Experience with c1-2 fusion - Spinal Cord Disorders Message Board

mellowfish · 12-23-2004, 03:37 PM

Hi everybody. I am new to this board, and I am looking for some answers or similar experiences to give some much needed support to my father.

After dealing with bursitis/tendonitis in his left shoulder for so long, my dad was sent to an orthopedist (cerivcal/spinal specialist), who discovered that before anything could be done for the shoulder, IMMEDIATE c1-2 fusion was necessary. His vertebral foramen (hole in spinal column in which cord runs) was 17mm, normal is 22mm. Orthopedist said could have been a defect from birth; a simple whiplash could cause permanent paralyzation.

C1-2 fusion took place around May 11, 2004. Going in throught the back of the neck, a "wedge" was put in between the vertebrae with two long screws and a bunch of wire (cage?). Surgery went very well. The big concern now is the amount of pain he is having. After reading so many posts, severe headaches seem to be a pretty common side effect with this type of surgery. If he does not wake up with a blinding headache, he has it within 20 minutes of rising. The headaches start at the top of his spine and radiate through the rest of his head, and NEVER GO AWAY. This started two weeks post op, he thinks if it were not for all the pain meds he was given he would have had them much sooner. He says this is the worst kind of pain he has ever had (and he has been through quite a lot of physical trauma in his life). He has been to a neurologist and been given MRIs and CAT scans, everything comes back as "normal".

For quite a while he has been "immune" to ALL kinds of pain meds, nothing helps him. I am now talking to him about taking sessions in pain management, hopefully he can find some relief in that.

If anybody has been through this and can share or relate, it would be greatly appreciated. Also if anyone has had this done and experienced the pain and also has experienced relief from this pain, please let us know, --is this normal? --when will it end?--do you have any suggestions? Thanks.

kellyv · 12-23-2004, 05:42 PM

... deleted ...

mellowfish · 01-07-2005, 11:48 AM

Things have improved a little but not much, is there anyone who has had a c1-2 fusion?

dianaandbill · 09-27-2005, 12:50 PM

I recently underwent a C1-2 fusion and started having severe headaches about a week later. The headaches are unilateral and located on the top of my head. The pain is the most intense I've ever felt. I've been put on several medications that seemed to have helped slightly for about a month, but the headaches are coming back more intensely and frequently now. The medications I am currently on are Amitriptyline/Elavil-an antidepressant known for its effect on neurogenic pain, Soma (muscle relaxant), Xanax (benzodiazepine), and a couple meds for Nausea/vomitting that I have in conjunction with the headaches. I have been told that this pain is from an irritated nerve. When they do a C1-2 fusion, they have to manipulate and sometimes cut 2-3 nerves, which is why the back of the head often becomes numb after the surgery. I hope this helps.

mellowfish · 09-27-2005, 02:20 PM

Thanks so much for replying, dianaandbill, I hope all the pain you are experiencing will be very short lived and may you have a speedy healing process.

It has been well over a year since my dad's c1-2 fusion and his pain is just as bad as ever

.

He had returned to the orthopedist that performed the surgery and was told that there were no problems, the pain should go away as the bones knit in some more. The orthopedist then referred him to a neurologist (who just happened to be a patient of said orthopedist, having undergone a successful fusion surgery himself). The neurologist said that there was no physical cause for the pain, and it certainly could not be the result from the fusion surgery!

At this point, my father has been told by these two doctors that "nothing more can be done, just go back to work/deal with the pain as best you can". He should have taken disability years ago (all of his doctors at the time were pushing him to), but he flat out refused to in favor of working until retirement. He still continues to work with the incredible pain in his head. It had gotton so bad that he mentioned retiring early on disability to the orthopedist, and the dr said, "There's nothing wrong with you that you can't go to work every day," - this is among a myriad of other physical problems that leave him completely debilitated at times.

It's been suggested my father see another doctor, but all the specialists in his area either won't see his case and refer him to the dr that did his surgery, or they have already seen and referred him. It makes me so mad to see him suffer, and he's afraid if another doctor would find something wrong they would have to do another surgery (sigh).

I hate to have frightened anybody, but I don't feel it can be said enough that with this kind of surgery to get several opinions from completely unrealted doctors that are far enough away from each other to not have any conflicting interests. Regards.