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'.

[humphs60]

spell check...Bertolotti's syndrome

[atlantadeb]

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.  

[DrNoopurMD]

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.

[chefcindy46]

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

[humphs60]

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...

[chefcindy46]

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

[bookreader]

have just started reading up on this syndrome.  My pain started in my knee.  Therapy didn't help, an injections didn't do the trick either.  I have had x-rays and had a MRI about 6 weeks ago.  Therapy made my pain worse.  Now I am taking Celebrex, but it isn't helping.  I have another doctor's appointment coming up soon and he is going to want to inject my spine.  I know this because he actually mentioned it before.  When I take prednisone I have a reaction which makes my eyes feel as though they are going to pop out of my head.  When my knee was injected, a day later my eyes felt the same way, my face was very flushed, my heart seemed to race, felt yucky.  This ortho surgeon says that is just a normal reaction not an allergic one.  I'm worried about the injection and I don't know if it will help my pain.  I now have pain in my knee, thigh, hip, and back.  Sounds crazy, I know.  All this extra pain since I started therapy.  I no longer go.

I was always active, was walking four miles a day, using hand weights, loved hiking and gardening.  I always took care of myself and never worried about lifting something heavy, etc.

Any help would be appreciated.

[HeidiCrockett]

My pain started 4 years ago with pain in foot. Fast forward to today, I know it's caused by pseudoarticulation where my lowest transverse process (L5 or L6) is fused to hip bone (ilium/sacrum) on left side because fluorscopically-guided steroid injection stopped pain vs L4/L5 spine injection did nothing.  My pain radiates down to my right ankle.  Doctors looked at me funny when I said I'm on crutches because when I walk my back pain goes out of control.  RIDICULOUS it took an accidental xray 4 years later to figure out what's wrong with me, I have all the obvious symptoms of BS.  One woman said she had to go to 6 surgeons in Boston to find one knowledgeable about BS, I've gone to two locally and both were like "maybe SI joint?" blank stare "I don't care about you never visit my office again" message.  Find someone who is knowledgeable on BS, a SPECT/CT test can confirm pain pattern/that it's  Bertolotti's Syndrome

[HeidiCrockett]

Forgot to add that I take www.cardiacmiracle.com 6-12 scoops per day (2 scoops works like 2 ibuprofen AWESOME) to manage my pain, without the supplement I definitely would have had to be on pain meds which I refuse because I want a clear sharp mind. 200mg caffeine (Stay Awake brand Wal-mart) helps too, I take max one per day, and use a prescription SPS PowerCream K-L-B (compounded by pharmacy) includes topical lidocaine--rub on my back 4-6 times per day. I still have to take 500mg muscle relaxer or 2-6 ibuprofen per day if pain really bad. PEMF helps HEAL nerve injury, acupuncture and "cupping" help with pain, I can't confirm any other treatment actually WORKS to HEAL. I have tried every possible modality you can imagine: massage, chiro, nerve specialist PT, inversion table, prp injections, acupuncture. If money is an issue look for Community Acupuncture Clinic $15 per treatment for pain relief is good price: https://www.pocacoop.com/clinics/search-by-state/

[chefcindy46]

I just found this, and sent you a message. The only doctor I have found that knows anything about this Syndrome is in Cleveland Ohio. His name is Dr. Michael Steinmetz at the Cleveland Clinic. You can research him at their website.

As for the rest of your post, I answered that in the message.

Best of luck to you. God's Blessings,
Cindy

[humphs60]

Bertolotti's is a transitional vertabrae that 4 to 8% of the population has and many will not know as most doctors are clueless about this. I would not think that your knee pain can be related though since it is an issue usually with the L5 Lumbar Vertabrae.

It sounds like you have allergic reactions to cortisone & prednisone so I would stay away from it. As crazy as it sounds, I would suggest seeing a Chiropractr to see if it is just you being out of alignment. Many times when my back is in spasm the muscles pull my hip out and make it painful to walk, sit, sleep or anything else.

