bertolotti syndrome

Our 15 year old daughter has also been diagnosed with Bertolotti syndrome. She has been playing softball since the age of six and is currently on the high school team. She is in chronic pain. We have had x-rays and MRi's. She lives on Advil. We are conducting research as the doctors here in Fairbanks Alaska do not know a great deal. Surgery to me does not seem like a viable option. Can anyone recommend a specialist in this field hopefully on the west coast. It is very discouraging.

Our dautghter is 18 - a HS soccer player in Fairbanks. She just found out she has bertolotti syndrome and has terrible pain down her legs. We also are interested in specialists in the northwest.

Hallelujah!

I have been plagued with this syndrome for years. I have not confirmed it with my doctor yet, but I match all of the symptoms and I do have sacralization of my 5th Lumbar to an extra sacral bone. This has lead to a fracture in my L4 vertebrae and complete disc degeneration in L4-L5 disc.

I play golf and softball and have just dealt with the pain. I am 30 years old and was too stubborn to stop my activities. Does anyone know if by continually playing these sports I am running a risk of serious back issues?

im 15
i do have this syndrome
ive had over 40 x-rays
2 MRIs
2 CTs
1 bone scan
2 Steroid shots
and a fusion surgery
the only think that has remotely helped was the fusion even though i still have horrible pain

rocky mountain spine is who has helpd me

im a difficult case since i have an L6 and im so young

they've done as good as can be expected for me so far

I too have this condition. No doctor I have seen has said this was the name of it, but after reading I have found out this is what it is. It was discribed to me as Unilateral Sacralization. They found this when I was 16, I am now 30. For the past year it has been hard. I have been in so much pain, from the burning, and tingling, numbness, to my pelvic feeling as if it is going to collapse. 1 year ago I also ended up with a bulging disc and a herniated disc. I could barely get up. I did not know this is what it was called until now. After many test, XRAYS, MRI's and doctors. It has been stressful. In my case my L4 and L5 are fused to my sacrum on one side.
On monday I had an injection in my hip, it didnt help. Yesterday I went back in for injections in my lower back. I am in so much pain today. I go back on Nov 5, he wants to see if I am in pain still if so he will do a bone scan. He fears the I may have a hairline crack in between all this, which is compressing a nerve. My doctor is wonderful he will take care of this

I want people to please email, I will talk to them about this. And for the younger people please do not wait for treatment.

**edited by moderator**

I don't know much about this either but here's my story:
I've had burning pain in my outer left calf for years now during excerise. After ignoring it for the better part of 10 yrs it started to get worse so I finally decided to ask my Doctor about it. After trying some topical therapy he sent me for an EMG which showed a 15 to 20% nerve damage. This pointed to something wrong with my L5 vertebrae so they xray'd to find that my L5 is sacralized to S1 (or Bertolotti's syndrome). For the time being I'll try treating the pain with some NSAIDs and will get into better shape (ie: drop 20 lbs to get back to my high school weight) and tone up (ie: strengthen my core to help support my spine). Outside of that I don't know what else to do. Surgery is a last resort and as my pain doesn't impact my daily life all that much I'm not going to let them operate.
Good luck to all

I started having low back pain at the age of 18. I was just diagnosed with Bertolotti's Syndrome 2 years ago. I'm now 42 years old. My family doctors file is over 3 inches thick. I've had countless doctor, chiropractor, physiotherapists and specialists try to help me with pain management. I gave up the codeine eventually due to the amount I needed to be comfortable. I have 6 lumbar type vertebrae...lowest referred to as lumbarized s1. I have an s1-s2 disc space. At l4-l5 I have a mild broad based disc buldge, mild ligamentous & facet hypertrophy & mild right foraminal narrowing. At l5-ls1 I have moderate broad based disc bulge with mild ligamentous & facet hypertrophy & moderate bilateral foraminal norrowing.
The only thing that seems to help with my pain is to keep mobile. Only then is the pain somewhat tolerable. I haven't had a good nights sleep in 24 years.

