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

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Post surgery

I had surgery for a Arnold- Chiari I Malformation in 1999, it was down to the level of C2 ( i have no idea what that means).  I must say that after the surgery my headachs were very limited and not as intense, so for a couple of years, I thought everything was fine.  Not true.   No one ever explained what could happen after surgery.  As the years went on i noticed little things happening.  Sever learning dissabilty, chronic fatige, ADD, with each passing year my memory worsens. Neck and shoulder pain.  So I guess my question I would like to ask anyone who could help me or for anyone else who this is happening to.  Please, I feel like I'm at mt wits ends.

                                                Kim
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Hi Kim

I had surgery in Dec. 09 so it hasn't been as long for me as it has for you but...I too have realized that things are a lot different then what I had hoped they would be post op. I have read some statistics and one of them is: out a group of 300 people that had the surgery, 89% said right after the surgery that is was successful but after a year when they were surveyed again, that number went down to 69%. To me, that is a staggering difference and we have a lot of people like you that post here and verify that.

One big issue, is the lack of aftercare after surgery, I know I was really surprised that there was no follow up for me even though my gait is still quite affected. It took me a year and a lot of pushing to get into a neuro-rehab facility. In my opinoin, I should have been sent there as soon as I recovered from surgery!

There is also the chance that things have changed...have you had a recent MRI? If not, I would go to your Dr and insist on one. These requests are rarely ignored if you straight out tell them your concerns and ask for it. You could have a build up of scar tissue or have cerebellar slump...so this needs to be checked out.

You did have quite a herniation if it went down to C2....so you should be having regular follow ups.

I hope that helps a little:)
Carolyn
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Hello, I tried to answer earlier and lost my connection.  I agree Carolyn that you need to have another MRI and see what is going on at this point.  C2 means the 2nd cervical vertebra.  The 1st starts at the top of the spine.  There are 7 which join the thoracic spine.  That is a pretty major hernation.  Was your surgeon a Chiari specialist?  It is possible too much bone was taken out and you are having brain slump.  Or as Carolyn suggested possibly scar tissue. Either way you need to see someone and have another MRI to see where things are now. We have a list here in the forum of specialists other members have used and liked.   It maybe worthwhile to see a specialist if you havent.  

I hope this helps.
Pam
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Pam,

         I just had an MRI 3 day's ago, the doctor will probably get the results today sometime.  Or maybe he did already and found nothing??  If that is the case, then what is wrong with me??  Why do I feel like I'm walking in a fog and have a memory of a rock? Not to mention a constant pain and stiffness in my neck and schoulders???  I guess I wait and see.  I will keeep you posted.  Thank you for responding.

                                                    Kim
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