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'.

[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.

[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

[kerrymumof2]

Hi my name is kerry i am 24 years old. I have been suffering with lower back pain on and off since the age of 13.At 13 i had chronic back pain and had Physical Therapy nobody ever told me what it was they just treated me as they knew best.When i had my 2nd child in 2008 i had Symphsis Pubic Dysfunction which is where the pregnancy hormone relaxes the cartlidge at the front of ur pelvis.This left me having PT again.And on crutches for months.I was told this would go away after he was born.It seemed to do so!! When my son was about 8months old i was getting pain and stiffness in my lower back, hip, thigh and groin as i was 23yo i just ignored it until it got more unbearable.Went to my gp they refered me to ortho consult he ordered ultrasound and mri they showed swelling and fluid around my sacral joint/hip. He said i had osteoarthritis in my right sacral joint/hip.He gave me local anesthetic injection into my lower back which gave me relief for about two days.Then i was refered to a spinal surgeon.He disagreed with the arthritis diagnosis as my pain was getting worse and worse.Ihave had so many pain killers i give up finding 1 that works.i am now on anti-depressants as i cannot take this constant pain anymore.Unable to sit/stand/walk for longer than bout 10mins.Cant sleep.Wake up with numb right thigh.Having bladder problems and bowel problems too.He ordered repeat mri and a ct.He has found that the bone in the back of my pelvis was in two pieces it never fused.And i have some degenerative changes.Waiting for my CT results to come back then seeing the spinal surgeon for a follow-up.He has suggested Bertolotti's Syndrome.And reading up on this it does seem possible but as yet i dont seem to have any vertibrea problems to support it.Just lower back and pelvis.I am at a wits end now, just want a proper diagnosis after 2 years of worsening constant pain it really grinds you down.Sorry this is so long.Does anybody have any helpfull comments for me.
Thanks Kerry.

[humphs60]

Sorry to hear of your pain issues, i know how bad it can be trust me! For me it finally became so bad I was referred to a surgeon and after many MRI's, a discogram and a CT Scan they decided to operate. He said due to the Bertolloti's I set up well for a hybrid procedure. They ended up inserting an artificial disc at L4/L5 and did a fusion with hardware at L3/L4. It went very well and so far after over a year I have been happy with  the results.

Good Luck

[chefcindy46]

Kerry, I too am sorry for the pain you suffer at such a young age. Our medical professionals seem like they care less about what the real cause is and only wish to mask the symptoms with pills.
I have suffered the same exact problems you have mentioned for 15 yrs now and still to this day have yet to get a proper dx. They keep telling me it isn't my back that is causing the problems. Even tho ALL of my MRIs, X-rays, and CT scans all state the "transitional vertebrae". The problem I have on the West Coast is not a single doc I have seen has ever heard of Bertolottis and therefore can not dx it.
I would highly recommend that you get COPIES of ALL of your medical records, including the films on CD. They usually will do the film CDs without charge. However the medical records might cost you.

I wish you luck in your search for answers and help and Pray the doctors where you are are more qualified to make a proper dx and correct it before anymore nerve damage is done. Once that damage is done, it can not be undone.

God Bless you and yours and Merry Christmas.
Cindy

[yarrowwren]

I want to thank everyone for their comments.  I'm very sorry to hear what others are going through.  Yet the testimonies verifiy my own experiences and lift the load of angst and worry a little.  It has been sooo easy to feel like I've created my own troubles somehow.  I simply didn't know anyone else with this diagnosis.  I hope to face life with courage, and wish the same for all.

[ottawafemme]

Interesting. I've been struggling with "moving pain" in my legs, buttocks and lower back for about 1 year. Totally mysterious. I finally had a bit of a fit with my family doctor, and got an x-ray done. I have a partially fused L5 vertebrae which I then researched on the internet. I am pretty sure it is BS but a bit discouraged that there is no easy fix. It sounds like some people have been successful with "core" strengthening exercises and yoga...but that surgery has not been successful in the long run. So my exercises have begun -- working towards a 6 pack in the front and steel lumbar muscles in the back and I am fully intending to get there.

[jsmom311]

My 17 year old son was an acitve popular youth. He played football for High School, lifted weights and within 1 year it is all over. He started with low back pain that is now crippling him. He has Bertolotti's Syndrome. We found out after 3 MRI's and 2 CT Scans, not to mention a Bone Scan and a SPECT Scan.

