cerebellar ptosis/ brain slump

[journey119]

Hi, I had decompression surgery in 2005 and a cervical fusion in 2006. I am now dx w/ cerebellar ptosis.
I went to see a different neurosurgeon last week. He said due to the fusion hardware it is very unlikely a crainoplasty or box expansion could now be performed. I went undx for 20 yrs. Finally thought I was going to get my life back now I am worse than before. The pain and head pressure are horrible. the pain never goes away. I have been on several narcotics and nothing works.
Does anyone have this same condition? I would appreciate any feedback...please
                                                        journey119

[selmaS]

Well I would keep bending at a minimum....and watch how she bends...at the knees...not the waist....of course, we have to listen to our bodies...and it is hard since u r dealing with ur child.....

And as far as management goes, I only know of the surgery to correct the "box"......

The best advice in the meantime...keep a journal of her activities and her symptoms....it may help the drs see  and u which activity she may need to avoid ...even if she is eating something that is causing a side effect....it may be a bit of work, but overall it will help.

Once u get back to the dr....the right dr...u will get the  answers as well as some relief for ur DD.

"selma"

[thehunter]

Thank you Selma! This certainly answers my question! Now do you possibly know of any information about further limitations for cerebellar ptosis or the management of it?

[selmaS]

Hi and welcome to the Chiari forum.

From everything I have read, this is something that needs to be looked at...and u r right she should have some limitations...we do have a list in the Health Pages as to activities to avoid with Chiari  and   Syringomyelia....http://www.medhelp.org/health_pages/Neurological%20Disorders/Activities-to-avoid-with-Chiari-and-Syringomyelia/show/986?cid=186

I am so sorry  u r frustrated and that ur DD is going thru so much.....

Know we r here to listen and share what we do know : )

"selma"

[thehunter]

My 10 year old has cerebellar ptosis. The neurosurgeon says we should manage her care without surgery due to instability issues. I am having a very difficult time here because he didn't give us exact limitations and he is no longer available. We went to see another neurosurgeon and he says she should have NO limitations. I don't think that is quite right either. Even just the diagnosis of chiari and hydrocephalus produce limitations. I cannot imagine just doing anything now with the cerebellar ptosis added as a diagnosis.

[thehunter]

My daughter has cerebellar ptosis. The neuro is not recommending any surgery due to instability issues it could produce.

[selmaS]

Hi ....welcome to the chiari forum.

Since u went to a NS that was not the original surgeon I am sure it is bcuz of ur dx.....and the reason the second dr refused u is not bcuz there isn't something that can be done, but many will not take on something started by another surgeon...so, u do not have a "virgin" back or neck.....there r some chiari specialists willing to help those that have been worked on b4....Dr Oro in CO and TCI in NY will help when most others will not.

From what I understand ur condition is the result of ur decompression and the area was made too large and it allowed ur cerebellum to fall back down.....u need a dr that will use possibly the titanium mesh plate to hold it up in place.

There may have been one other member that I can remember, I will see if I can find the info....
let us know what area u live in and we can try to find a way to get u help.

"selma"