Bertolotti's Syndrome: Looking for a specialist

I just had an mri done where they discovered I have Bertolotti's syndrome. I live in Tacoma, WA, and would like to know where (and who) the closest (best) doctors are to treat this. I am willing to travel to get to the right physician. Thanks.

@elizabeth9 Hello Elizabeth and welcome to Connect! I am a Mayo spine surgery patient for cervical stenosis. In doing a quick search about Berlotti's syndrome (which is an abnormal formation of vertebrae that join the lumbar spine and pelvis), I came up with this article describing the condition and treatment.

I wanted to see the names of specialists who would specialize in this condition, so I scanned down to look at the literature that is credited at the end, and I saw a name I recognized... my neurosurgeon at Mayo in Rochester, Dr. Jeremy Fogelson. I looked up his literature on surgical treatment of Berlotti's and both he and Laura Waksdahl (who was my surgical nurse) are authors.

Operative Treatment of Bertolotti Syndrome: Resection Versus Fusion
Anthony L Mikula 1 , Nikita Lakomkin 2 , Ryan C Ransom 2 , Patrick M Flanigan 2 , Laura A Waksdahl 2 , Zach Pennington 2 , Manish S Sharma 3 , Benjamin D Elder 2 , Jeremy L Fogelson 2

Dr. Fogelson is one of Mayo's best surgeons and is a spine deformity expert who trained in neurosurgery at Mayo, also did an orthopedic spine deformity fellowship, and teaches in the Mayo neurosurgery program. He is a compassionate doctor as well as an excellent surgeon. I highly recommend him.

If you wanted to seek care at Mayo, you may use this link to request an appointment.
http://mayocl.in/1mtmR63

Here is a video where Dr. Fogelson is speaking so you can "meet" him.

May I answer any questions for you about my care from Dr. Fogelson at Mayo Clinic?

I recently was having some hip/back pain (issues). After a bit of "sleuthing" and some tests, I realized that this might be Bertolotti's coming to "haunt" me. I asked my spine NP if this is what it was (and my ortho pointed out the anomalies) and she agreed. Generally, this doesn't create "pain" in that area. However, I noticed it moves more and the research suggests that it can create havoc elsewhere in the spine. (Tug of war: Is this spine or hip? Ortho or Spine?) Here I am, at Mayo, trying to figure it out. I am really interested in hearing about non-surgical Management.
I am an exercise physiologist by training and movement is important. I have a feeling I will need to relearn how to walk.

Hello, my 34-year-old daughter was just diagnosed with Bertolottis Syndrome. She has a 20 month old and is living with terrible back pain. She would like to get pregnant again but is terrified due to the pain.. She she has seen one specialist and he is suggesting surgery, which she’d like to avoid. She is desperate to find a doctor who can offer her relief.
She lives in Boston area - does anyone know of a good specialist in or around the Boston area? Or has anyone living with this found relief through either physical therapy, acupuncture, etc. any recommendations would be appreciated it.

@annmarieshrader I was wondering if you had an update to share in your spine care. Did you see a specialist at Mayo for a recommendation?

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.

Just stumbled upon this and wanted to ask who the doctor was at Andrews that you saw? I was given a name of a doctor there named Dr. Tan and was hoping he would have some experience with BS. I am currently seeing an neurosurgeon who dismisses any mention of BS despite my MRI and CT scans and report, and symptoms pointing to all of the obvious signs of it (not to mention all of the extensive, legit research I have done).

@kimia I just wanted to say welcome to Connect. Are you considering an opinion with another surgeon experienced with Berlotti Syndrome? I am a Mayo cervical surgery patient. My surgeon authored some literature about Berlotti which you can see in this discussion if you go back to the Feb 8, 2023 post.

Jennifer