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Help!!!! Chronic severe lower back pain and now spina bifida occulta

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:34 AM in Lower Back Pain
Hi everyone! I am new to this site and I am searching for some help. I am 27 yrs old and ever since I was 15 I have had really bad chronic lower back pain. It gets so painful that I am forced to crawl on the floor because I can not stand up. I am in constant pain. I found out that I have spina bifida occulta and they found it on accident through my x-ray. The Dr says there is nothing they can do and to just take muscle relaxers for the rest of my life. Learn pain management. This back pain has caused me not to be able to work. It is that bad. I get stuck bent over, it hurts to sit. I had medical insurance but had to quit my job due to the back pain and having a disabled child.. What can I do?


  • I had one Dr tell me that I had scoliosis. Another Dr told me I didn't have scoliosis but a torn ligament. I had the x-ray done and was told it was spina bifida occulta and that was causing all the pain and there is nothing they can do and she sent me home with medication and did not refer me for an MRI
  • I live in Louisville, Kentucky. I just don't want to take medication the rest of my life. I don't even take it now because I am scared of side effects so I usually just suffer through the pain. I can't work because I am in constant pain. I am just lost as to what to do
  • i am sorry that you are in pain .as well as all my back problems i too have spina bifida occult ..but when i ask my doctor ..would that give me back ache ? he and others said no ! many people have this birth defect and never know that they have it unless they have an MRI/ct /or x ray on their back. are you in your 30/40s? the reason i ask is many people in that age group have it because it was not know about folic acid when you are pregnant ..no a days mums to be are told to take 400mg of folic acid to prevent this neural tube deficiency ..like your doctor has said you cant do anything about it now ..all i can suggest is heat/TENS and pain killers ..
  • i am brought to tears by hearing your story. i'm getting angry just hearing you say they told you there's nothing they can do. i wouldnt accept it. why should you have to crawl around? why not start a post about your condition. ask people with spina bifida how they were treated. maybe there are solutions....
  • spina bifida and spina bifida occult.in the UK mums to be were not scanned for this neural tube deficiency until the late 70s .and many babies were born with horrific spinal problems ,,now every mum to be is advised to take folic acid before considering having a baby and afterward to prevent this disease
    for the small amount of people born in the 60 and before there spina bifida occult is not a problem to them and many don't even know they have it.but like i have mentioned there is nothing that can be done for the 40 something that have it!..today's mums to be are routinely screened for spina bifida and have the option to terminate if detected.but in my time as a midwife and now a health visitor i have never come across it .{apart from my husband!!}
    KATH... {STRAKERS } wife
  • My daughter was diagnosed at the age of 22. She is your age now. Nicole, I am so sorry for your diagnosis and know it scares you. However, I know that there is help available to you.

    First of all, let me say that my husband was in Viet Nam and sprayed with Agent Orange. If your dad was a Veteran, you need to go to the closest VA hospital and take your diagnosis with you. Even call a VA rep. It is possible that your are eligible for financial and medical benefits if it is caused by exposure to chemicals from either of your parents' service to our country.

    Second, get in touch with the Spina Bifida Association. They have a newsletter and are also advocates for persons with Spina Bifida.

    Third, you need to be referred to a good specialist that handles Spina Bifida. I don't know where you live; however, you will find that (a) you are not alone, (b) many people find pain relief without being "drugged out", and (c) you will learn more about your condition and what to look for should you have other signs such as urinary tract infections, incontinence, etc., and (d) may find assistance with medical bills and/or meds with March of Dimes or the Easter Seal Society.

    You also need to file for Social Security Disability if you have not done so. Your state probably has a state rehabilitation organization, which can assist you with obtaining your disability benefits or any other benefits you are eligible for.

    Finally, Nicole, there are many different forms of Spina Bifida. If you are able to walk and sounds like you have no brain damage, you, like my daughter, are one of the fortunate ones. While the diagnosis is scarey, it is not the end of the world. I agree with the person that advised you to get a second opinion; however, it is difficult when you have lost your insurance. That is why we so desperately need health care reform in the United States!

    I wish you well and hope that this will assist you. It is rare to be diagnosed at your age; however, like you, my daughter had symptoms all along. Unfortunately, no doctor could make the proper diagnosis until she was older and had other symptoms. It was the VA that found it...a great neurosurgeon in training happened to be the doctor she was assigned to that day. She graduated and became one of the major surgeons at Children's Hospital in Dallas.

    You are not alone! Please check your family history to see if anyone else has had this diagnosed, or especially if anyone was serving our country (your parents) in combat duty. Best wishes!
  • Nicole, I looked up your local organization! They are in your own town!!! How lucky is that!

