You mentioned you private paid? My insurance won’t cover either…so may be willing to do what you did to get the treatment I need.

I have Bertolotti syndrome as well. Like you, I was athletic, an avid runner and hiker, and a career in the Air Force before this happened to me… I lifted my arms to take down the curtains on my PCS move and ruptured four cervical discs at once in Feb 2020. It was excruciating. I wasn’t able to run after that anymore, I started doing long-distance walking to avoid anything high impact. I was 35 when that happened. A cascade of injuries and issues have happened since that event, then after three years and nine months, I was finally diagnosed for everything that was happening. I have SLE, dysautonomia, hypermobility joint syndrome, sacroiliac joint dysfunction, DSD, and Bertolotti syndrome, and still the several cervical discs still messed up. My initial injury set off a flare in both SLE, dysautonomia, which also caused DSD. That was a struggle because I didn’t have a diagnosis for such a long time. Bounced around to so many doctors. A year later, on 5 Oct 2021, I took one step about 3 1/2 miles in on a trail and my left SI gave out, I took another step, and my right side did too. I hobbled back and have not been able to walk the same since. It was debilitating pain. I was diagnosed with bilateral sacroiliac joint dysfunction. After two rounds of physical therapy and three rounds on each side of ESI‘s, nine months later I had the first out of both SI fusions. Immediately after the left fusion in July 22, I had a new pain that shoots all the way down my left leg to my foot and has not turned off since. My right side went smoothly 9 months later, but I still suffer from the left. I finally received a diagnosis of Bertolotti syndrome after numerous X-rays and a few MRIs trying to determine the cause after surgery. I was told that I had Bertolotti syndrome, and that the alignment after my fusions caused my Bertolotti syndrome to show symptoms. My surgeon has never performed it before, but said he would do some reading on it to do the surgery. Since he’s already done two spinal surgeries on me, I thought I would stay with him, but since I’m now forced to medically retired from the military, it will process a year short of my 20 year career, my insurance will no longer cover all of it and I’ll have a co-pay. That’s if it covers it at all since it’s considered an elective. So, I started to look for other surgeons that were experienced, and I found the doctor in NYC as well. His office told me over the phone that they don’t accept tricare. I understand you paid out-of-pocket. I know the surgery techniques are different for everyone depending on their level, but may I ask how much yours was out of pocket so I can have somewhat of a ballpark number of what I might be looking at? I’ve tried to find a range online but haven’t been successful. I’ve found numbers that are drastically different for similar procedures, ranging anywhere from 9000 to 90,000.
I’m sorry you’re still suffering from this. I wish you a speedy recovery with your nerves.
I’ve been worried about nerve damage this entire time too. I’ve had the symptoms of Bertolotti‘s since July 2022 and I’m nowhere close for the surgery yet. Apparently I am unable to have a surgery during the retirement process, so I have to wait until I’m a civilian which just prolongs the pain further, keeping me in a continuous SLE, dysautonomia, and DSD flare from the pain, and I fear more damage. My only wish is that I can go for a walk again. I’ve already come to terms with giving up high impact activities. But since all this is happened to me, I’ve mourned the life I had before, my independence, body, and self confidence, now I just hope for the ability to go out for a walk again one day. I’m 39 now and hope this can be resolved before I’m 40.