Good luck,


Ken

[TRhyno03]

Thank you so much for the links. I found out about my Bertolotti Syndrome back in 96. It was the usual MO, doctors couldn't find the cause of my pain, I was 19 and couldn't even tie my shoes. I found out about BS January of 08 and was almost relieved to find others experiencing the same things I was. I am now 31 and I fight everyday to manage the pain and make it livable.

[chefcindy46]

You are welcome. I hope they helped you find answers. And with any luck get the proper diagnoses from a doctor.

What people really need to understand is this IS a birth defect. It may not begin to show problems until there is an injury or something. We really need to be PROACTIVE when it comes to our health care. Take print outs to your doctor, insist on the proper tests to prove/disprove. And NEVER give up.

Keep up the good fight and God Bless,
Cindy

[jennldud]

First time reader and poster...After 3+ years of LBP on the right side, I became a regular with my Chiropractor.  We both scratched our heads--maybe thinking it was SI Joint issues causing the pain.  I finally sought out an Ortho who specializes in Spines and Hips.  Dr. Bernard Pfeifer of Lahey Burlington (Mass).  After looking at x-rays and a physical exam, he diagnosed with 99% certainty that I have Bertolotti's Syndrome.  He had a whole list of treatments from the basic pharmaceuticals (NSAIDS) all the way to surgery with everything in between.  I'd have to say the man is close to God in understanding the syndrome and how to best treat it.  I'm still in the initial treatment stages--MRI next week with a follow up on PT.  I'm a personal trainer and yoga instructor as it is so I've been coping with the pain for some time trying to "stretch" what I thought were tight hip flexor and lumbar/spinal muscles.  The kickboxing class I also teach certainly hasn't made it easy.  Needless to say, having an idea of a diagnosis and a direction to head has lifted a huge weight off my mind and shoulders.  I hope any other LBP sufferers in the greater Boston area who come across this thread look into Dr. Pfeifer in Burlington.  Best of luck to you, and speedy treatment!  

[taylor70222]

hello all,
iam 18 yrs old and last week i was diagnosed with bertolottis syndrome i have been fighting serious back pain four years now i also played south texas varsity football for three of those yrs (I know it was stupid but i promised the guys i would be there for them we have played together since 2nd grade) and now i spend my days taking opana er flexirell  zanaflex and alot of norco iam in pain all of the time its never stops i have worked out 6 times a week every week for the last 7 years iam now not working out anymore i cant even stand to do taxidermy work because standing and sitting to long kill me iam to the breaking point iam depressed i cant enjoy my senior yr. and the doctors think because of my age iam taking the drugs because i want to get (HIGH) and not because of the pain but the pain is servere and i dont know what to do anymore iam running out of options here. tomorow night is my senior prom and iam affraid that i will be watching my friends dance and have a good time for the tables off to the side if i dance on a hard floor i will be down for weeks, if anyone can help with information with this syndrome or doctors in texas ANYTHING please help!!! Email foxracing_fool03***@****

[taylor70222]

oh i have numerous injections i have had a microdisectomy i have tried alot of P/T i have had NSAIDS iam down to the wire on what i can try

[humphs60]

You need to find a Dr that is well versed with Bertolotti's. It is possible for them to resect the transitional vertabrae if they diagnose the condition early enuogh and you do not have advanced degenerative disc disease.

I hope the prom went great!

[michiganCMA]

Yeap I myself have LSTV with 2 pseudoarticulations. And yes getting a doctor to recognize this as the root of your problem will be most difficult in the aspect that it is a common anatomical variant of the lumbosacral spine. ITs only in about 1 percent of cases that present with LSTV that will have nerve and pain involvement. Fusing of the vertebrae usually fixes most patients problems. As long as its done before the lumbar discs have deteriorated to much

[LWmich]

My 17 yo daughter was just diagnosed with Bertolotti's today. What I am reading is rather disheartening! I don't want to imagine her to go from an active, healthy teenager to being disabled in a few years! She has already been suffering with increasing discomfort for about 6 years. Is it possible that with treatment, her youth will be in her favor? Our next step is to schedule a bone scan with corticosteroid injection. Surgery was also proposed if this doesn't work, but how long do we wait to make that determination? She is on our insurance for only a few more years (through college).

