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Bertolotti's Sysndrom

Just wondering how many people out there are dealing with this? I have been suffering for years only to have my doctors recommend shots, drugs, etc. that don't halp much at all. I only recently had an actual name for this provided to me.


This discussion is related to 'Bertolotti's Syndrome'.
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Avatar universal
I have  this and these are great places for info Bertolotti's Syndrome Education Group (USA) on facebook and Dr Aurther Jenkins Neuro surgeon in New York Bertolotti’s syndrome is a common but often misdiagnosed congenital anomaly that causes pain in the low back and legs. The condition is the clinical presentation of back pain, sciatica, or both, but is associated with the congenital anomaly of a bone in the spine rubbing against part of the pelvis, also known as a lumbosacral transitional vertebra (LSTV).
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19944075 tn?1487091797
I have done research on Bertolotti's and per other people's posts I am going to list the surgeons people said were knowledgeable on BS.  Once you know it's BS (pelvic xray will show or else SPECT/CT test) treatment seems to be 1. fluoroscopically-guided epidural steroid injection [usually done by pain management at ortho MD center] at sacralization called "pseudoarticulation" or "fake joint" where transverse process turned bone merges with ilium 2. some people found great temporary relief using cox chiropractic treatment (drop table) technique, I'm not going that route as I think Chiro too aggressive, http://www.coxtechnic.com/physicians.aspx 3. minimally invasive or regular surgery that accomplishes "resection of the transitional vertebra" one person wrote, "Minimally invasive endoscopic reduction of the spatulated transverse process is showing 80-90% relief for over a year on followed studies now BUT A NEUROSURGEON needs to perform this for the obvious reasons, ie: NERVE INVOLVEMENT. Why are so many surgeons RELUCTANCT to put this label on it?" [this has been my experience as well RE: neurosurgeons]

surgeons recommended (I dont know these MDs)
"In the SE, Dr Hodge in Greenville SC, or Dr Silkox, with Peachtree orthopedics in Atlanta performs this procedure with >80% success rate"

"The doctor who operated on me is a neurosurgeon at UCLA in Santa Monica, CA and his name is Dr. Duncan McBride. He is extremely knowledgeable on Bertolotti's and has done many surgeries to correct the deformity"

Boston, MA--Dr. J. Byron Davidson is a Board Certified Orthopaedic Surgeon Fellowship trained in Adult Reconstructive Orthopaedic Spine Surgery

Dr. Manos at the Spine Institute of Idaho in Boise

Dr. Michael Steimetz bertolotti's syndrome

Dr Lawerance Dickenson his office is in Castro Valley CA, Pacific Brain and spine institute

I'm hoping steroid injections will help, getting my second Feb 23rd, will only consider surgery if pain continues another year it's been 4 years now unable to work
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Avatar universal
Thank-you for the info . I had terrible pain in my botox, hip, leg and back. I could not get an appt soon enough with my doctors so I went to another ortho Dr. He said I have arthritis in my hips and back gave me an injection that did help for a few days .I told him I had a right knee replacement and my left knee has $4,000 of injections. Without saying anything he karate's my injection knee causing pain. I screamed and he said, did that hurt, then karate's the plastic knee. He wants me to go to him on the 21st of Dec for a live X-ray and another shot! Christmas is coming and I would like to be able to walk ....I don't know what to do about him giving me a shot or anything else. I don't know him and I don't like him!
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Avatar universal
I have been having issues since 2010, Found out recently I have BS had a epidural today. Pressure is bad. Dr keeps trying to put me on mind messing drugs. I have refused to take them. I do take narcotics for the pain, but doesn't do the trick. Is there anything that has helped anyone?
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Avatar universal
My 13 year old daughter over here in the UK has recently been diagnosed with this awful syndrome. The doctors over here have pretty much dismissed us out of hand and referred her to Pain Management. I agree that there is very little known about this syndrome and my daughter is in constant pain. We have now found a great Chiropractor who is very confident she can help her, so fingers crossed. It surprised me how little Dr's know about this syndrome. I work for the National Health Service in the Pathology Department and even the Doctors I work with have never heard of it. They have tried spinal injections with my daughter but unfortunately did not work. At a loss of what to do next....just hoping and praying that her chiropractor can help.
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3 Comments
Any updates? Just been diagnosed with it down here in the UK too.
My 14 year old daughter has just been diagnosed today, reading this info is so upsetting as it is obviously much more serious than I thought.  she has bladder problems too and we're trying to work out if this is linked. Does anyone else experience bladder problems?
My daughter is 18 and a dancer, she too has BS and is in agony, which is only getting worse as she is in full time dance training. I've been searching the internet to find UK experts / surgeons, have you had any luck with this?
Avatar universal
I hope you did resection 1st to see if it would work. The fusion is much more involved. Let me know how it went if you had anything done for your BS. Regards, Dan
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Avatar universal
I have been diagnosed with Bertolloti Syndrome. I have done everything for 20 years now. PT, Prolotherapy, multipal steroid Injections and pain meds on a daily basis. I had 2 discemctomies over the years at the same level and had a fusion last Dec 2014 of L5-S1 as the disc had totally collapsed.Still have pain at the pseudo articulation which is hard to get the Dr's. to believe. Fortunately I work for a DC ND who is helping me get the resection surgery. Dr's did not believe that the joint moved and I kept telling them it did and would get locked up. They finally did a CT and found bilateral assimilation with degenerative changes, meaning they do indeed move. I am waiting for the ortho surgeon to get approval from insurance to do resection. I live in the Salem, Oregon area. I am only 43 and cannot tie my shoes or shave my legs without pain and my SI snap, crackle and pop all the time which I know is creating more degeneration. My plan is to get the resection and do prolotherapy on the SI joints to stabilize.
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Hi I live north of Salem and BS was something I found online by reading about transitional vertebre. I learned about BS and its symptoms online. I asked my specialists about it and none of them had heard about it let alone treated it.  There was one pain management clinic in Salem that deals with it but my insurance does not cover the costs of my being treated there.. have you found anyone  who will do the surgery for resection?
Avatar universal
chefcindy46 -- thank you very much for posting the links for BS, and LSTV.

