask who your dr is? I need a second opinion....

[selmaS]

  Well I know the NS's at TCI in NY,  and Dr H in MD.....Dr B, in NYC (formerly w/TCI) ...... Ask zygy2 who her Dr is....as she had quite the ordeal with this issue post op.

[samsam5mom]

Again thank u so much selma!! I guess I would like names of drs that u think have dealt with brain slumping. I will do whatever I need to to make my son ok!! We always take a big family vacation each year next one might have to be to see specialist.... I feel deep down that I need to do this!
Can I ask u something else? Did or do u have a lot of neck pain after surgery? Sams neck hurts a lot and even if he wont tell me he sits with his head tilted to the right most of the time

[selmaS]

  I added the list for your state on the other thread....if you want other states/locations let me know which ones you would like...

Yes, the best thing is to call each  Drs office and see what info they would require and go from there....you can ask about INS and what cost it will be to you should you go to them etc...and  what charge to review the MRI...some do this for free some charge a nominal fee.

[samsam5mom]

Thank u! Could u put the link to the trusted drs on here for me please? Do I just start calling to see if one will review his case? Im a little worried about how much it will cost but my sons life is way more important to me

[selmaS]

  When this sag occurs, it can  put pressure on the brain stem as well as the spinal cord...and could create an obstruction to CSF flow  all the same reasons for having surgery in the first place....so it can cause issues and symptoms...and to let it go can lead to the same issues as not having the surgery.....

Do try to find  a Dr that is well experienced with Chiari.....as you will want another opinion and since he has had surgery most NS's will not even consider looking at him....but a true Chiari specialist will.

[samsam5mom]

Thank u for taking time to answer me. Will his brain continue to sag? Will this eventually cause permanent brain damage? I will continue to try to do my own research too.

[selmaS]

  Hi.... have heard of cerebral ptosis which is due to chipping away too much bone and the area is too large and then the  cerebellum and rest of the brain sags....which leads to another name for this ...brain slump.

As for the term tentorium - The tentorium cerebelli or cerebellar tentorium (Latin: "tent of the cerebellum") is an extension of the dura mater that separates the cerebellum from the inferior portion of the occipital lobes.(source wikipedia  https://en.wikipedia.org/wiki/Tentorium_cerebelli  )

So in my opinion that it is the same as brain slump or cerebral ptosis.....I may be wrong....but I am sure it has to do with how much bone was chipped away....and yes I would forward his MRI's and OR report to a different Dr.