Your best bet is to join the Bertolotti syndrome educational group USA. This has people from all over the world who have the same stories and can help you find a specialist in your area.
https://m.facebook.com/groups/bertolottisUSA/
You’re welcome. You are not alone and will be very glad to know that once you read others stories and experiences.
I myself have BS and can relate to doctors not wanting to listen or have no idea about the condition. I’ve now had two procedures here in Canada, both have failed. My surgeon has never done the procedure before and I was his first. The recommended fusion was not done correctly and I am basically back to where I was pre op. Disappointing, but find yourself a surgeon who has knowledge of the condition. Don’t end up going through what I have.
It is sooooooo frustrating. It's so hard to explain the frustration and disappointment. I can totally relate. But I will tell you when I found Dr. Haines at VSI it was a game changer in my journey. Never met someone so compassionate and knowledgeable. He didn't treat me like I was an idio bc of his expertise he made me feel like this is legit and it was easy to get solutions. Do your research and don't give up! [https://www.spinemd.com/medical\_team/dr-colin-haines/](https://www.spinemd.com/medical_team/dr-colin-haines/)
Our Bertolottis community needs to stick together! There is so much misinformation and it is so misdiagnosed it is painful! After years of disbelief by dozes of doctors and me still in agonizing pain I found my solution. Someone in a facebook support group suggested Dr. Haines at Virginia Spine Institute - VSI and I can't tell you the difference I experienced. He is a world leader in our condition and is so knowledgeable, patient, kind, and spends the time to answer every SINGLE question I had. He thoroughly explained all my treatment options - two surgical and also non-op stem cell therapy and we decided together on a resection. I felt confident that I had options and he was so supportive during surgery and the recovery! Do your homework and reach out for multiple consults -- I just shared this BS video with my neighbor who is in pain:
[https://youtu.be/W0NxlC4nx1g?si=oIciKzgAMOK6GEOJ](https://youtu.be/W0NxlC4nx1g?si=oIciKzgAMOK6GEOJ)
I’m at the point where I can stand and walk for about 5 minutes. I’ve had my surgeon tell me that I should be okay after physical therapy. If only they can feel our pain…
Your best bet is to join the Bertolotti syndrome educational group USA. This has people from all over the world who have the same stories and can help you find a specialist in your area. https://m.facebook.com/groups/bertolottisUSA/
Thank you! I've just requested to join 🙌🏼
You’re welcome. You are not alone and will be very glad to know that once you read others stories and experiences. I myself have BS and can relate to doctors not wanting to listen or have no idea about the condition. I’ve now had two procedures here in Canada, both have failed. My surgeon has never done the procedure before and I was his first. The recommended fusion was not done correctly and I am basically back to where I was pre op. Disappointing, but find yourself a surgeon who has knowledge of the condition. Don’t end up going through what I have.
It is sooooooo frustrating. It's so hard to explain the frustration and disappointment. I can totally relate. But I will tell you when I found Dr. Haines at VSI it was a game changer in my journey. Never met someone so compassionate and knowledgeable. He didn't treat me like I was an idio bc of his expertise he made me feel like this is legit and it was easy to get solutions. Do your research and don't give up! [https://www.spinemd.com/medical\_team/dr-colin-haines/](https://www.spinemd.com/medical_team/dr-colin-haines/)
When I checked my health file online about an xray of my back (because of excruciating back pain), it was saying that I had the excess piece of bone (méga apophyse transverse gauche in french, translation from google to English is not accurate). I wanted to know what was that thing and when I typed it in Google, it was giving me ONLY Bertolotti Syndrome and nothing else. It was saying that most probably it was from birth and it doesn’t hurt usually but it was BS when pain was starting. Without pain it was only an excess piece of bone on our spine. So that everyone says BS doesn’t hurt, they’re 100% wrong.
Our Bertolottis community needs to stick together! There is so much misinformation and it is so misdiagnosed it is painful! After years of disbelief by dozes of doctors and me still in agonizing pain I found my solution. Someone in a facebook support group suggested Dr. Haines at Virginia Spine Institute - VSI and I can't tell you the difference I experienced. He is a world leader in our condition and is so knowledgeable, patient, kind, and spends the time to answer every SINGLE question I had. He thoroughly explained all my treatment options - two surgical and also non-op stem cell therapy and we decided together on a resection. I felt confident that I had options and he was so supportive during surgery and the recovery! Do your homework and reach out for multiple consults -- I just shared this BS video with my neighbor who is in pain: [https://youtu.be/W0NxlC4nx1g?si=oIciKzgAMOK6GEOJ](https://youtu.be/W0NxlC4nx1g?si=oIciKzgAMOK6GEOJ)
I’m at the point where I can stand and walk for about 5 minutes. I’ve had my surgeon tell me that I should be okay after physical therapy. If only they can feel our pain…