He has had 3 facet injections with little to no help. He is now depressed and due to his inability to be mobile he has lost most of his friends.

With much research, we have found that Bertolotti's Syndrome causes the Piriformis Muscle to go into spasm. So yes, everyone is right, surgery will not help at all. Look up Piriformis Syndrome. That will give you some answers and possibly relief. He is doing the excersises and feeling somewhat better.

[banshechick22]

I have to admit...after reading everyone's testimony I am a bit relieved that I'm not the only one out there dealing with all the pain and the hassle of doctors/disability, but I am so sadened that there doesn't seem to be a cure.

I've had pain for the last 15 years and until two years ago was misdiagnosed with multiple different things.  My BS caused scoliosis on top of all the pain, numbness, swelling, etc.  I've gone through the PT, tests, ignorant doctors, medications, chiropractic care.  

I found a surgeon in '09 who actually researched BS, talked to top doctors in Europe about different treatments and stuff, and we did surgery.  My surgery was to separate the naturally fused L5-pelvic bone INSTEAD of fusing the other side...when my doc cut my bones apparent my nerves jumped off the chart.  Apprently when my bones had grown together they had pinched a bundle of nerves and it didn't show up on any of the tests we did.  The pain was gone!!  But before I could complete physical therapy I got into a car accident and found out I was pregnant.  As the pain got worse (AGAIN), my doctors and I thought it was the weight of the baby.  After my youngest daughter was born, and after some tests, we found out that my bones have (now) grown back together pinching those same nerves.  Shame on me for being healthy!

I've since moved and using my surgeon is not possible.  So I've started the whole process over with new doctors.  It's been a bundle of joy.  My new doctors are concentrating on TENS unit (doesn't work) and injections (I'm allergic to steriod injections).  I want the surgery again...this time I want more bone cut out.  I'm in the San Diego area so if anyone knows of a good surgeon down here let me know please.  Hoping to have my surgery this summer.  Want my life back.

[njweatherdon]

Yeah, sounds like a lot of us are in the same boat here.

I've been researching options for pain management, which seems like about the best thing you can do unless you're willing to take the risk with surgery. I've been updating what's effective for me at http://www.***************.com/blog/?p=296 which is my generally non-medical blog. My two defining aspects of pain management are 1) My head needs to be able to function to get work done (i.e. limited use of muscle relaxants and little or no opiods) and 2) I want to limit use of treatments that are associated with long term organ and tissue damage (i.e., limited use of NSAIDS and acetaminophen).

Generally, I have found so far that a) the green to mute pain signals, b) ice for swelling and c) swimming to take the pressure of the spine, are the three things that work best for me.

I'm starting to looking into working with medical professionals to look into ergomonics, posture, exercises, etc., to manage pain and also to limit potential for degeneration, which seems to be a possibility for at least some people.

[kimmy2011]

I also have BS and the thing that helped the most was PT. I could not believe how great I felt but it was hard keeping up on the excercises as they take some time each day and I had other health issues going on. The suffering and pain with this is horrible. Going to try and go back to my excercises and get back to where I was 3 years ago. Thank God for my Chirpractor who diagnosed it 3 years ago. He says its very common but can be debillitating for some.

[loidetteRN]

hi... im 24 y.o. from Philippines and diagnosed with transitional vertebra today. im still searching for a specialist who can manage this. for now can you help me find more information about BS and treatment options i can have.  thanks

[carolann61665]

I am so sick of the pain..I can't stand for long periods of time can't sit for long periods of time, quit my job as a bartender the daily pain was just to much..now I have no money and my Dr doesn't seem concerned she told me not to let the diagnosis get to me it's just a name..What does that mean I think she doesn't have a clue as to what it is since she wasn't the one to diagnose me it took me 29 years to finally have someone diagnose me. That was after all my friends thought I was a hypocondriac and would tell me you never feel good it's in your head well no it was in my back my legs my arms my feet everything hurt..But the Dr.'s never found anything until I carried on and she sent me to a specialist.so know what..diagnosed but theirs really not a cure so how am I suppose to hold down a job they don't take it well when ya call in all the time besides I feel guilty when I can't help out or do things so I do them anyways and then suffer worse for the next week. For a big part of my life I just thought everyone was in pain like this. Now I know that their are people out their that live a pain free life whats that like..Ok sorry just needed to vent..

[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!

[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

[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.