[chefcindy46]

If it was my child, I would certainly opt for the surgery. This will be the only thing that will give her a chance. I had 2 Cort. shots into my L5/S1 and they never worked longer than a week each. She will get progressively worse if this is not addressed BY a doctor that SPECIALIZES in the this defect.

Good luck and my prayers are with you both.

[azzah22]

Okay so I'm reading this...I'm 23 years old and found out last week that I ahve BS. The first thing my doc wants me to do is Physical thearpy...does it do any good?? And the pain in my back has moved around my Right side under my rib cage area and it KILLS me I cant stand it any longer. Reading some of these kinda scares  me b/c I dont want to be in a wheelchair! I played basketball for 10 years until I was 18 and the last 5 years I havent done much, 3 years ago I found out I have Hoshimotos with is an autoimmune disorder for the thyroid...this along with the BS is just about to kill me!

[campa26]

Well i am 20yrs old and i have just been diagnosed with this syndrome by a doctor out here in hawaii. i am in da U.S. army and had to leave iraq after 6mnths because the pain and numbness was just so much for me to even get up in da morning so deffinately i could not go out and do my job nomore... but here one nuero surgeon told me right away what it was that i had and now i am set to have surgery to getit fixed and hope for the best cz nothing has worked on me at all i just had injectons also phys. therapy chirpractor and evrythin u can name but none of it helped but actually i am worse then i was before so now i just hope my surgery helps me out for good cz im too damn young to suffer the rest of my life and thankful for da military i am gettin a ton of disability and extra pay from the government for this also for bein a veteran of iraq... so i jus look at those positive sides to make me stronger and get through this. i hope the best for all of you cz i do know what you are going through and it is a pain (literally) in tha *** hahaha

[Lefty67]

I have been dealing with this same issue for over 4 years. I finally found a doctor that is taking this anomaly seriously. I am scheduled for a diagnostic injection in about a week to double check our thinking on this. We also briefly discussed the surgery options, during which he told me that the procedure where they remove the excess bone has had so-so results and fusion would make things worse. I would be interested to hear from anyone who has had surgery and what their results were.

Just knowing my doc takes this seriously and is not telling me that the anomaly is nothing to worry about has helped my mindset. I have adapted over the last 4 years to what I can and can not do. I have had to curtail my activities as I learn what increases my pain or sets off flare ups. It is a bit of a drag as I use to be very active, but I am learning to live with it.

[Lefty67]

Well apparently I am a candidate for the surgery to have the excess bone removed from that vertebra. The first injection was a complete success, and lasted a bit over three weeks. Doing a second one to verify the results, and then we will be talking to a surgeon about getting the excess bone removed from that vertebra.

The first injection and this one were scheduled with my spine specialist himself. He specifically wanted to do those injections. I called his office a week ago to see about getting some muscle relaxers since the injection was wearing off. He called me himself to get a report from me on the success of the injection. That's when he suggested doing a second one to verify results and then told me that if the second on worked the same, we would talk to a surgeon about doing the surgery. An end to my back pain may be in sight!

[chefcindy46]

That is great news Lefty!! I do pray that it works out for you and makes you pain free. Please keep us updated on the results.
God Bless.

[mamee100]

Hi, I was told by my doc tat i may be suffering from BS and was asked to read about it on the net. I am trying to get some information about the signs and symptoms of people suffering from this syndrome and compare it with mine. Can anyone out there tell me what kind of pain you are experiencing, feeling and condition tat u r having? Thank you