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Seeking Advice on Research, Doctors

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:39 AM in Chronic Pain
Hi. I'm a 47 year old woman with chronic pain at the left side of my waist. I know I have a spina bifida occulta and unilateral pars defect at T12, both on the left.

The Dr.s I've asked about this over the years have kind of pooh-poohed this as much of a cause of my pain. But, finding nothing else, I'm on muscle relaxers and get lots of massage.

My massage therapist was becoming alarmed at how much pressure I was wanting on the left side of my abodomen and asked me to follow up with my primary care doctor. So, now we know from testing it's nothing in the colon and nothing gynocological.

Now I'm doing my own research showing that the SBO could affect everything from my hammer toes to constipation. I'm ticked that doctor's seem to view you as a body part rather than a whole to be able to put the puzzle pieces together.

I'm about to go back to my Spine Care Doctor. It's been years since my MRI that showed these defects. Should I request another? Please give any advice you have that might help me get an accurate diagnosis. Also, if there is another elusive person out there with left side waist pain, I'd like to virtually shake your hand. I feel like a freak and everyone looks at me like I'm nuts.

Thank you. Renee


  • Hi Renee --

    I am just rushing out the door to see my surgeon but I will post when I get back. I do have some thoughts on this that I'd be happy to share with you....

  • I am going to post a link to an older post pertaining to spina bifida occulta. I don't know if there will be anything useful to you but it won't take long to read through it.


    Also take a look at the following website:


    There is a fact sheet for SBO and there is a map that you can click on that provides a list of providers state by state. I thought you could use that as a beginning point to help you find a spinal specialist who might be more knowledgeable about the types of problems that are caused by SBO.

    In most literature it states that SBO does not usually cause back pain. Probably all the doctors you have consulted with in the past are looking at statistics and refusing to see that you could be the one in a hundred who has problems. Since SBO is a vertebral anomaly, and since you know you have a pars defect at T-12, it makes sense to me that there is some instability in your spine at this point. If a bone is sliding over the bone beneath, as in spondylolisthesis, it often results in a compressed nerve...which could result in all kinds of pain.

    You might want to find a spinal specialist associated with a teaching hospital or university. They are used to seeing more unusual cases. Or look for someone who specializes in scoliosis or spinal deformity.

    I do think you need to have some up-to-date imaging. A CT scan or MRI would be a good place to start. I wouldn't be a bit surprised if it shows some sort of slippage. Do you have any referred pain? Do you have pain when standing but are OK sitting? or??

    The T-12 dermatome runs right around your mid-section about where a belt would go...so it makes sense that your pain is coming from the T-12 area.

    I think you need to gather as much information as you can and go armed to your appointment with the doctor. Are you seeing a fellowship-trained spinal specialist? Be sure you are going to either an orthopedic spinal surgeon or a neurosurgeon who devotes his practice to issues of the back and spine.

    I'm sorry I'm not much help. Hopefully someone else on the board will have some ideas for you.

    xx Gwennie
  • Thanks for your reply Gwennie. I appreciate the links and will check them out. I double-checked my Dr.s bio and he is fellowship trained in physical medicine and rehab. But, I'll also look around to see if on the the universities in the DFW area has someone if another opinion looks like a good idea.

    No activity seems to make the pain better or worse. Although it worsens over time until I get a chiropractic adjustment/massage to bring it back to bearable again. The only thing I really can't do is remain still for very long. I've got to stand/sit/figit/lay/stretch pretty regularly or I'd lose my whole mind. It just feels like a toothache over the whole iliac crest.

    I use a thera-cane tool and/or tennis ball against the wall to get pressure into the waist/buttock every day. And I've developed a habit of walking around beating on my hipbone with my fist. I think it's like electric stim, a distraction.

    Thanks for the support here. It's nice to feel validated.
  • There are tons of good doctors in your area. A physiatrist is naturally geared up to avoid surgery so you may want to see a neuro or ortho surgeon for a second opinion.

    I have a thera-cane too. They can be useful at times.

    Take a look around this website. You'll find lots of useful information and great articles written by different spinal specialists.

    If for some reason you find that the pain generator is not coming from a disc or vertebra or something, you should find someone who is very knowledgeable about orthopedic cases, and who does body work, fascial work, etc. What caught my eye about your post this morning was your comment about being treated one limb or organ at a time, rather than as a whole. Surgery did not solve my pain issues and both my surgeons pretty much told me to "live with it." " This may be as good as it gets...." So I started going to a guy who has a degree in Chinese medicine and who works with several orthopedic surgeons in my city. The first thing he did was look at my posture and the way I carry myself...beginning with my feet.

    That old song from childhood --"the leg bone's connected to the thigh bone...the thigh bone's connected to the hip bone..." turns out to be meaningful. I couldn't believe how the way I held my feet was causing a great deal of rotation in my spine, was causing me to carry one hip higher than the other, etc....My therapist, who I call my "rearranger," has been working with me almost a year and now my SI joints are stable and I very seldom need to be realigned. He does work with the fascia which is like a giant fishnet that holds all the soft tissue in the body together. When it gets tight, you end up with trigger points, etc. When one side is painful, the body automatically compensates and you can built up all sorts of issues -- shortened muscles, ligaments, etc. Your problems could very well be along these lines if it turns out you don't have an actual "spinal issue."

    Good luck in your research.


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