Bertolotti's Sysndrom

[humphs60]

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'.

[Waguna]

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.

[Hoff4470]

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

[nathan51678]

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

[313alison]

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!!  

[Missmel73]

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.

[carolann61665]

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

[chefcindy46]

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!