Brain sinking?

[608lion]

I sent my pre and post op MRI's to Dr.H. The office called me today and they want to do a brain and lumbar MRI. My brain is sinking! Can any one relate to this?

[selmaS]

TCI has a questionnaire  http://www.chiariinstitute.com/pdf/3-TCS%20Screening%20Tool%20101608.pdf

Check this out and see what all u may say yes to....and the fatty thing is a telltale sign too!!

Look forward to ur update

Good luck

"selma"

[northernstarmn]

thats probably why your sinking then....i am curious to hear what they will do.
you are going to the right place. i wish you lots of luck!!...
Lisa

[608lion]

Thanks all!! Just wondering if we will ever feel good again!!!
northernstarmn, yes Dr.H is Dr. heffez. I can't wait to meet him!! They bumped it up to to the 21st. I don't have a plate they used my own tissue.
Selma, I don't have a dimple but I do have kind of like a fatty thing. I do have IBS and have not had any of the tests for TC. Dr. H I guess just would like to rule that out. The nurse said it could be that they took too much bone the first time.
I wish you all well and will keep you updated!

[*Stormy*]

Sorry to hear that you are having further complications. I don't have much to add in the way of advice as I haven't had my 6 month post op MRI yet to compare with. Good luck on the 28th...I hope that they get something figured out for you!

Carolyn

[northernstarmn]

hi, yes dr.heffez is whom i am speaking of,  check your messages :)

[survivor08]

Is Dr. Heffez your doctor? I sent an email to his office Friday and I got a response today saying that he has agreed to reveiw my case and that he accepts my insurance!  Woo Hooo!  

So can you tell me about him?  TCI said I needed surgery but they dont accept my insurance.  

I also got response back from Vanderbilt University Medical -cant rem which doctor- but he too said he would review my case.  Vanderbilt is abotu 5 hour drive for me so closer, but I will go where need be.

[northernstarmn]

Oh i forgot to say  he called it sinkage and said it would be worse if i didnt have the plate in my head, he also said some sinkage is normal....

I am wondering- did your NS put a plate in your head?

[northernstarmn]

Well honestly right now i am in some pretty good pain...but i think its related to the cervical stenosis and not the chiari.(dr H says its either the stenosis or the trapisoid muscle causing me problem)...my neck is very painful as is my left shoulder and down to elbow in left arm..I also have a pulling feeling but its in the neck and mid-upper back..
I havent had that vice feeling since November and I hope i never have that feeling again...that was due to the Hydrocephalus tho'
9 weeks i think i would have gone to his office and said HELP ME NOW!!
thats crazy that it takes that long to get back to you...

By Dr,H do you mean Dr.Heffez? You will really like him if thats who you mean.

Take care
Lisa

[selmaS]

Hi....I think sinking and slumping r the same thing...I could be wrong...but I really think it is the same.

U said u think u may have TC...did u have the urodynamics testing?.....do u have a dimple on ur  lower back?....bladder / bowel issues?

When was ur last MRI?...do ui know if ur tonsils retracted ....if not, it is possible to still have chiari symptoms.....

"selma"

[608lion]

LOL!! Timing! My NS nurse that did the surgery just called me back!!

[608lion]

Are you feeling alright? I have this pulling sensation and it feels like my head is in a vice. My NS that did the surgery said it was an adequate decompression and any thing I was feeling was not from chiari. I have been trying to get a hold of him for the last 9 wks with no luck! I sent my films last week to Dr.H and they got back to me yesterday! They seem to be on top of things..... so is sinking and slumping different?

[northernstarmn]

Yes I have that "dent" I told my son i have a hole in my head

No one has said anything about my brain slumping tho, I guess all the scans were normal dr.H seen every scan I had done since decompression surgery, when I went to see him last week he said its all Ok...

[608lion]

Thanks all! They said something about maybe TC could also be pulling it down. I see him on the 28th, will keep informed!
northernstomn  do you also have the dent in your head?

[selmaS]

Thank u Molly...yes Cerebellum Slump...and it does happen after surgery....I am sure the excess fluid held the cerebellum in place.....and once it was redirected elsewhere it allowed for the slump to occur.....

  One of the serious complications, whose frequency is not well established, is what is known as cerebellar ptosis or slumping.  Decompression surgery involves a craniectomy, meaning that a piece of bone is removed from the back of the skull which covers the cerebellum.  In some people, if too much bone is removed, the initial benefits of the additional space that is created gives way to something worse.  
     Namely, that the brain no longer has the support it needs and essentially slumps down towards the spine.  This results in the cerebellar tonsils again herniating and the tissue of the cerebellum can become compressed against the brainstem and the back of the skull.  Treating cerebellar ptosis can be difficult because removing even more bone also removes more support and can exacerbate the problem.  

[soccero]

slump*

[soccero]

I think what ur talking about is cerabellum slum ( sp?)
Molly

[northernstarmn]

not sure what you mean exactly but  i have sinkage AFTER my decompression surgery
and what is weird was 19 days after decomp i had issues with CSF buildup and needed a shunt anyway- the "sinkage" didnt happen until 6 weeks after getting the shunt put in and suffering from LOW pressure (CSF fluid) after things starting shrinking inside-thats when i suffered from the "sinkage"

[selmaS]

Yes there is a situation where too much bone is removed during a PFD and laminectomy (sp)
I know there is another term for this...sorry, I can not remember at this time....

"selma"