Bertolotti's Syndrome: Looking for a specialist

I have lived in Florida the last ten years. I have Bertolotti's Syndrome which began as exterior right ankle pain at age 32. I did not get the diagnosis until age 37 and suffered terrible pain with all tests showing nothing wrong. No doctors in Florida were able to understand the condition and I ended up private paying for surgery with Dr. Arthur Jenkins in NYC, (yes my BCBS HMO would not cover and insurance won't recognize the condition as legit). My condition is much improved since my half fusion 10 months ago but I have pain with sitting and still use crutches when I have to walk further than 2 blocks. If I had been diagnosed and treated sooner, I don't think I would have had the level of nerve damage which I now still need to heal. I would not get surgery from anyone except Jenkins unless you meet a surgeon who can clearly explain exactly why you are having the symptoms you're having and why the surgery the surgeon is suggesting will alleviate your symptoms. Bertolotti's is EXTREMELY rare, do not expect your local (famous/well-known) orthopedic surgeon or neurosurgeon to understand the condition or know how to treat it. You're lucky if you're reading this post, getting the diagnosis is thr biggest hurdle then the other half is getting proper treatment. The jury is still out about how to best treat the condition but in all my research I determined that Jenkins seemed the most knowledgeable. I would at least private pay for a phone consult with him before getting a surgery anywhere else. This condition requires the patient to be SUPER diligent in finding appropriate care, not all surgeons are the same and back surgery is for LIFE. Read the book, "Crooked" before making a decision about back surgery. All that said I had to have treatment and am happy with my choice. Low dose naltrexone 4.5mg has been the most effective pain medication with fewest side effects that I have come across. It has to be compounded by a pharmacy, Skip's Pharmacy in Boca Raton is well-known for knowing the proper filler to use. Sorry to anyone who suffers with this condition, I was super athletic and healthy before, now I'm on crutches and have to use a standing desk and can only manage working part-time. If you're having nerve pain try and get treated before the nerve damage becomes more permanent if that's possible. Good luck!

Hello I’m in Wichita Ks. I was just curious if you found any help?

Hello I live in Wichita Kansas. I have had both hips replaced over the last three years. I was 46 when the first one was done. My back and pelvis stay twisted and rotated and the pain is intense and keeps getting worse. I’m seeing a spine surgeon soon but from a friends visit with him he probably won’t deal with this issue but will want to take out vertabre and fuse things if not a whole lot more. I’m looking for a specialist also. I’m willing to travel.

Have you tried CBD oil? It helped by daughter-in-law and she swears by it. In a cream form.

I have tried the forms that are trace amounts of THC since otherwise it is illegal here. I tried two different companies that say theirs is the best and give all the technical reasons why. The oil under the tongue worked for about two weeks. I’m just so tired of the pain. It’s exhausting. I wonder if vaping it is better. Probably need to research it. Thank you for the idea. I appreciate it.
I contacted Dr Arthur Jenkins from New York and will be doing a phone consult. Hoping he can give some direction. The lady I spoke with did say he is an expert with this condition.

What brand CBD has your daughter in law found that actually has helped her pain

Hi Jaes, I just saw your post from 2016. My daughter has just been diagnosed with Bertolotti's syndrome; for the last nine years, doctors said it was Ankylosing Spondylitis (which she has) pain but nothing seemed to touch it though she's on multiple biologics etc. Now we are looking for a spine surgeon with Bertolotti experience in the NYC area and I wondered if you had any names to share? And any experience or suggestions?

Thanks a lot. Sveta

Looking for a specialist in Texas, East Tx or Dallas Houston. Will go out of state if I feel safe doing so. 25 years of being sucked dry by leaches or specialist to be no better off. Been a pin cushion and cutting board. Have kept full time job acted like I’m great when I can’t hardly stand until I can’t. SO GUESS ILL ASK WHO SPECIALIZES IN BEROLOTTI SYNDROME that doesn’t want to use me as a cash flow. Need help kinda at the end here and question a lot lately.

Hi @cherokee74, welcome to the Spine Health group. I see that you are looking for a recommendation for a specialist who treats lumbosacral transitional vertebra (Bertolotti's syndrome). @nicoletorres was also looking for someone in the Dallas area and may be able to help.

Cherokee, have you looked into Baylor University Medical Center in Dallas or other large medical system? You say that you'd be willing to travel. If so, you may wish to consider Mayo Clinic Spine Care https://www.mayoclinic.org/departments-centers/spine-care/sections/expertise-ranking/orc-20426372

Hello! Did you have any luck finding a knowledgeable doctor in or around Texas?