- that's how I got diagnosed with bertlotti's 3 yrs ago via xray live with constant daily pain use fentanyl lidocaine patches 800mg gsbapentin lot's of time either laying on couch or in bed.
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Same here 2 years ago diagnosed, use fentanyl, lidocaine patches, 800 mg gabapentin, and have injections in L4L5 area when pain out of control, ( helps for awhile sometimes) most doctors, Neuro, ortho, pain mgmt Dr never heard of this so not ready to trust anybody to touch me with a knife right now. The most difficult part is keeping your spirits up because the horrible pain is mentally, physically,and emotionally draining.
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What types of exercises do as part of your workouts? Please share as I too have been suffering from BS for 2 1/2 yrs.
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I have this same condition. I see an orthopedic specialist to get help with the pain.
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Ok, my daughter, 28, had surgery for Bertolotti syndrome in late April at Johns Hopkins.
She has had 2 scoliosis surgeries in the past. The first, at Fairfax Hospital, (by a surgeon who is no longer there,) 11 years ago was all screws, no loops,done between Junior and Senior HS years. The second, to correct what we thought was one screw in her spinal canal, but what turned out to be 3 screws in the spinal canal and many failed fusions between the vertebrae. The second surgery was considerably more than she was expecting, scraped and replaced the fusion material and re-placed the screws, was successful. That was junior year of college. She had several pain free years.
Then, last year, playing touch football, she was hit and injured. She had Constant and increasing pain. She assumed it was the same issue. After trying several local doctors, we went back to the surgeon at Johns Hopkins who did her 2nd successful scoliosis surgery. He diagnosed Bertilotti's Syndrome and, to make a long story short, she had the surgery in late April.
It appears that surgery for Bertilotti's syndrome can be anywhere from minimal to pretty major. Hers was pretty major partly because the butterfly wing flanges off of her transverse processes were so big that they may have fused with her sacrum (or it may have been busted apart when she was hit.)
And partly because she pressed the doctor to make sure that she never has to have back surgery again. he checked the other side and did it too. Which means they needed to cut back muscles. It took over two months of recovery before she began to believe that it may have worked. She was out of work for 2 months. It did, however, work. She is now mostly pain free
Her surgery team at Hopkins is the pediatric team. I don't know if they will take on other adults. But if they will, her doctor and his team has my (and her) eternal gratitude. His name is Dr. Sponseller.
She has had 2 scoliosis surgeries in the past. The first, at Fairfax Hospital, (by a surgeon who is no longer there,) 11 years ago was all screws, no loops,done between Junior and Senior HS years. The second, to correct what we thought was one screw in her spinal canal, but what turned out to be 3 screws in the spinal canal and many failed fusions between the vertebrae. The second surgery was considerably more than she was expecting, scraped and replaced the fusion material and re-placed the screws, was successful. That was junior year of college. She had several pain free years.
Then, last year, playing touch football, she was hit and injured. She had Constant and increasing pain. She assumed it was the same issue. After trying several local doctors, we went back to the surgeon at Johns Hopkins who did her 2nd successful scoliosis surgery. He diagnosed Bertilotti's Syndrome and, to make a long story short, she had the surgery in late April.
It appears that surgery for Bertilotti's syndrome can be anywhere from minimal to pretty major. Hers was pretty major partly because the butterfly wing flanges off of her transverse processes were so big that they may have fused with her sacrum (or it may have been busted apart when she was hit.)
And partly because she pressed the doctor to make sure that she never has to have back surgery again. he checked the other side and did it too. Which means they needed to cut back muscles. It took over two months of recovery before she began to believe that it may have worked. She was out of work for 2 months. It did, however, work. She is now mostly pain free
Her surgery team at Hopkins is the pediatric team. I don't know if they will take on other adults. But if they will, her doctor and his team has my (and her) eternal gratitude. His name is Dr. Sponseller.
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My daughter was diagnosed at 15 after 1.5 yrs of investigations and had surgery to remove the extra bone. She is now 18 and has had chronic pain again for 15 months and we have found that the extra bone she had surgically removed has totally regrown. We are now trying to research what treatment we can try next.
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Have you had Radio Frequency Ablation or Rhizotomy where the nerve endings are burnt? I am curious to know my daughter had resection surgery at 15 and is now 18 but the bone has regrown and she has chronic pain back again. We are considering trying the nerve burning and wondering if anyone has had success with this?
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My 12 year old who is a former competitive gymnast has recently been diagnosed with this and it is very very difficult to see her now with so many limitations since she has such an active past. She also lives on Motrin now. Have you found any relief for your daughter? Can she continue to be active?
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You have given me hope for my 12 y.o daughter with a recent diagnosis of BS.
Thank you!
Thank you!
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They do remove the bone again. Hopefully more aggressively.
Having a 28 year old and dealing with the pain long term....
Surgery was the pain med free solution.
Having a 28 year old and dealing with the pain long term....
Surgery was the pain med free solution.
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I received my Bertolotti's Syndrome diagnosis from a neuro surgeon. I think a neuro surgeon is where you should start. Be prepared for x-rays and multiple MRIs.
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