How are you doing with finding a Dr regarding LSTV & BS? Regards, Dan
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Avatar universal
Hi, I have had BS for the last 20 plus years, (started getting the shooting pains when I was 17) and for me, the hardest part is sleeping! No position is comfortable, and I have to sleep on my side (which I hate) and I wake up with my whole body aching. I was wondering if anyone has suggestions for a good mattress that might help with sleeping without pain!
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Avatar universal
MY doctor has place me on Butrans Patches to relieve pain I was diagnose with
bs in 2012 no more harsh drugs that make your mind weak or your body exhausted and I also us a compounded cream that works I am 45 and stil spend a fair amount of my time laying on ice or heat but there are good days that I can honeslty say normal though they are short live they truly Blessing to you,Crystal
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570073 tn?1221446127
I am happy to hear the injections have helped you, however, they don't work for everyone. I have had 3 injections into my spine and 1 under fluoroscopy into the affected area. I now have a large fatty tumor in my back where the first 3 injections were done which is also compromising more nerves. I use to live in the Portland area and have found more ignorant doctors there regarding this than anywhere.

If it were my choice, I would certainly opt for the resection of the bones to relieve the nerves being pinched. So my advice to Hoff4470, opt for the resection of the vertebrae as opposed to the fusion because you don't want More nerve roots trapped. Just my humble opinion!

God bless to all and good luck with whatever treatment you choose.

Cindy
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Avatar universal
Hoff,
See my post to Carolann.  BeforE you ave surgery, check out injections with a doctor who knows this syndrome.  there may be specially placed injections that will work, without surgery.
Call Dr. Balog at Portland Pain & spine.
Best, Waguna.
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Avatar universal
Carolann,
I live in Portland Oregon and have had this syndrome for 34 years (I'm age 50). I wore a brace, did yoga for years, have had acupuncture, have seen osteopaths and chiropractors and surgeons. Was dependent on 200mg/day of Oxycodone for five years.  Nothing helped much, Including many injections from four different doctors.
Finally, Dr. Carl Balog at Portland Pain & Spine gave me a very specially placed injection between L5 and S1 and I have been almost 100% pain free for the last six months.  He knows this syndrome well and knows exactly how to treat it. You will only need an injection about every four months.
It is incredible.  Good luck.
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Avatar universal
I have been diagnosed with this and surgery has been discussed. I was wondering does anyone have experiences of how the surgery and post surgery went.

My options presented have been
1. resection of the l5/s1 transverse process
2. fusion of the l5/s1

This is probably the hardest decision I have had to make and any advice or experiences would be most helpful
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1 Comments
Just wondering if you decided to have surgery and if so, can you tell us the outcome of the surgery and what option did you choose? thanks
Avatar universal
I had many of the same issues you had, I was told that during both of my pregnancies, extra relaxin was making me unstable and causing the pain.  I was put on bed rest and the only way I could get out was in a wheelchair.  I'd been having back issues since I was 15, but was always told it was a disc issue.  I was only recently diagnosed with BS by a chiropractor.  It's much worse now than it ever has been, but I feel some hope that he is going to help me.  

In addition to the piriformis muscle stretches, look into keeping your Psoas muscle stretched as well.  Mine gets really tight and I stand crooked because of it, causing more pain.  

