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 took 3 years for me to find out I have this. 5 doctors and finally got my answer! Went with a SI joint fusion for now, don’t really want my whole back opened up.
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.
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
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'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.
Resection-only is usually only successful if it’s caught at levels 1 or 2 & no other degeneration has been done. Unfortunately, most of us need a full fusion of L5-S1. In my case, my right sacroiliac joint, as well.
I'm having the resection surgery next month. I chose to try the resection first and try to maintain my mobility if it fails then fusion is the next option. But once fused you can't go back.
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.
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
I've been going for 14 years with this. The mental health aspect is of equal devastation as the physical. Don't give up folks. I'm still not better.
I too am dealing with this 6 years, don't give up either we need you also ❤
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!
24 years for me and just got the diagnosis. Drs who really listen are incredible people
It took 3 years for me to find out I have this. 5 doctors and finally got my answer! Went with a SI joint fusion for now, don’t really want my whole back opened up.
Saw my xray and it clearly looks like bertolotti. It definitely needs more attention.
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.
@@BadRepJoaniect or mri?
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
Sadly, I am also suffering from this disease. Bertolotti syndrome type 2b.
For how long and how is it for you? I have also boarded the same boat a month ago
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'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.
“Can my Bertolotti’s bone grow back after it’s been ressected?” #Bertolottis #bertolottissyndrome
I was actually told the best way to deal with it is to not cut out the bone, but to strengthen both sides equally.
I had unsuccessful resection
Resection-only is usually only successful if it’s caught at levels 1 or 2 & no other degeneration has been done. Unfortunately, most of us need a full fusion of L5-S1. In my case, my right sacroiliac joint, as well.
I had unsuccessful resection
I'm having the resection surgery next month. I chose to try the resection first and try to maintain my mobility if it fails then fusion is the next option. But once fused you can't go back.
My doctors see mine but they claim it doesn’t cause my pain, but I been suffering from this since I’ve been young.
Please advocate for yourself and get a second opinion, it's only recently that studies have proven the pain and doctors are finding new treatments
I diagnosed with it yesterday 😢
Hi bro. How is it going?
How's it going for you, have you started any treatments for it yet?
I use a saddle seat - I tolerate it better and it sometimes realigns
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.
Yup
The Asian doctor I saw kept dismissing my pain as just "muscle pain"
Even though I was telling her it feels like it's in the bone!!!
What is a VSI Syndrome
Bertolitti Syndrome gang
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.
Hey, what type of bertolotti do you have? and what surgical procedure was perform? fusion or resection?. It's very important to know what type.
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