Triple Cervical ADR Revison?

[ambiguity]

Dear ADR Friends,

It has been several years since I have participated on the site. I had a triple cervical ADR at levels C4-5-6-7 in 2004 with Rudolph Bertagnoli in Germany. It was not long after the procedure that I knew something was deeply wrong. The only good thing that happened was that I had enough stability to be able to hold my head up for periods of time and I was responsive to pain medicine for the first time in a long time. Back in the states, I followed up with Dr. Regan and it was relatively clear by imaging studies that the top level, C4-5, was pulling hard to one side and my head had an extreme tilt to it. No one was ready to jump in there and do anything about it at the time and I subsequently became pregnant, so I mustered up the courage and strength to hang on during the pregnancy and to raise my youngest daughter who had come as quite a miraculous surprise. She is now 5 and although it has been enormously difficult raising her amidst ongoing severe chronic pain, I have persevered the best I could.

Now that she is in a good place and my pain only worsens with time, I am back at the diagnostics looking for answers. I've had 4 consults with 4 of the best surgeons on the West Coast and a different take on my situation from each of the doctors. I have leaned most heavily on Dr. Delamarter and Dr. Kropt's opinion at the Spine Institute here in Los Angeles simply because of their vast experience and knowledge around ADR issues. They are advocating for a complete revision, to fuse all three levels. Dr. Delamarter does not believe that someone with my type of hypermobility does well with the motion that artificial disks supply. I do concur and am still having trouble crossing over the decision bridge. I had originally thought that perhaps just one of the levels might need fusing and I hate to give up my ADRs that I fought so hard for. I always liked the idea of preserving the levels above and below and the concept as a whole. But they remain adamant that a partial revision would merely be a guessing game as there are not any diagnostic tests to isolate which level (s) is generating the most pain.

I am reaching out to the ADR community to ask others about their experience with revision surgeries, especially those of the cervical spine, but not exclusively. I am also available of course to answer any questions one might have related to my own story.

I have deep deep midline pain right inside my neck seemingly at those levels, with more pain right beneath my skull. Sadly also, I suffer from chronic nerve pain on the back of my head from multiple chiari surgeries. This pain is not expected to be effected at all by a fusion surgery, although there could be indirect benefits simply from leading a more active live, etc. that can help with this type of pain.

Dr. Delamarter and Dr. Kropt remain, at least in my eyes, on the cutting edge with regard to spine surgery as a whole and have tremendous success rates with fusions, even triples and quadruples due to their techniques and added components of surgery that address each patient individually. I do trust them, but with my history of chiari surgeries (brainstem compression), they simply cannot align my experience with anyone else's directly as clearly my pain condition as a whole is markedly in a class all by itself. Joy.

My gratitude to all of you for caring and sharing. I am in awe of the human spirit that keeps us putting one foot in front of the other. I look forward to connecting with you. Peace and may you have many wonderful days in front of you.

[Harrison]

So sorry to hear of your agony. You have been an amazing parent and inspiration to many in your grueling journey! Some quick thoughts (as an admin & more):

- have you posted before under a different screen name? Pls let me know here or by PM. We can fix that if that is the case.

- if you search within this community, you will find other members with Chiari spine issues. Have you reached out to these members? Read their posts?

- have you had any luck contacting other people and orgs that focus on Chiari malformations, e.g. this helpful patient? Christine has published a list of docs who specialize in Chiari, have you already reviewed this list?

None of us can advise you on your next steps, but hopefully give you some other ideas or information to consider. For example, do you suspect that the source of your pain is inflammatory (respond to different classes of anti-inflammatories) or mechanical? Both?