bertolotti syndrome

Hi everyone. It sounds like I’ve had a similar experience to a lot of you. I’m 30 years old and have suffered with chronic lower back pain for 8 years. The pain is really difficult to describe - like an intense gripping, aching pain – usually around my SI joint, pelvis and lumbar spine, but I also sometimes get gripping pain into my abdominals and higher up (thoracic region and bottom of my ribs). Over the years I’ve seen several different physios, osteopaths, chiropractors, rheumatologists and orthopaedic surgeons but no-one was ever able to relieve my pain or suggest what was causing it. I was given a diagnosis of “non-specific back pain”. At the same time I was told that I had a partial transitional vertebra (partially sacralised L5) but that this was quite common and wouldn’t explain the pain so I didn’t think any more about it. Eventually, 3 years ago after yet more unsuccessful physio I was referred to a DBC (documentation-based care) back and neck clinic in Harpenden (England). I was really sceptical but was prepared to try anything. The clinic used specific machines (they look a bit like normal weight machines) that make you use very specific muscles in your back when you exercise. After a 12 week programme (2 times per week) I felt a lot better and was able to get back to normal activities including football and tennis which I had given up due to the pain. Unfortunately I felt so much better that I then decided I would try skiing and ended up with a dislocated knee-cap! After a knee op, several complications and a long period of time without being able to exercise my pain returned. I planned to return to the DBC clinic but found that it had closed – not making enough money apparently, because not many of the UK private insurers will fund it and it’s not available on the NHS. Since then my back has again got progressively worse, although I did find an osteopath who could give me some very brief relief by manipulating my sacrum (he said that my sacrum was stuck although I suspect that this could be the transitional vertebra giving the impression that the area is stuck). More recently the pain has become unbearable again. In the last 2 months I have seen a really good pain specialist who suggested that the transitional vertebra could be the cause of my problems (Bertolotti's Syndrome). I am due to go back and see him again in a couple of weeks for either diagnostic injections (which may identify the source of the pain) or possibly to get a referral to the National Orthopaedic Hospital to see whether surgery could help. From what I have read, a resection appeals more than a fusion as MRIs have shown that my discs are in surprisingly good shape. Anyway, hope my story is of interest to some of you. It’s really good to find a sight where everyone actually seems well informed – most back pain sites I have stumbled onto seem full of crazy people trying to persuade you that sitting cross-legged humming can relieve all of your pain!! Will let you know how I get on with the pain specialist in a few weeks if anyone’s interested.

Simon

Dear KATARINA, your story was very interesting, I have the same problem with my lumbar, and spine muscules, and i am looking for the doctor who can solve my problem....what country you are from?I have some questions to you about operation......

Hello! I am from Sweden. If you would like to know more about my operation you can write me an email and I will try to help you all. I still think the operation has given me my life back!

Katarina
v9katjoh@hotmail.com

Hi Everyone-

It's somewhat comforting to know there are other people out there that understand what I go through every day. I have had this since I was 17. I am now 30. It has gotten progressively worse over the last 5 years. I have tried everything under the sun with no luck. I actually find I get the most relief from doing low impact cardio regularly (elliptical + a recumbant bike) Walking and sitting for too long make it worse.

To those of you who do yoga, do you find it works? I have been doing Pilates and I am actually feeling worse. I am wondering if I should try Yoga. Also, for anyone who has tried Cortizone injections, how has that worked for you?

Thanks for any input....I am feeling really bad these days and just to feel normal again, as we all do.

Thanks,
Sabrina

Hello everyone,
I just found this forum, and even tho I am saddened by all those that suffer from this, I am quite happy to know there is a place where one can get some insight into what is happening to them.

