I've had Klippel-feil since the whom my Dr who is amazing I've been seeing him for 10years and have been getting MRI and he said Im not going to fix something that isn't broken. I get MRI every 2-3 years the cyst has I'm bigger so he's going to go in and drain it and take the pressure off if I were any of you patience don't ever get the fusion fixed because that's the wa y you were made don't go against that it is the cyst. Look up Dr NG in London Ontario. Always fight for your own body and you know your body and the pain is real remember thi yndrome is rare. Im losing my sense of touch because of nerve damage I fumble with my hands all the time but if i trick my brain and put gloves on i don't fumble and look at all types of medicine practice and belief.
It's so hard to get off the meds, you have been through a lot...I wish I could get an mri, but with my spinal stimulator an mri is out of the question because of the magnet :(. Don't worry about typing on, I do the same it's nice to talk to people who understand.
My first fusion was on 2003, that didnt fuse so I had an anterior fusion where they went in from the front. That was a seriously rough surgery. That was at L5-S1 then the levels above wore out because they were taking all the stress and I had to have those taken care of.
It's called the domino effect and from what ive read its a pretty common occurrence
I'm fused from L3-S1 and just had an mri because I was in alot of pain that didnt seem like post op pain. They found that anscrew was put in wrong and instead of going into the vertebrae it goes into the soft tissue, not to mentiin L1 is herniated so who knows whats next.
I just joined this site and posted in another section saying I was going to quit taking my meds but the pain is just too terrible. I only made it to the 2nd day :(
I know you didn't ask to hear all that, just typing away I guess
I'm going in to the Dr in 2 days I hope they can give me some answers.can I ask you how long ago as your first fusion? Thanks
They took a piece of my hip and used that instead of cadaver bone. I still have pain at the graft site.
It seems all of the Dr s want to cover themselves from prescribing to many narcotics. My Dr told me I am "lucky" ha ha because I also have RA so I can still get meds. I think I might need to switch to a pain management Dr if I don't get relief soon. :( from my surgeon. Thanks for your input.
Wow 5th fusion! I don't know if I would do it a 2nd time. You have a lot of courage. Can I ask you if they did a bone graft at all? It seems that a lot of my pain is in my left butt cheek where they took the bone from and now it's starting to go down my leg a bit. Thanks
I just had my 5th fusion at l3-l4 in feb of this year, my pain management tried cutting my meds almost in half at 2 months as well.
I tried it and was back in their office alittle over a week later in alot of pain. They put me back on my original post op dosage.
of course there are failed surgeries. i have heard many of them. i cannot believe that he expects you to be pain free so soon. wow. i would really have a strong talk with him or see another doctor