    They are: Spina Bifida Association of Kentucky
    982 Eastern Parkway
    Louisville, KY 40217-1566

    They offer a large variety of assistance and are a very proactive group! They will provide you with a better understanding of your diagnosis, doctor referrals, newsletter, assistance with programs that you are eligible for financially, medically, and psychologically.

    I used to be a social worker in Texas until I was diagnosed with cancer. I just happened upon this page because I was looking for any information about pain management and thought it might be a good site for my daughter. It turned out to be angels allowing me to provide a way to use my social work skills and make a referral to one in need. Thank you for the opportunity to provide you with this information...it makes me feel useful! I hope that you find all of the resources you need at this point. Hopefully, the association will provide you with help getting back on your feet financially and medically! God Bless You, Nicole!
  • is alot more common than people think. for the most part it has little affect on people and manefests as just an unfused portion of their tailbone, while for others, it can be chronic debilatating just as regular spina bifida. my 10 year old daughter was diagnosed with this while investigating bedwetting/bladder problems a year ago, and some of the external markers for this are a dimple in the upper butt crack (sorry), and sometimes a patch of hair in the small of the back.(can also present as a darker pigment of the skin)
    my daughter so far is slightly more prone to twisting her ankles, and has since learned to control the bladder issues...but will always need to watch and be away that this is present, and to take care of the spine, that she may have future issues.
  • hey..new girl here!! was just tryn to find out some info on my spinal conditiona nd came across this site..i was over joyed and saddend at the same time to read all these comments..i to have been told numerous things that are rong with my back and have a list as long as my arm i cant sit for to long i cant stand for to long i cant bend without gettn stuck and hav to crawl up the stairs sometime as the pain is just so bad, iam sorry that ther are other people suffering the same symptoms as me yet i cant help but be a little happy to find people who understand what i go through evryday..iam on a list of drugs that up until recently i didn like to take as im worryd of side effects long term effects ect. but i just cant go about my daily life without them now..iam 27 and have always had back trubles since birth and its inevitbly getting a lot worse, here are some of the things i have been told i have yet are no cure for just pain management and painkillers.. Oesteochondirtus, shuermans disease, arthritus, spina bifida occultta, degenerative discs and sciattica, be good to talk and also get some feedback :D
  • I am sorry to hear you pain but i to know your pain. I live with it everyday - the docs think i am crazy i guess haha - they wont help but yet i cant even work cause of the pain just like you. I wish some docs would listen to us and maybe give much needed pain meds.
  • I would suggesst a Mri,sorry about your pain,you take care....
  • i have had back issues since i was 12 with numbness that would effect my lower back, bottom and upper legs if i sat too long, and UTI's. At 15 i wasa diagnosed with spina bifida occult but nothing could be done. i was told nothing would effect me. the more research i have done the more information i have seen to link spina bifada occulta and back pain. I just want to know if anyone has had any luck with treatment or relief from pain. please help
  • So, I was just diagnosed with Spina Bifida Occulta in S1 region. The doctors, I think, are assuming its nothing serious. But doctors always seem to assume that. Ive had terrible Sciatica pain for almost a year now. Its recently getting worse. I can sleep on my right side. some times I cant stand on my right leg. Can spina bifida be the cause of my sciatica pain? I also cannot lay on flat surfaces. It is very very uncomfortable on my lower back.it used to pop in when id lie on the floor. any answers?
  • Hi im 12 and i have spineabifida but i can walk but my uncle also has is but he is parlilized from the wais down. I see you all talking about Spina Bifida Occulta so does that mean you can walk or ur paralized or is there other kinds of spineabifida? I am confused! I am in soo much pain, my doctor tells me to take ibprophen but it dosent help any! I have practicly been in pain for two years now but all the doctor says is take ibprophen do excercises and ice/heat but none of it works any suggestions? Please answer my 2 questions!!!!!!
  • I am an adult with spina bifida occulta found when asked for research regard ing chronic utis 3 weekly .Now getting temporary bouts ofsevere excrutiating pain & low back stiffness with angina kicking in .
    This I reckon in is utis breaking through but am not able to access appropriate treatments because of myths incorrectness found in text books that it is in 10 % of popularion causing no problems.As a result don't get appropriate treatment just quick fixes . When it could go into sepsis causing our lives to be curtailed earlier because Doctors think antibiotics are poison this isn't funny .Heart symptons & evidence too were ignored weekly
    Suspect it will eventually lead to multi infart dementia TIAs.
    On the brighter side what works , for how long, changing & adjusting uti medication may need a few - one of which could be metronizadole.
    Paramol [ only one that works] Only take temporarily, TENS & acupuncture cupping . I have also been thinking steroids to could play a part when acute if there are other hereditary conditions such as osteoarthritus & polymyalgia rhematica. Acupuncture cupping too.
  • Hi,

