Bertolotti's Syndrome: Looking for a specialist

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

I have been experiencing back pain since 16 or 17 years old. I am now 25.
A chiropractor stated one leg was longer than the other and tried treatment. With no luck at the chiropractor, I moved on to the UVA Spinal Center. There, I had an MRI which showed a herniated disc at L4 and L5. I went to physical therapy which was unsuccessful in relieving any pain. I then switched my care to a different Spinal Center where they discovered I had a "pseudo joint" where my left transverse process on L5 was fused with my sacrum. However, they only treated the disc herniation with steroid injections (3 to be exact). I found myself at Andrew's Institute in Pensacola where I had more imaging, one Bertolotti's steroid injection, and 4 more steroid injections for the disc herniation. NONE of the injections were pain relieving so I was sent back to physical therapy through Andrew's Institute for 6 weeks. After more unsuccessful treatment the doctor at Andrew's decided that he could do no more and did not want to perform surgery. Here I am. Does anyone know if there is a doctor at the Mayo Clinic in Jacksonville or anyone that has had experience with Bertolotti's Syndrome?

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!

Is there a specialist in Washington State?

Hello @stonemetz and welcome to Mayo Clinic Connect. Because you are looking to connect with others to learn about possible Bertolotti's Syndrome specialists in Washington, I have moved your post into this existing discussion on locating specialists: https://connect.mayoclinic.org/discussion/wondering-if-there-are-any-doctors-that-specialize-in-bertolottis-syndrome-i/

Have you been recently diagnosed? Are you willing to travel should you not locate an in-state specialist?

My mother is struggling with terrible back pain. It is affecting every aspect of her daily life. She has had horrible back pain for over a year now and no one has been able to help her. Her last X-ray showed they think it is bertolotti syndrome. We are looking for a specialist in Michigan. If anyone has any information that would be helpful I would appreciate it.