I am lost and scared

[Scaredzipperhead]

I was dx about 6yrs ago.  I have headaches and bad headaches pretty much daily.  I don't have any other bad sx though.  No syrinx, no paresthesias, but I can't bend over for too long, sneezing, coughing, exercise, all that I get the throbbing pressure in the back of head.  It is just the debilitating headaches.  DO I GET THE SURGERY?  I am thinking, after reading all the horror stories about having the decompression, why can't I just manage the pain through narcotics?  I've tried just about everything, but narcotics is the only thing that helps.  ??

Question 2: Has anyone had this surgery at OHSU?  My NS is Cetas.  I don't know really anything about him and want to know if there are any success stories?  He plans on a laminectomy of the C1 and not cutting the dura.  Too little and not enough?  I can't go through 2 surgeries?

Question 3: If you could go anywhere in the world to have this done and money was no object..... where would you go?

please feel free to contact me at: ***@**** or on here if you want.  I am just lost right now. and terrified.  My surgery is scheduled for 20 APR

[AmboySally]

Just curious if you ended up getting your surgery at OHSU? And, how are you doing?

[selmaS]

This is an older thread so the member you are questioning may no longer be an active participant on this site...you may want to send a PM (private message) which should generate an e-mail letting the member know someone is trying to ask a question.

[S_Chaney]

Actually, I have been on hydrochodone and MS Contin (morphine) for years to manage the headaches and pain of chiari. And it is moderately effective.

Finding a doctor to handle the prescriptions will be tricky though. The DEA has put a strangle hold on narcotics in an attempt to appear productive. My primary phy. has been with me through the whole process, back to the days when she was worried I was a hypochondriac =)  So she is very aware of just how painful chiari can be.

[selmaS]

  Hi and welcome to the Chiari forum.

Just wanted to start off with...we are all scare when we get this DX...so you are not alone there and I feel it is healthy to have a fear of the unknown.

  First surgery is only an option if you have a CSF obstruction since surgery is done to restore CSF flow....AND if you have other related conditions and do not get them DX'd or ruled out B4 surgery they can cause an issue during recovery....it is also important that you do not over do things post op to help minimize post op set backs.

When was your last MRI and CINE MRI done? Have you had MRI's of the thoracic and lumbar spine along with the brain and cervical spine?

Typically narco drugs do not help with Chiari symptoms especially since we can not be on them long term.....

As for not opening the dura, yeah that can cause short lived benefits only to need a 2nd surgery....If someone has used that Dr with positive results they would have added the name to our list....not being on the list does not mean he was not liked, it could indicate a member here has yet to be seen by him....so you may have to  research him further....but follow your gut.

  We can not post personal contact info, so I have tried to reply to all your questions here....As for where would I go...I went there....had surgery 5.5 yrs ago and would do it again with the same NS....TCI, NY.