My story is this: I am 49, and suffered leg pain pretty much all my life. There was never anything found to account for the pain, so I just went on with life. As I got old enough to work, the leg pain got worse. It was SO painful and NOTHING relieved the pain. Soaking in a HOT tub helped as long as I was in the water, but once out, the pain was back.
In 96, I had an "on the job" injury. It was called a Sacral Strain then, and was told it would "heal". It didn't, it just got worse. I started getting really bad muscle spasms, had sciatic pain down my R. leg, numbness/tingling/pain in my R. leg and sharp, burning pain over my SI joint. I seen doctor after doctor, had MRI's and X-rays, and of them stating "basically" normal spine. It was diagnosed as many things, yet never any thing that would account for the pain, leg weakness/numbness, etc. So I went thru PT, Chiropractic treatments, spinal injections, etc. and that only gave me short term relieve, barely a week of help. I was considered "stationary" and put on conservative treatments, which was one pill after another, anti-inflammatories, muscle relaxers, pain meds....etc, all of which offered no relief. I tried to ignore the pain, continued to work, stay as active as I could, but the pain just got increasingly worse. Finally in 06 after not being able to work a 4 hr shift without feeling like my back was going to snap in two, I had to get some help. I had moved from the area where I had been treated for the past 10 yrs, so thought I might find a better qualified doctor here. WRONG!!! the first place I went to was a Chiropractor, one who offered a fix all for all the things I had been dx with. I took with me an x-ray from 04. He took one look at it and said, "here's your problem, you have Spina Bifida Occulta"(SBO). I of course, had never heard of this let alone been told I had it. So I went home and started my internet research. What I found was alarming at best. It said that SBO was a common birth defect. The "hidden" form of Spina Bifida and considered "an incidental finding" and of "no consequence". I started requesting ALL of my medical records from 96 to present. It was actually on a couple of the x-ray reports, yet the doctors failed to inform me. So I went to one doctor and he told me to NEVER mention my defect in his office again. I found another and yet another, until I have the one I am working with now...not the sharpest tool in the shed, but willing to explore all options.
Anyway, let me try to stay on track here...when I found that SBO was considered an incidental finding, I knew in my heart of hearts, it had to be the reason for my LBP and leg problems. Both my legs were crooked when I was born and my R is shorter then my L. I had all the signs of SBO, yet was being told because I was still continent of bladder/bowel, there was NO way it was the SBO or the nerves to the B/B would be involved. The doctors continued to tell me I didn't have nerve involvement. So after a recent EMG/NCS, neuropathy was found in the L4-L5 and my R. leg. The doctor doing that test suggested I be tested for Diabetes, as it caused this type of neuropathy. When that test was negative, my doctor was at a loss as to what could be the cause. I continued to tell him it was the SBO, but he refused to listen to me. So I got out my records and started more research....this time searching "transitional vertebrae (TV)"(which is what my film reports state, transitional type vertebrae with lumbarization of S1 with SBO or TV with sacralization of L5, depending on which one you read). That is how I found out about Bertolotti Syndrome. I took that info to my doctor and said, ok, if it isn't the SBO, how about the TV and this? He wasn't quite convinced, even tho I showed him the film reports (all of which he has copies) and so he asked one of the top Neuros here and he hadn't heard of it either and suggested I go to pain management. So my doc has now ordered a CT scan to "confirm" the TV.

OK, so here's the kicker!! Both are congential birth defects involving the incomplete closure of the spinous process. Yet one (SBO) is considered "an incidental finding" and of "no consequence" with no nerve involvement or pain indicators and the other (Bertolotti) IS of consequence and causes pain, nerve involvement and degenerative disc disease to the discs directly ABOVE the defect (all of which I now have).

During my research on Bertolotti's, I found that if they RESECT the TV, there is a 90% success rate at curing the pain and solving the sciatic pain.
I am all for doing the surgery, if I could find a doctor qualified to perform it. I am currently in a wheelchair 50% of the time. I can not walk long distances as it increases the pain and causes my right leg to go numb on me. I don't sleep well at night, as lying down only increases the pain and numbness. I sleep much better in a recliner, where the back is not straight.

Sorry this has turned into a mini novel, but I just wanted to share my experiences, my knowledge and hope that it helps some of you. I do know that the more you "stretch" the back, the worse it will hurt. Any trama to the back will also worsen your symptoms.

If anyone would like to contact me directly, feel free to email me @
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Warm Regards,
Cindy

Hello All, i have been diagonosed with Bertolotti Syndrome for 8 years and have had numerous treatments including hydo, physio, injections and fusion surgery. I would NOT recommend fusion surgery to other sufferers unless you were very sure it was your last hope! I was given a reasonable odds for success but it did fail and has caused me further pain at my L3 spinal process. I am desperate to find a definative cure for my problem as it has totally changed my life! Good luck to everyone who is looking for the same.

I was just diagnosed as having bertolotti's syndrome through an independant med exam. On top of constant pain my left leg will quit on me completely and unexpectedly (has dropped me down stairs several times) Was injured at work and have had three injections thus far. They didn't do me any good at all, quite the oposite I hurt progressively worse with each injection. Independant dr. states they could put the injections anywhere they want and not get a bit of success if it isn't the right injections in the targeted area. Wish I could be more specific but ind. dr. was pretty technical and seemed to takefor granted that everyone should go to med school if they want to talk to doctors. Will see my regular doctor in a couple of weeks and hopefully get some answers I understand then.

Can bertolloti cause severe neck/shoulder pain???

Hi everyone. I am excited and worried at the same time. Excited because after 6 or more years of pain I am now getting to the root of the problem. Why did I wait to get x-rays until now? I was a dance major in college with I started having low back pain. I tired a bit of physical therapy but the pain would always come back. Massage always felt amazing but didn't fix it either, (My poor husband would always give me low back massages but got frustrated because he didn't know what the problem was). Having babies made the pain so much worse. Lifting heavy babies and things, yikes! Vacuuming, leaning over for long, sitting on hard surfaces, or too soft. Dancing was impossible when pregnant. Now I suffer some days, especially if I lifted kids a lot that day. My sacrum seems hypermobile and if I sit on a hard surface or lay on a hard surface( the floor or hard matrice) back sacrum slides in. Standing up after having pressure on it causes a lot of pain. Sometimes stabbing pain that makes me feel like my leg gives out. I have pretty centralized pain in my left sacroilliac joint which radiates down my left leg almost half way down the outside of my lower leg. The pain used to be centralized in the posterior iliac spine but has gotten worse since pregnancy. I feel like the joints stayed hypermobile since pregnancy and never fused again.
I finally went to see a back doctor since I felt like we had the money to do it and the pain was bad enough. I knew from a college dance trainer that one of my legs might be longer than the other and that he needed to do joint manipulation to help my back motion correctly. I also have pronation problems and seem to hold my neck forward at times, ( my neck is very long). My mother has one leg longer than the other and my sister has scoliosis.
So the doctor tried a few test and asked me to go get an x-ray, mean while take some Alieve to see if that would stop the pain. It helped a great deal. The x-ray results were that I have 5 lumbar bodies. L-5 transitional with fusion of the left transverse process and left sacral ala. There is subchondral sclerosis at both the iliac and sacral sidea of the left sacroiliac joint, which may be related to the transitional L-5 and variable stress on the sacroiliac joints. Prominent stool burden noted. Phelboliths are also noted in the pelvis.
My doctor also noted I have a 1/2 to 1/4 longer right leg or shorter left leg. He tried joint manipulation to help lengthen it but that didn't work. So he gave me a small lift in my left shoe that we will gradual increase to the 1/4 inch.
I just was excited to connect with others hoping someone else was out there just like me that has had relief.
Thanks for reading and I would appreciate if you have any resources for me to study :-).

Simon- I hope this finds you- I do not know if this helps or not but I did not know I have this and started taking baclofen- it relaxes muscles- I kept upping my dose- - of course I changed my life style b/c of pain but I did not feel any-
After being in constant pain over 1 1/2 yrs this finally showed up- the neuro asked if I should talok to someone - hello I am young pretty and have three kids and I am in constant pain and everyone kinda rolls there eyes at me- my husband asked if I liked the attention- wtf- I was always the hot chick and now I am the crippled chick who would want that

Suzanne

even i have been diagnosed with Bertolotti's Syndrome and my doc has suggested me to do back extension exercises.

