I’ve been dealing with this for 30 years. I asked about surgery 20 years ago and they thought I was nuts. I only found out what it was called a few days ago because I got my CT scan results report and googled everything to put it into plain English. I presented my findings to my doctor who confirmed it. She had never heard of Bertolotti’s Syndrome but had seen this defect before. I now have bone spurs and osteoarthritis in my hips, and degenerative disc disease in the next joint up (L4/L5) because I didn’t get the surgery when I asked for it. I wouldn’t have got the referral to a spinal surgeon if I hadn’t googled the terms in my CT scan results report and found the name of this condition and then was able to search that term in scientific research papers and find the surgery was actually possible. It pays to be your own advocate.
@BadRepJoanie I actually had surgery April 2nd. Dr. Michael Steinmetz and the Cleveland clinic is the absolute best! I feel the best I've felt in 12 years!
It is completely overlooked in our NHS & Gaslighting from consultants doesn't help with mental health either & these experts should know that. My related symptoms & more importantly the lack of function due to bertolotti syndrome hit the roof after a fall trauma to my sacrum 10 yrs ago. I repeadedly went back & forth misdiagnosed & told there is nothing that shows why i have these symptoms. I also have a chiari malformation type 1 so another congenital anomaly can't hurt right😂 I managed to get images taken last year after dissmissive treatment for May years but was not told of latest findings when they were received, which was the last straw. I have Bertolotti syndrome coupled with cervical lordosis & a recently discovered annular tear on l4 ALL Of which can definitely cause the upper & lower functional & chronic pain issues & now i have many spurs & disc degeneration up and down the spine. Difficulties bending, tying shoelaces, wiping bum and sitting or walking too much. They took a scan of my hips & pelvis 5 yrs ago. Bertolotti syndrome can be seen on it. Its maddening.
Senior year. Same as me, back in 03. Just finally got the diagnosis My new Dr said imaging found it back in 2018 but those old drs essentially ignored it Have the same symptoms Maggie did
I'm curious to know if Maggie's resection surgery is still successful or has the resectioned bone grown back? Some patients who had the bone cut back, the bone has regrown and then have to go back in for a fusion at that level. Typically the L5-S1 level unless they have an additional vertebrae L6-S1.
You need a CT scan to confirm. It’s much clearer and you will be able to see exactly what type (there are 9) and from that, you will able to pinpoint exactly what kind of treatment will be most effective. If you’re getting steroid injections for pain, a CT scan will show exactly where the injection should go, otherwise the injection is less likely to be effective.
@@BadRepJoanie You don't necessarily need a CT scan to confirm if you have bertolotti. You can see the pseudo-joint near your L5 and sacrum on an X-ray with a clear eye.
JFC that’s hardcore! With that kind of bilateral immobility in your L5/S1, do you still have the typical uneven hips and spinal curve? I’m 2C and suffering 30 years. Been having to use a stick to walk some days for the past year.
I had a surgery for bertolotti's syndrome and that did not help!! I know many others that still got many problems after surgery.. God for the girl in the video - but I think videos like this are misleading
Interesting to hear. From the research papers I’ve been reading from 2020 onwards, the surgery is minimally invasive and has a very high success rate. It would be interesting to find out how long those patients who have not found it successful have been suffering from Bertolotti’s and if they have secondary degenerative conditions caused by it that would not necessarily be fixed by the surgery.
It dosent necessarily get worse with age mine is L5 /s1 left side , always lift suitcase side lifting never front lifting that will put me to bed from pain
Having suffered from this for 30 years, I can absolutely say it does get worse and it eventually effects your L4/L5 (in some cases causing spondylolithesis) and your hips.
37 years with this since 19 , but i have neck stenosis last 14 years also thats worse because of migraines it gives BS can knock me out a day or so when serious pain comes in
