Chiari Malformation Community
cerebellar ptosis/ brain slump
About This Community:

This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

cerebellar ptosis/ brain slump

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
Related Discussions
6 Comments Post a Comment
Blank
620923_tn?1366319552
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"
Blank
Avatar_f_tn
My daughter has cerebellar ptosis. The neuro is not recommending any surgery due to instability issues it could produce.
Blank
Avatar_f_tn
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.
Blank
620923_tn?1366319552
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"
Blank
Avatar_f_tn
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?
Blank
620923_tn?1366319552
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"
Blank
Post a Comment
To
Go
Blank
Weight Tracker
Reach your weight goal faster
Start Tracking Now
MedHelp Health Answers
Top Neurology Answerers
620923_tn?1366319552
Blank
selmaS
Allentown, PA
Avatar_f_tn
Blank
Viva001
Chapel hill, NC
1306714_tn?1327260680
Blank
linnielou232
muskegon, MI
999891_tn?1361567064
Blank
rod44
Cork city, Ireland
4816750_tn?1368808270
Blank
frankie_rush
New Tazewell, TN
1925822_tn?1333709217
Blank
irislita
RSS Expert Activity
1741471_tn?1349564002
Blank
Parkinson Awareness Month: Parkinso... Blank
May 10 by Michael Gonzalez-WallaceBlank
233488_tn?1310696703
Blank
NEW STUDIES ON PREVENTING PROGRESSI...
May 08 by John C Hagan III, MD, FACS, FAAOBlank
2126606_tn?1346348724
Blank
Heroin Use in the U.S.
May 08 by Clare Waismann Kavin, Blank