Hello!
I am not so good with computors and my english isn´t the best, but I hope you get this and that you understand. I also have Bertolotti´s syndrome. I have had pain for about 15 years. Just like you I haven´t been able to sleep. This authom I was paralysed in my toes. I have been seeing all kind of doctors and nobody have ever been able to help me. When I no longer could move my toes I forced a doctor to do surgery. When i woke up after surgery I could move my toes and I had no longer pain in my leg. Now I am able to sleep a whole night and it is fantastic.!! Please answer if you get this.

Regards Katarina

I'm very happy for you Katrina. Please share with us the type of procedure they performed on you, some of your previous symptoms and the symptoms that remain.

I am 37 and have been struggling with Bertolotti's for 25 years. I am a surfer and would imagine having my back in extension while paddling is challenging for a transitional vertebrae. However I notice if I'm out of the water for a while I can get really sore ... paddling can be a relief. (Give it a try)

Sitting has always been very painful. I have nerve pain in my left butt and groin. My left hip flexor/psoas feels very involved in the problem. I have no symptoms on the right side. Stretching worsens the symptoms. I fail the straight leg test (ham string stretch with straight leg) miserably. No twisting, bending, stooping, hanging for me.

The only thing that gives relief for me is Vicodin, which comes with it's own set of problems.

I am also curious as to the procedure that was performed for Katrina. I am currently looking at surgical options after 8 years of attempts at all of the other options - physical therapy, massage therapy, pilates/yoga, accupuncture etc. My biggest problem is that I cannot sleep at night. When I lie down the pain intensifies. I just had an MRI done, and the discs don't seem to have any major problems at this point. I have seen a surgeon and he has suggested a resection of this portion of the vertebra. Unfortunately, he has never actually performed this surgery before. I have spent hours looking for research.

Anyone with any suggestions would be appreciated.

Thanks
Kathy

I was wondering how you found out about Dr. Silcox and why you reccomended him to treat one's Bertolotti's syndrome?

Dr. Diva:

I was wondering how you found out about Dr. Silcox and why you reccomended him to treat one's Bertolotti's syndrome?

Thanks,
Searcher08

Hi, I am 39 yrs old and just recently dx with Bertolotti's. It was finally found in an x-ray. i just went 3 days ago for another MRI. Still waiting on
that. I have been in severe pain since 7/06. I was on Norco for so long I became addicted. Now I take 5mg of Methadone every other day along with Ultram. These meds don't even take the bite off. I have done PT, pillates and pain injections. They helped temporarily. I have yet to find any long term solution. I would appericiate ANY recommendations. Thanks so much!

Hello! Sorry for not replying sooner. I didn´t know that my first letter went through... Now I will tell you all about my symptoms and my operation. I have had a constant pain in my left part of my pelvis, hip, thigh and calf for about 10-15 years. My pain was worse after sitting and I am a vet so I have done a lot of sitting in school. The last years in university were really hard because I wasn´t able to sleep because I had to turn around every 5 minutes. I have tried all kind of drugs, NSAID, cortisoninjections and opioids but nothing has helped. I became a little bit better after cortisoninjections but the effect lasted just a couple of weeks. I have also tried with all kind of exercise but it hasn´t helped me. I have seen many doctors and gone through x-rays, MRIs, ultrasound, EMG, bloodtest but nobody told me that I had Bertolloti´s before I was paralysed in my toes. When I got my diagnosis I read all about it. After reading a Finish study about surgical treatment of bertlotti´s syndrome I started to look for a doctor who could operate me. It wasn´t easy to find one but I manage to find a professor. He couldn´t promise that an operation would help me, but it wouldn´t make me worse. With my long pain history and my bad toes I hadn´t much to loose so we decided to do the operation. My discs are ok and because of that my doctor decided to do a resection of the transitional vertebra. If the discs aren´t ok it is better to do a posterlateral fusion. My operation took an hour!! Immediately after the operation the horrible pain in my lef leg was gone and I could move my toes. After the operation I had severe pain in the back for about three weeks. After three weeks I gave up painkillers and started with exercise in water and with big balls. I had the operation 20071120. I have now been working as a horsevet for a month and I think it is going fine. I have also started to ride my horse again and it is fantastic to be able to feel my left fot in the stirrup. Hope you will understand my bad English and please let me know if I can help you.

Regards Katarina