The paraplegic who can't sit!

[Linda alien]

Well this is my story & I wanted to put it out there incase someone may have a answer for me or maybe this will help someone in the future. I was told I was a T-12 complete. However I have movement and feeling all the way to about two inches bellow the top of my hip. Both front and back. But have no feeling in the buttocks or legs with the exception of upper groin. I always considered myself extremely lucky and very appreciative for all that I have. However 7 months ago that all changed. I was transferring for my wheelchair to another chair. I obviously have use of one hip flexor that works still because I'm able to slightly hick my hip up. If i try really hard. But when I did it that time I felt a ache in my right hip. Over the course of the week the pain became excruciating especially while sitting. I have been to the hospital, I've had MRI'S, Catscans & Bone scans. All tests came back negative. The only thing that helps is to lay down if I'm in my chair for more than 5 minutes I'm bawling tears! Its like the pain radiates from my buttocks into the parts of my hip that I can feel. So I've pretty much been stuck in bed for seven months. And I don't know what to do. If I could find a doctor that would paralyze me higher up I would gladly do it. Because at least then I could sit in my chair be free of pain & get my life back!
Is there anyone else suffering with this?

[SCI-Nurse]

Just so you know, ablative surgery or procedures where they cut peripheral nerves, spinal roots, or even slice through the cord does not guarantee relief from neuropathic pain. These procedures are for the most part out-dated and end up with the person much worse off for both pain and function.

Neuropathic pain and allodynia like this may be helped with some drugs such as Tegretol, Neurontin, or Lyrica (although rarely can be pain be made to go away completely) and some have found some help with medical marijuana. Have you tried any of these?

(KLD)

[Lavender lady]

Have you tried massage therapy or even a chiropractor. I am the same level, I have definite hip movement, get low back pain and need to have my hips adjusted. I get a massage every 2 weeks and the chiropractor about once a month.

[Linda alien]

I really didn't think a chiropracter would do any adjustments on "us" because of our hardwear ect...
& tried massage not help at all! Thanks for sharing, I will take any advice I can get. Breaking my back didn't keep me down as long as this has! Thanks again!

[Mize]

Somewhat similar experience for me. I'm T3-T7 complete and recently started getting pretty severe pain in my abdomen and lower back. The pain corresponds to relatively minor muscle spasms and cramps (or even just stretching). From the nerve pain I'd expect full on knots of cramps, but it feels to my fingers and those of others like slight tightness. Something of a signal is getting through but being interpreted as crazy pain.

[Mize]

Should add that the only thing that cuts the pain is valium but with many negative side-effects.

[Linda alien]

Well my pain is not what they call "neuropathic/periphial pain"
I've done lots of research & that usually occurs at the onset of injury. & I've been in my chair for 20 years. But none the less, it could be pinched nerve in my back or even thought maybe pain refuring up from ciatic nerve? I've tried gavapantin, lyrica, smoke, pain pills.
Nothing helps! A freind of mine had the derz procedure for his peripheral pain. It worked for him. But my pain is not peripheral from what I've read and discussed with others.
I would be willing to take the chance of the knife if I could find a doctor to do it. & I really believe it should be an option for us. I can't stand up & I can't sit down. But I don't think I should have to lay down and take it either!
I appreciate taking the time to respond & offer help.

[Mize]

Have you tried acupuncture? Not dry needling.

[Marlinman]

I am the same as you pain wise. I'm T8 burst my 10 completely out hit in head by large tree during a hurricane in 2008. Been in horrible pain since. However only thing I take that I know works is Lyrica but I take allot 75mgx6 through out the day. You have to get out of bed a move around and try to stay busy. For some reason I can set in any chair with less pain then my wheelchair. I guess it's the angle of the back. If you can't find any relief hit me up and I'll go into details of what all I take and have tried.

[Vintage]

Linda, the type of pain you describe, along with the way it occurred, sounds very much like what many people experience, even without SCI...and a good chiropractor could very well fix the worst of it in just one session. He would probably need to do x-rays first,...for his own information and for his insurance coverage. If the first chiropractor won't do it, then I suggest you move on to chiropractor number two. The choice between having a good chiropractic adjustment versus having a doctor 'paralyze you higher up' is...well,... a "no-brainer".

Here's a link to another Thread on this forum with a related theme, only suggesting the use of osteopaths rather than chiropractors.

http://sci.rutgers.edu/forum/showthr...n-pain-control