Brain slumping

[Tammers17]

Hi! I had surgery one year ago to correct Chiari. I managed to get about 10 of relatively pain free life. I was impressed with how good one could actually feel. It was a whole new world for me. However, I began to have a major problem with depression first, then complex, acute migraines, followed by head, neck, and spinal pain. It's back and it's so much worse. My right arm is in pins and needles all the time, I get drive heaves when I laugh too hard, or the pain gets too intense. The neurosurgeon who performed the surgery did an MRI two weeks ago and his nurse practioner said they reviewed the MRI and there is no need for further surgery that I should see a neurologist in my area for help with the pain. I sent the images to Dr. Bolognese in NY and his PA wrote back to tell me that I have a herniation of the tonsils (though I think he meant to type cerebellum) through the craniectomy. This is what my Chiari sisters said on my FB group site and were correct. They also mentioned my cerebellum tonsils may be growing into my cerebellum. After all that I have a few questions:
1. Does anyone know who the best Chiari Surgeon in the US is?
2. What are the symptoms of brain slumping?
3. Are there any warning signs that it could be fatal?
4. Can some insurances provide nursing care and assistance at home before and after surgery?
Thank you for any help on these questions.
Tammy

[Feathur]

Hi Tammers17,
I know this post is more than a year past, but I'm wondering how you are doing now? What did you end up doing for your Slumping? I have spent the past 6 months, progressively worsening to the point that I'm hardly able to get out of bed. I was originally decompressed in 2010. My NS is very conservative, following a post op stay for hydrocephalus, I recovered very well.  
Unfortunately, over a few years time, I developed an over growth of scar tissue that required surgery #2. This surgery was done by a diff NS, who was not nearly as conservative in approach, but had highly respected reviews & was at the forefront of support for the Chiari Community.
It has been 2 years since my 2nd surgery & I am literally dreading each & every day that I have to attempt to function...
Hoping you got some answers & relief...& you have some quality of life back.
Hopefully you get this msg...
Thank you sincerely,
Heather

[Tammers17]

Heather, are you still on here? I'm going on a third surgery. I has a titanium mesh plate installed. It broke, so now I need another surgery. My neck is now unstable too. Cranial cervical instability. I'll need a fusion too.

[selmaS]

  Hi and welcome to the Chiari forum.

Since this is an older post you may want to try and contact this member with a PM (private message)...this will  alert the member via an e-mail that someone is trying to contact them.

May I ask, did they rule out ALL related conditions for you?....EDS etc...

[Tammers17]

Thank you both. The pain now keeps me laying down because bring vertical causes too much pain and pressure.  This is so painful and exhausting.  

[Elisaandbucky]

Hi Tammy, I can concur with what Selma tells you above about Drs Bolognese, Oro, and Henderson being excellent specialist in chiari. I sent my initial MRI showing chiari to all three doctors. They all got back to me. However, I chose to go with Dr B - and I have the utmost confidence in him and his care. Selma tells you above in her response the definition of brain slumping (cerebral ptosis). As I understand it, it is usually a result of a surgeon removing too much bone. On a really good chiari website (ConquerChiari.org), there is some pretty clear information about it that also explains what can be done to fix it. One the website, there is some information about a group of surgeons from UCLA (Heller et al.) who developed a surgical technique that may alleviate the problems associated with cerebellar slump. I think you can get some more information from going to the website. In the search bar at the top of the page, type "cerebellar slumping." See what you can find out. I hope you get some answers from Dr. B's office.

[selmaS]

  Hi and welcome to the Chiari forum.

It is possible to have brain slump and feel many of the symptoms you had b4 surgery.....many of what you described....

Cerebal ptosis or brain slump occurs when the NS takes away too much bone from C1 and C2....this makes the area too large.....and slumping occurs which can put pressure onto the brain stem.

Dr B who already has some of your info is a good choice, as are some of the other NS's at TCI, or Dr Oro, Dr Henderson....there are a number of top Chiari Drs....it is up to you whom  you feel more confident and comfortable with and who your INS will work with and last where you can get to logistically.....

For any one with Chiari...regardless of brain slump....if they develop breathing difficulties or drop attacks those are of a more serious nature as well as breathing issues.....so if you have any of those go to your local ER...and find a new NS to help if you do have cerebral ptosis.

Everyone has different INS, so to find out if yours offers the help you mentioned , you will have to call your provider to find out....but I have heard of some that did get home care...