Complications after 18 years of having Chiari Surgery

[Irene1421]

When I had chiari surgery they used skin from my leg to make a sling for my brain, that was 18 years ago. Can that sling start to give way through the years?

[desertstorm2009]

By the way Irene are you sure it wasn't a trampoline type he used to hold up the cerebellum? I know this has been used with some larger herniations.... Either way what ever was done needs to be looked at to rule out complications.... Make them listen :-) Lisa

[desertstorm2009]

((((((Kit ))))) and everyone else.... I know many of us have hurt or are hurting so bad we have thought of ending it or at least giving up out fight. As I write this tears roll down my cheek. I do understand. But I know one thing, we are meant to live and therefore we must find a way to do so. If a Dr won't help us we have to find one who WILL. We know our bodies better than anyone and we KNOW when something is not right. Sometimes when we feel the most alone, we're not, and sometimes when no one will listen we have to find a way to stand up for ourselves and be STRONG! Prayers and much love to everyone of us :-) Lisa

[selmaS]

  Hi and welcome to the Chiari forum.

2002, that is some time ago, have u had a recent MRI?.....Were u checked for ne related conditions?

EDS is one that many of us have in common and can cause HA's and many other similar symptoms associated with Chiari.....

Have u been to see Dr Oro since ur post op check ups?

[jbsamom]

Hi.  I have my decompression surgery in Feb 2002, preformed by Dr. Oro.  I have had headache on the same side at the base of my skull on the left side.   They are getting swears and doctors say its all in my head and there is no cause for my headaches.  I am getting so tired of being in pain.  They have tried pain blocker.  all that did it cost me over a $1000 and hurt like hell.  It did not give me any relief.   Has anyone experienced this?
Tish

[selmaS]

  I know what u mean, Drs well informed and experienced with Chiari are rare...and the ones that are out there r surgeons....

The biggest problem is surgeons do not DX, so u need a NL....and find one of them that knows Chiari and related conditions to know what testing to perform.

ICP, POTS, EDS.....there are several related conditions u may have b4 or post op.....

I am the community leader, not a moderator they have the job, I just help out...lol... I also had surgery at TCI and know what it is like to have to travel to get to a Dr....

No worries...keep us posted on what u find out and end up doing......

[Lyn68]

Thank you Selma, are you the moderater on this forum?  It's wonderful of you to contribute and make yourself available to answer questions.

I have bulging disks in my lumbar and cervical area from a sports injury, the pain from the disks when aggravated is very sharp and much different from the burning pain I'm experiencing in my thoracic area.  While the bulging disks are very painful at times, rest over a few days will help.  But the upper back pain is chronic and doesn't seem to be 'caused' by activity.  Remarkably I do get some relief when I can be horizonatal.  Because it appears to be positional, much like my original neck pain, I tend to think that it may have something to do with the Chiari.  Trying to explain that to my local neuroligist is somewhat like talking to a wall.  He's wonderful and I really like him but it's not the same as speaking to a doctor that really knows what Chiari is.

It's been about 4 years since I've had my MRI's updated.  I was scheduled to have neck and thorasic images done here in February but I cancelled thinking I may have to go back to New York.  I believe I'd be more comfortable having the doctors there look at my current condition.  I wish more doctors were more familiear Chiari, the travel involved to see a specialist is crazy.

It seems I've pretty much talked myself into the necessity of contacting TCI.  :)

Ruled out related conditions?  Are you referring to POTS or TCS?

Thanks again for your help.