Good luck!!  
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Avatar universal
I have suffered with back, hip and pelvic pain most of my life. But for some reason never went to have it medically seen to, just saw PT and chiro's to deal with my sacroilliac problems and ITB's which were constantly giving me grief.

I fell pregnant with twins and became crippled with accute pelvic instability and osteitis pubis. But the obstetrician told me it was the relaxin hormones doubled from the twin pregnancy and I would be fine after the birth. That was 3 years ago, and I have been in constant pain ever since. Skip ahead to a few weeks ago, I go to my GP in a state of complete frustration and depression, I can't exercise, walk, carry my babies, struggle everyday doing housework and simple activites like getting in and out of cars, as well as travelling and its impossible to sleep as the pain keeps waking me. I kept thinking I would get better, but I never have.

X-rays confirmed I have transitional S1 vertabra, enlarge processes sacralized on the right side, articulating with the sacral ala, I have degeneration of my facet joints at L5 and L4, hip bone spurs and narrowing and sclerosis of the pubis symphysis. But really the doctor offered me very little information. My entire pelvis is weakened by biomechanical instability and degeneration. My transitional vertabra was dismissed almost as just a congentital issue, that is common, affecting 5% of the population. He certainly didn't give light to the fact that this issue may be the single cause of my pain and my instability that is causing degeneration.

Its only through internet searchers that I am piecing together that I do have Bertolotti's Syndrome, and that the reason for my pain and pelvic biomechanical issues is this.

I feel like the doctors do not understand, even my chiropractor is puzzled to why I am in so much pain. Makes me feel like its all in my head, when doctors don't acknowledge its validity. Last week, my chiro managed to manipulate me, so I could have 3 days reasonably pain free. I felt like I was cured! And that sent me into the highest of highs, but then the pain returned and I feel so depressed now. Its torture not to be able to be active with my children. And whats even more disturbing is this may only ever get worse not better. I am very interested in the link in with the piriformis muscles, because that is definitely part of my issues. It is extremely tight and painful. From readings, the muscle can also have some kind of deformity associated with Bertolotti is that right?

So where do I go now, an orthopaed or a neuro?? Will core strengthening help like the chiro suggests? Is there any answer?? The idea that this pain will be with me for the rest of my life is literally driving me into a depression. What is the best medication for the pain? I'm on ibuprofen and codeine, but neither really helps.

I think it would be easier if the medical profession was more knowledgable and helpful, but right now I feel lost.
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Avatar universal
Thanks for the response. I find people that are not in pain all the time don't really want to hear about it so I stopped venting to people here. I am from Ma and people don't know much about it hear either so what to do..apparently just suffer through it..and as you said have faith ..I was saddened to hear your in a wheelchair. I have read about others that ended up in a wheel chair and this has become my worst fear I am or should I say use to be one that never stopped running doing this doing that I have slowed down a lot and have had to not volunteer as much at my church when asked. Which really makes me feel bad. But not as bad as the pain I feel when I do it..Are you getting disability I have been thinking about applying for it, it takes awhile to get it so I thought by then I surely will be less likely to work. But on the other hand I worry this will keep me from trying to be active.Ya know like once I label myself it's all over.  I really try to pretend that it's really nothing. It use to be easier when it only bothered me when I overdid things but know its here every day so pretending isn't as effective anymore..I try to think things could be worse I guess..Ok wishing u a pain free day thanks for listening Carol
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570073 tn?1221446127
Trust me, you are not alone. I feel your pain. Going on 18 yrs without being properly dx'd. Docs on the West Coast have never heard of it, let alone try to dx it. I think I have finally convinced 2 different docs to do some research on it and with God's will, I will finally have a correct dx.

As there may not be a cure, there is certainly a surgery that can be done that just may lesson the pain. However, the longer the nerves are damaged, the less likely they will be to regenerate. The surgery will stop the progression of damage, but could be too late to do much good on the existing damage & pain.

Bartending/waitressing was my way of life. What I love more than any other job I ever had, however it was also the worst. Being on our feet all day was doing nothing but adding insult to injury. One Neuro told me 17 yrs ago, if I didn't stop and change jobs where I could sit/stand frequently, I would be in a wheelchair in 5 yrs. I did quit, and took and office job...worse still, than several other jobs after that. All of which just make me worse. Till I finally had to quit altogether 6 yrs ago. I made it 10 yrs before having to use a wheelchair. But getting the doctors in this region to believe me or even try to understand what's its like and what I deal with on a daily basis is like pulling teeth from a lion.
I wish I had something good to offer as relief, but unfortunely I have no answers. What gets me thru each day is my faith. I pray daily for God to give me the strength to get thru another day. I pray you find your strength.