After more than 10 years in pain, one CT scan, 1 MRI, dozens of X-Rays, several misdiagnoses, 2 severe episodes that left me paralyzed: one for a month, the other kept me from walking by myself down the aisle on my wedding day, on August 08 I was finally diagnosed with "Bertolotti's". This left me with L-5 and L-4 herniated, and and the sciatic nerve damaged.

It was a spinal surgeon who saw it on X-rays, clearly as light. He recommended surgery for fusion of the sacral bone, and to put titanium screws on the herniated discs. Plan B: he recommended daily 20 minute stationary bike running and abdominal exercises (specified by him), and weight loss.

The bicycle exercise has been the best medicine I ever received!

The problem is that losing weight has been an issue because 20 minutes daily does not help that much to lose weight. That's my main issue because I can not lose more than 6 to 7 pounds, and I need to lose 15 pounds.

I decided not to get surgery, instead I am currently visiting an "old fashion" chiropractor who is well informed about the condition; also recommended exercise and weekly adjusting of the column. He didn't recommend surgery ( although I decided not to previously).

Aside for the weight loss, I think this combination of treatment has been the best so far for the pain!

Let me know if any of you have an opinion or recommendation for the weight loss.

After my diagnosis of Bertolotti's Syndrome, I tried injections and physical therapy. Neither helped. I actually found that the pt increased the pain. Through the years, I have found that making life-style changes have been the most helpful. Basically, I avoid any tilting of the pelvis. I sit on firm, level chairs. I sleep on a rock-hard mattress. (I only sleep on my side. I have found laying flat on my back or stomach increases the pain.) I avoid excessive walking and avoid walking up hills. I stumbled upon a dietary supplement that has helped tremendously: Glucosamine Chondroitin. One doctor gave me a "belt" to wear around my lower back and that does seem to help.

I found out about this condition one month ago. Doctors in my country don t know much about it as well. I have great trouble to sleep at night and recently I have had a surgery in my L4 L5 disc. Unfortunately I found out after the surgery was done, I keep having aches and also don t know what are the options available.
Please, any sugestions are welcome.

Hi everyone i have been following all posts on bertolotti's since i was diagnosed in 2008, my condition worsened after having kids, i find stairs a no-no and definately increase the fatigue aching pains, you have to limit your daily activites to a minimum, being a busy mum this is very hard and frustrating if your a clean freak like me! I wanted to give you all an update on coping with the pain. None of the meds work, stabbing pain relief you can get from using a spray called RADION B, I use 2 bottles a week although recently i have been using a recipe from James Wong's book Grow you own drugs which is Juniper Berries and sunflower oil, it did not give me immediate relief from stabbing pain straight away but seem to work a lot longer prob due to the oil being on back for a long period before absorbtion. Lying flat definately causes more pain if you are laying on your back put a pillow under the backs of your legs if your on your front place a pillow under your hips.. Physiotherapy does not work, seems to irritate condition, as does walking, carrying shopping bags is a big NO this will put you on your back for days, use internet for all your shopping needs, yoga definately does help but if like me you could not physically get to a gym, then get yourself a wii board and do the yoga at home, rule of the thumb if it hurts don't go there gently does it, back massagers do not help bertolotti sufferers but increase pain. I've had cortizone injections which left me in alot of pain for a nearly a month afterwards with no relief of the pain at all, having my thrid set in a couple of days with an epidural docs wanted to give me a fusion however i was'nt keen as i saw this as losing more mobility docs have finally settle on shaving the bone! this i feel might work so will let you all know, also if you are in the uk you will have major problems in getting any kind of disabilty help as a birth defect is not recognised by the jobcentre, i've worked all my life and when i needed help i got turned down and now have to go through tribunal etc, they like to send you on their back to work schemes when you cannot physically do it! Also avoid public transport at all costs i have to take my kids to school on a bus the vibration of the bus hurts so bad, and increases pain and causes aggravation have been using a crutch now as i feel so heavy I weigh 7 stone which helps if you are standing in queue's! Does anybody else suffer with clicking hips or knee's? I will let you know how the operation works out, good luck all