    Like others in this thread I had spina bifida occulta diagnosed incidentally from an x-ray. I do wonder if there's any connection between the spina bifida occulta and my severe lower back pain and sciatica. My rheumatologist of all people mentioned this when he saw my back x-rays (unrelated to what I was seeing him for). I wonder if it's less harmless than the medical community says it is.
  • Hi,
    London UK based. Have to answer this as I have seen the text books & Doctors who say nothing wrong & nothing can be done & it makes me cross because some of us know the aggravation & how it can affect immunity , hormones etc.Yet the spina bifida organisations also seem to discriminate too. Has research flown out of the window .They have even written it in my online medical record so they can leave me in limbo dying of sepsis?
    Last time [ a few weeks ago I was begging at over 5 A&E depts not testing none gave effective assistance or a plan of action . This time it went on for 5 weeks till I started to self medicate with acupuncture cupping & TENS / ultrasound therapy with paramol & uti medication & metranizadole.
    The complications are temporary bouts of excrutiating low back pain & spacity causing me to nearly crawl . This could resolve in a day if I self medicated with uti medication had & metronizadole . This time my pyuria count was 80 & Urgent Care Doctor refused to test saying her hands were tied . An expert [ surgeon / researcher/teacher] in Harley Street asked for me to be referred to him in NHS UCH by GPs who are refusing saying it would waste tax payers money because a PA invented a letter that could be maladministrated.
    These Low Priority letters are being sent to cancer sufferers too??!!!
    My spina bifida [ occulta] was found in 1969 when asked for research into why I was forever waiting 3-5 hrs to access antibiotics [] now called poison] 3 weekly for chronic utis . Since a neurogenic bladder & reflux found regarding double ureters . Had a keyhole urethrotomy in 1980 . The specialist I now see at Whittington Archway Campus rotates the medication using a very powerful microscope but the complications are not his remit??!!
  • Anonymous said:
    Hi everyone! I am new to this site and I am searching for some help. I am 27 yrs old and ever since I was 15 I have had really bad chronic lower back pain. It gets so painful that I am forced to crawl on the floor because I can not stand up. I am in constant pain. I found out that I have spina bifida occulta and they found it on accident through my x-ray. The Dr says there is nothing they can do and to just take muscle relaxers for the rest of my life. Learn pain management. This back pain has caused me not to be able to work. It is that bad. I get stuck bent over, it hurts to sit. I had medical insurance but had to quit my job due to the back pain and having a disabled child.. What can I do?
  • I was born in 1932 with a hole in my back and the doctor not knowing what it was sewed my back up. I had no significant problems except do not touch my back as I had terribly pain and tingling when someone did. Shortly before age 69 I started falling for no reason and my gait was off. I began having excruitiating pain in my lower back and legs. My medical doctor did not know what the problem was so he sent me to an orthopedic specialist who immediately did an X-Ray and diagnosed me with spina bifida and tethered spinal cord. He sent me to a neurologist who concurred with his diagnosis and told me if I did not have surgery to release my spinal cord I would be in a wheelchair and lose control of my bladder and bowels and referred to me a neuro-surgeon who immediately scheduled me for surgery. On August 4, 2004 at age 70 I had surgery to release my spinal cord. The neuro-surgeon nor the neurologist or orthopedic doctor could not understand why I had not had anymore problems than I had over the years as it was all old damage. The neuro-surgeon said I was a miracle walking. I have nerve damage in the left leg and have various and sundry pains in it and still have pain in my lower back which is worse sometimes than other times. I know that there is a chance my spinal cord could re-tethered; however, my lower back and legs do not hurt nearly as bad as they did before I had the surgery. I have had physical therapy, taken various medications, had injections for pain and nothing has helped the pain I have now. I just have to live with it. I don't know where any of you who has Spina Bifida live; however, I live close to North Carolina and I had my surgery there. The surgeon was great. I would recommend that anyone with spina bifida see a neurologist if you have not done so. If you would like to know where I went I will be glad to post it. Please let me know by posting on this site.
    I know how it feels to be in such terrible pain and I hope all of you get help. You are in my prayers.
  • JoJoeJJoJoe Posts: 1
    edited 05/28/2013 - 6:01 PM
    It's great to find this site! I was diagnosed a few years ago when I dislocated my pelvis. Like others of you here the occulta has been dismissed as being of no consequence. For YEARS I suffered from UTIs but I never understood why until now. I'm in awful pain at the moment but I'm lucky, have found a really wonderful osteopath who really helps. He's told me I have to do more core-strengthening exercises which will help support my spine. I get a lot of numbing down my arms and tend to fall and trip a lot - does anyone know if these are also symptoms?
    To those of you really suffering I truly hope you'll get some relief.