Love & Blessings always,
Cindy

Leave me a note anytime ya want to talk!
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Avatar universal
I am so sick of the pain..I can't stand for long periods of time can't sit for long periods of time, quit my job as a bartender the daily pain was just to much..now I have no money and my Dr doesn't seem concerned she told me not to let the diagnosis get to me it's just a name..What does that mean I think she doesn't have a clue as to what it is since she wasn't the one to diagnose me it took me 29 years to finally have someone diagnose me. That was after all my friends thought I was a hypocondriac and would tell me you never feel good it's in your head well no it was in my back my legs my arms my feet everything hurt..But the Dr.'s never found anything until I carried on and she sent me to a specialist.so know what..diagnosed but theirs really not a cure so how am I suppose to hold down a job they don't take it well when ya call in all the time besides I feel guilty when I can't help out or do things so I do them anyways and then suffer worse for the next week. For a big part of my life I just thought everyone was in pain like this. Now I know that their are people out their that live a pain free life whats that like..Ok sorry just needed to vent..
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Avatar universal
hi... im 24 y.o. from Philippines and diagnosed with transitional vertebra today. im still searching for a specialist who can manage this. for now can you help me find more information about BS and treatment options i can have.  thanks
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Avatar universal
I also have BS and the thing that helped the most was PT. I could not believe how great I felt but it was hard keeping up on the excercises as they take some time each day and I had other health issues going on. The suffering and pain with this is horrible. Going to try and go back to my excercises and get back to where I was 3 years ago. Thank God for my Chirpractor who diagnosed it 3 years ago. He says its very common but can be debillitating for some.
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Avatar universal
Yeah, sounds like a lot of us are in the same boat here.

I've been researching options for pain management, which seems like about the best thing you can do unless you're willing to take the risk with surgery. I've been updating what's effective for me at http://www.***************.com/blog/?p=296 which is my generally non-medical blog. My two defining aspects of pain management are 1) My head needs to be able to function to get work done (i.e. limited use of muscle relaxants and little or no opiods) and 2) I want to limit use of treatments that are associated with long term organ and tissue damage (i.e., limited use of NSAIDS and acetaminophen).

Generally, I have found so far that a) the green to mute pain signals, b) ice for swelling and c) swimming to take the pressure of the spine, are the three things that work best for me.

I'm starting to looking into working with medical professionals to look into ergomonics, posture, exercises, etc., to manage pain and also to limit potential for degeneration, which seems to be a possibility for at least some people.
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Avatar universal
I have to admit...after reading everyone's testimony I am a bit relieved that I'm not the only one out there dealing with all the pain and the hassle of doctors/disability, but I am so sadened that there doesn't seem to be a cure.

I've had pain for the last 15 years and until two years ago was misdiagnosed with multiple different things.  My BS caused scoliosis on top of all the pain, numbness, swelling, etc.  I've gone through the PT, tests, ignorant doctors, medications, chiropractic care.  

I found a surgeon in '09 who actually researched BS, talked to top doctors in Europe about different treatments and stuff, and we did surgery.  My surgery was to separate the naturally fused L5-pelvic bone INSTEAD of fusing the other side...when my doc cut my bones apparent my nerves jumped off the chart.  Apprently when my bones had grown together they had pinched a bundle of nerves and it didn't show up on any of the tests we did.  The pain was gone!!  But before I could complete physical therapy I got into a car accident and found out I was pregnant.  As the pain got worse (AGAIN), my doctors and I thought it was the weight of the baby.  After my youngest daughter was born, and after some tests, we found out that my bones have (now) grown back together pinching those same nerves.  Shame on me for being healthy!

I've since moved and using my surgeon is not possible.  So I've started the whole process over with new doctors.  It's been a bundle of joy.  My new doctors are concentrating on TENS unit (doesn't work) and injections (I'm allergic to steriod injections).  I want the surgery again...this time I want more bone cut out.  I'm in the San Diego area so if anyone knows of a good surgeon down here let me know please.  Hoping to have my surgery this summer.  Want my life back.
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Avatar universal
My 17 year old son was an acitve popular youth. He played football for High School, lifted weights and within 1 year it is all over. He started with low back pain that is now crippling him. He has Bertolotti's Syndrome. We found out after 3 MRI's and 2 CT Scans, not to mention a Bone Scan and a SPECT Scan.

He has had 3 facet injections with little to no help. He is now depressed and due to his inability to be mobile he has lost most of his friends.

With much research, we have found that Bertolotti's Syndrome causes the Piriformis Muscle to go into spasm. So yes, everyone is right, surgery will not help at all. Look up Piriformis Syndrome. That will give you some answers and possibly relief. He is doing the excersises and feeling somewhat better.
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2 Comments
Hi jsmom311, do you remember where you found the info about the piriformus spasming because of BS?  I would like tonpass it onto my doctor as I am currently suffering from this and she thinks I have BS (better x rays will confirm it).
Oh gosh, when are you going back for your x rays to confirm?
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