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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
spell check...Bertolotti's syndrome
Avatar universal
I have also been diagnosed with Bertolotti's syndrome.  I have had epidural steroid injections twice which helped for about 2 months each time.  After MUCH persuasion I went to a chiropractor. (I am an orthopedic nurse)  I had immediate relief but still feel as though it will return as soon as I stop going.  It is MUCH MUCH better and that is what counts.  I did not feel pain until I was 53 Y/O and I guess that I should be thankful for that.  I would not consider surgery at this time.  
Avatar universal
Hi,

How are you?
Bertolotti syndrome is a type of lumbago. Very little is known about this syndrome. There is no specific treatment of this condition but it is the cause of low back pain in quite many people.
http://findarticles.com/p/articles/mi_qa3767/is_200609/ai_n16756169
This link may be helpful to you.
570073 tn?1221449727
Recent research lead me to Bertolotti's Syndrome. I have a few MRI/X-ray reports that state I have a transitional vertebrae (TV) and after years of suffering LBP and NEVER getting a proper dx, I changed my research venue. In 06, I found out I have Spina Bifida Occulta (SBO), which is a birth defect that involves the development of the spinous processes of the spine. It is the incomplete closure of the bones covering the spinal cord. But everything you read about it states it does not cause problems or nerve involvement. I have tried telling my doctors that it is reason for my nerve damage/LBP, yet they keep telling me it isn't.
That is when I did my research on TV instead of SBO and found some very interesting stuff regarding the Bertolotti's Syndrome. First of all, it is basically the SAME defect as SBO. Both are Congenital birth defects that involve the incomplete closure of the bones covering the spinal cord. With SBO, it states it causes NO pain, NO nerve involvement and can not be fixed. With TV (Bertolotti's Syndrome), it DOES cause pain, DOES cause nerve involvement and CAN be fixed (I will include links that I found).
Since little is known about this defect, MOST doctors have never heard of it (as is the case with me, not a single doctor in my state has heard of it). When I found the info on TV, I took it to my doctor and showed him all the reports that state I have it and told him I FINALLY have my dx. Since he has never heard of it, he contacted a Top Neuro here and he too admitted he never heard of it either and suggested I be sent to pain management. I told my doctor that it didn't surprise me that he nor the other doc had ever heard of it (my doctor had never heard of Spina Bifida Occulta either), but just because they never heard of it, doesn't mean it doesn't exist. So my doctor has ordered me a CT Scan (scheduled for 9/18) to CONFIRM the TV dx.
So if your doctors have never heard of it or doesn't believe it possible to be the cause of your pain or that it can NOT be fixed, do as I have done and PRINT out the abstracts that you will find in the links below and take them to your doctor.

Hope this is helpful to you all and you can get the much needed help from the pain you suffer. I know I am praying for relief and finally after 13 yrs of suffering, a diagnoses that confirms what I have been saying all along.

Good luck and God Bless you,
Cindy

Copy & paste the following links into your browser address bar: The last one is a list of different studies done on the subject.

http://www.medscape.com/medline/abstract/8457417

http://search.medscape.com/medline-search?newSearch=1&queryText=Bertolotti+Syndrome

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&DbFrom=pubmed&Cmd=Link&LinkName=pubmed_pubmed&LinkReadableName=Related%20Articles&IdsFromResult=2533403&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&log$=relatedarticles&logdbfrom=pubmed

Avatar universal
Thanks Cindy, I will take a look at the links. It gets so frustrating dealing with the pain and stiffness that is getting progressively worse as I get older. Now my doctor wants to fuse a few vertabrae to eliminate the pain. I had to give up playing racquetball back in 2000 since it cused too much pain and now I can't play golf without serious discomfort or absolute pain! I have always been active and am looking forward to a retirement someday where my wife and I can play golf and maybe live on a course. This condition may cause me to revise our plans...
570073 tn?1221449727
I hope you have had a chance to read the abstracts and hope they have given you some hope in getting your problems solved. I think the hardest part is going to be finding a doctor that knows about it and has performed the surgery.

Sorry to hear you had to give up racquetball and golf. And I wish I could tell you that it will get better, but unfortunatly it is only going to get worse if you can't find a doctor to operate. There is nerve roots being affected at the L4-L5 level. Once those nerves are damaged, regeneration is unlikely the longer it goes untreated.  I don't know your age or how long you have been suffering, but I am 49 and my LBP started in 96. I had leg pains since childhood and they could never find a cause for that. Now I know it is caused by the BS/SBO which ever you want to call it. Since 96, I have worked thru it, pushed myself and since the doctors were telling me there was NOTHING there to cause the pain, what choice did I have. But in 06, I finally had to stop working. The pain was just too much to bare. So it has been almost 3 yrs since I have worked and still fighting to get disability. My health has declined rapidly over the past 5 yrs. I can not even clean my house now without putting me down for days. I have had to give up so many things I love doing, gardening, baking, canning, camping, hiking, etc....so many things are just too painful, even driving causes pain and numbness.  I spend most of my days in my recliner, as that is the most comfortable for me. I have a really hard time sleeping in bed as lying flat also increases the pain and causes my R. side to go numb. I am in a wheelchair half the time, when I go shopping, to the doctors or anything that would require me to walk any distance. Hopefully you can find a fix before you get to that point.
Are you having any other symptoms? leg weakness/numbness, bladder/bowel issues?
Are you in pain management?

Well humphs, I hope you can find some relief from the pain and the information helps you get the proper care.

Feel free to email me privately if you would like. And if I can be of anymore assistance, please don't hesitate to ask.

Warm regards,
Cindy
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