Health knowledge made personal
Join this community!
› Share page:

spina bifida occulta and severe back pain?


Posted by Nicole D.

I am so confused and lost as to what to do. I am 27 yrs old. I have had chronic lower back pain since 15 yrs old. It gets so bad that I am forced to crawl on the floor sometimes. When that happens I can not stand up or sit down. It is hard to bend over or sit down a lot. I have chronic severe pain. It never goes away. I went to the DR and they did x-rays. Today I got the results. The Dr said that I have spina bifida occulta on my lumbar 4. She said that is the source of my severe pain in my back. She did not suggest an MRI or anything. She said there is nothing that can be done. She gave me muscle relaxers. I do not want to live for the rest of my life on pills. Could it be teathered because of all the pain I have?
 
Answers (4)
Sort by: Newest first | Oldest first
I have spina bifeda in L4 and L5 and I had extremely painful pains in my back growing up as well but i just thought it was because I was growing and at 14, I was almost 6 feet tall. Well at 18, I was diagnosed with spina bifeda and the doctor suggested physical therapy (which made the pain waaaaay worse since this is a bone problem, not a muscle problem...hello?!) And he also suggested steroid injection. Ummm Im not going to do that either and my mother did not want me to as well. Pretty much there is nothing we can do but learn to live with it. Some days are bad, and some are good. a few years ago, I woke up with extremely sharp pains in my lower back and realized there was a lump on the left side of my spine. Doctors dont know what it is but im sure its related to the spina bifeda. The pain was unbearable. Now, several years later, the lump is still there, but I can deal with the pain. If someone pushed on it, it would hurt so bad I would get nauseous. It really sucks and I wish there was something someone can do for us other than take pain meds or muscle relaxers. Someone out there has to know of something!
I have lived with Spina Bifida oculta since birth and the back aches. I havbe had 2 tethered cord releases and if you are having sever lower back pain they may want to test you for a tethered cord. Other symptoms would be cahnge in walking, bowel or baldder problems. It sounds to me like the doctor just wanted to treat the pain and not figure out what was cuasing it. If I were you I would go to a nerosurgeon and explain your symptoms and he may do more than just give you muscle relaxers, that dont always work when you need them to.

I have one word for you:

CHIROPRACTOR!!! :) 

I have come to find out that doctors are utterly worthless when it comes to this area of expertise.

Yes, if you can find a chiropractor who knows what spina bifida occulta is they can adjust your spine to where it won't bother you at all. 

I actually had to take my xrays to a chiropractor before I was finally diagnosed with spina bifida occulta. The Dr. referred me to a urologist because he thought the pain I was having sounded like it could be from a kidney stone problem. The urologist ordered an xray and the radiologist who read and reported on the xray simply reported that there were no kidney stones or any other visible problems (?!?!?!?!?). Well, that ended up being the BS conclusion of the century. The hospital never actually let me see the xray but because I was so perplexed on why I would be in such great pain I was persistent with the hospital and they finally gave me a digital copy of my xray on a CD. When I looked at the xray it was SO obvious to me that there was something seriously not right with my L5 vertabra. So begged my Dr, the radiologist, and the urologist to take a look at the xray but none of them would. They insisted if anything were wrong the radiologist would have seen it the first time. I had no idea what the problem was but could it was so easily seen on the xray, and I couldn't even get anyone to put the disk I was carrying into their computer and look at the stupid picture and let me know if it was normal or not. I finally made an appointment with a chiropractor as a last resort and took my xray with me into see him. 

A HUGE MIRACLE HAPPENED! :-)

When I saw the chiropractor he actually knew EXACTLY what the problem was before I even showed him my xray. It turned out that he had suffered from the same problem all through his teen years and his pain was a big reason why he went into chiropractic work. I was SO relieved when he told me that they could fix it. They have had to adjust it a little differently than they would other people but I am now 100% pain free. And this diagnosis actually EXPLAINED A LOT from my youth also. I am 32 years old, male, and just barely figured out a few weeks ago what was wrong with me. Phew! I cannot fully describe or put into the words the enormity of relief that I have felt since. And I will tell you one thing I have come to believe very sincerely. It was not until I asked God to lead me to an answer before I finally found one that very same week. I know that God lives and will actually answer our prayers! Praise the Lord!

maybe you also have scoliosis or the beginnings of it.

the slight twist in my spine became evident to me at age 20 and over the past 38 years it has twisted further.  some times the back pain is not too bad at all but then suddenly it will start to get worse and worse and can last for weeks if not months.

 Then suddenly it eases off again. I think it is when my spine is twisting again the pain is bad but then it sort of settles into position, or the muscles get used to the strain of the new twist so then the pain eases off a lot, until the next slight twist and stretch

I also have tethered cord syndrome and diastematomyelia, had mild polio at age 9 so not sure really what is causing what

 Please insist on further tests, the medical profession abandoned me altogether at age 35 when I became bowel incontinent overnight, later bladder incontinent at age 42. If only the MRI scanners in those days had been as good as they are now maybe something could have been done to stop me getting so much worse

Don't let that happen to you, being incontinent for nearly 30 years is no joke and it has ruined my life.  If they diagnose and help you early enough it may not happen to you, I do hope it doesn't - best of luck - Linda in UK

NOTICE: The information provided on this site is not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on Wellsphere. If you have a medical emergency, call your doctor or 911 immediately.
Post an answer
Write a comment: