Bertolotti's Syndrome: Looking for a specialist

I'm 28 and just found out a few months ago that the lower back pain I have been suffering from my whole life is because I have bertolotti syndrome. I did physical therapy before finding out what was wrong. And just started the injections in my back. I'm hoping they work but if not I'm looking for a surgeon that would at least think about surgery for me and know more about what I have my current doctor has given the excuse he won't do surgery because I'm young and that I have a young child

Also I live in western Pennsylvania

Hello @courtney28, @nicoletorres, @kendrakrumpe, and @toniab. I understand that Bertolotti's Syndrome is rare and that you are all looking for places near you to get treatment. I wanted to introduce all of you so that you could share your experiences with one-another, how you are coping with your symptoms and updates on your quest for finding treatment. Should you choose to contact Mayo Clinic about an appointment, here is the link, mayocl.in/1mtmR63. I cannot speak personally about the expertise or availability of appointments regarding Bertolotti's Syndome however.

@courtney28, @nicoletorres, @kendrakrumpe, and @toniab, if you don't mind sharing, what treatments have you tried and what ways do you each cope with the pain and manage the symptoms currently?

did anyone find a Dr. specializing in Bertolotti's? please let me know

Hello! In need asap help for my daughter. She has Bertolotti Syndrome we are hoping someone in Canada is available for questions. We can also look into the states, she's to the point of surgery as everything else isn't working. Please help!

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?

Hello @nikko092, welcome to Connect. You may notice that I moved your discussion and combined it with an already existing discussion about finding specialists in bertolotti's syndrome. If you are interested in contacting Mayo Clinic Jacksonville to learn more about their providers and if there is a specialist you can contact them by 904-595-6279 8 a.m. to 5 p.m. Eastern time, Monday through Friday or using the following link, mayocl.in/1mtmR63. The operators on the appointment lines will be best equipped to answer your questions.

@nikko092, you mentioned that your current provider did not want to perform surgery, if you are comfortable sharing, did she or he give a reason for this and what options were you hoping for?

There's a really helpful Bertolotti's Syndrome Facebook group with a lot of resources. Search: Bertolotti's Syndrome (USA)

Hello @mamma1st, and welcome to Connect. Thank you for sharing some additional information with the members discussing Bertolotti's Syndrome. If you don't mind sharing, have you been diagnosed with Bertolotti's? A few of the members, @lorae in particular, asked if any other members had experience with surgeries as her daughter had progressed to that stage. Do you have an experiences with Bertolotti's treatment that you could share with the group?

My 17 yr old daughter has Bertolotti's Syndrome. She is scheduled for a one-level, double-sided fusion in 2 weeks. Prior to deciding on surgery, she tried 3 years of physical therapy as well as a nerve block and SI injections. Her transverse process is much too large for a resection so her surgeon feels as though a fusion is the only available option.

@lorae I'm not aware of any surgeons in Canada but I believe there are quite a few in Massachusetts and NYC that are familiar with treating Bertolotti's.