  • Hi! So, I was told by one doctor that I had to quit dance and soccer due to my back pain caused from Spina Bif Occulta.....and it hurt all the time. However, I went to an amazing doctor in Houston who referred me to a physical therapist and my back RARELY hurts me, and it has been 14 years. What we did at physical therapy was stretch my hip flexors (laying on a table, one leg pulled into my chest, other leg hanging off the table) and strengthened my core - crunches, medicine ball work, etc. I stretch my hip flexors in a lunge every single day and do abs almost everyday and went from extreme pain all the time to a pain free and active life. I dance, teach dance, and do cross fit. I hope this helps someone out there!!! Don't give up. I was told because my hips (and hamstrings) were tight, it was pulling on my lower spine and causing the pain. Best wishes to you all.
  • Anonymous said:
    Hi everyone! I am new to this site and I am searching for some help. I am 27 yrs old and ever since I was 15 I have had really bad chronic lower back pain. It gets so painful that I am forced to crawl on the floor because I can not stand up. I am in constant pain. I found out that I have spina bifida occulta and they found it on accident through my x-ray. The Dr says there is nothing they can do and to just take muscle relaxers for the rest of my life. Learn pain management. This back pain has caused me not to be able to work. It is that bad. I get stuck bent over, it hurts to sit. I had medical insurance but had to quit my job due to the back pain and having a disabled child.. What can I do?
    I have very similar problem. I've had back pain since I was a child. I was diagnosed with scoliosis at the age of 8. My lower back swells to the point of me not able to move. Went to the doctor cause I couldn't handle it any more. Diagnosed with spinabifda occulta. Doctor thinks spinal cord is tethered. But also due to lack of insurance no referral was given. I've searched high and low for help. I was told to go home and lay on a heating pad and she didn't treat what was wrong. Makes you feel unimportant in the world. If you happen to see this please let me know if you finally got the help you need. I'm need help! I'm 30 years old and have 5 kids that need me to be able-bodied.
  • Hi, guys
    That is bull. I was diagnosed with Spina Bifida Occulta when I was 41 ( by accident, also) . I had the option to have surgery to untether the spine from my back. I chose not to. I am 62 yrs old now and I am having sciatica pain and leg. Numbness . I am wondering if it is related to my Spina Bifida.
    Surgery should be an option for you .
  • tricia.inpainttricia.inpain Posts: 4
    edited 09/26/2015 - 12:42 PM
    Also, you should see a neuro surgeon and have them look at your MRI.
  • I feel your pain! (Literally). I was just diagnosed with spina bifida less than a year ago though I've probably had it for a long time. My spine specialist never specified but I'm pretty sure its spina bifida occulta. I have back pain with literally every region in my back. My upper region (cervical) is almost scoliosis and soon will me, my middle (thoracic) region has 3 or 4 shortened vertebrae that never developed when I was developing before I was born, and my lower (lumbar) region has an extra full vertebrae. So when I say these things have worked for me somewhat, i know what I'm talking about with chronic pain. What my spine specialist prescribed me with was 50mg of tramadol (basically vikidin) and sent me to physical therapy. I did pt once every 2 weeks with 1-2 hour sessions and when I kept up with my exercises I did notice a difference. Now that I've been too busy to do them for 6 months, I can feel the difference. However, don't rely on painkiller alone because it will over time diminish your natural opiate receptors like it did to me. I would see about going to pt and seeing if they can first start off with easing your muscles so they aren't so tight and will then allow you to fully stand up with less discomfort and more mobility. Hope this helps :)
  • SavageSavage United StatesPosts: 5,427
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  • mldrjommldrjo Denton,TXPosts: 1
    I found this article and thought it would be helpful. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4241478/ it is a study on SBO and low back pain. Looks like you don't have to suffer with the pain or taking medications. 
  • SbillsSSbills United kingdomPosts: 1
    I know this discussion was set up ages ago...but I just wanted to share that I too have had severe back pain and neurogenic bladder for years, was told my back pain was coincidental to spina bifida occulta and elhers danlos syndrome...I have recently been diagnosed with a tethered spinal cord due to the pains and neurological impacts and an mri showing a low lying conus. It is perhap's,  a good idea to have a look at that condition and see if it fits with what your experiences are...as it may be that you can get some help with it after all
  • I understand how bad the pain can be and I'm sure I would have as hard of a time as you but I have had this since birth as well as Hydrocephalus. I don't know how much help this will be but my suggestion is mind over matter. Most everyone I know doesn't understand how I even get up in the morning it hurts so bad. 1 I'm used to it and 2 I try to just push it out of my mind it's hard to learn but you can help control your pain with the power of your thoughts it takes TIME AND PRACTICE every single day multiple times a day but you can learn how to do it! :) 
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