By Robyn Sheren on Friday, December 21, 2001 - 08:52 am:

I wondered if anyone here could shed some light. I am a 37 year old female..mom of 2. For the past 7 years I have suffered witha chronic pain syndrome that has been diagnosed many times, by various practitioners. On MRI I have a clear-cut herniated disc at L5S1...annular tear which is now totally "dehydrated".

On Physical medicine exam, I have a definite SI dysfunction...with a pelvic rotation that won't quit. Everyone says I have lax ligaments.

My pain is a constant...there is a sensation of clunking and cracking with every move I make...every breath I take. When the SI (or something in the pelvis) locks out of place {this is what if feels like} I get a severe choking sensation in the lumbar..but also throughout that entire side of my body. The pain (lock) flips from right to left.

I have tried prolo of the si ligaments to no avail. At the current, I am being encouraged to have a fusion with instrumentation at L5S1. I would do it in a flash if I knew it would stop the "lock". Now..I feel my shoulder joint, and ribs moving in conjunction with the lower lock.

Have been through rounds and rounds of pt..mannual and other. Can't seem to strenghten the muscle...all the professionals say I'm toooo loose. One dr. said she suspects EDS..but my biopsy came back negative.

Ok....lastly...(I'll throw this in in case anyone has any insight)..I had a myelogram in September - and since this time have had a constant headache from hell. It was believed to be spinal headache (from the csf leaking out)..but despite 2 blood patches..still persisits. All in all..I'm a pretty desperate girl.

Any wisdom...I would so appreciate.... what to do?? Thanks , Robyn

By Greg on Sunday, December 30, 2001 - 03:14 pm:

Robyn,

My best advice is still prolotherapy. How many injections and treatments did you have on your SIs?? Prolo for me has taken months to notice any difference. You really need to stick with it for a while to really get the results. If prolo wasn't working, there are definite reasons why which need to be addressed (maybe too weak of a solution, or maybe a hormonal deficiency). I didn't even know that EDS could be diagnosed with a skin biopsy- but regardless, you have symtpoms, which should be enough proof for you. Maybe finding a new prolo doc would serve you well. Good luck

Greg

By Robyn on Tuesday, January 01, 2002 - 12:02 pm:

Thanks Greg..
I just noticed your post. I did try the prolotherapy with 2 different practitioners. We also used variations in sclerosing solutions - (with a basis of the "Hacketts" solution - but there was no improvement in my locking SI whatsoever. The last osteo I worked with on this felt that after a 3 rounds (maybe 8 injections each) - I just wasn't going to respond. It seemed I would "subluxate" the si joint immediately - or not be in good allignment at time injection -which wasn't always even easily corrected with mannual adjustment. I know the prolo "scarring in" takes about 6 weeks, so if you go unstable in that time, don't you just wreck the benefit of the prolo? The last dr. I used has a 98% success rate with it too...does famous dancers etc. One hypothesis is that my unstable disc (L5S1) just stresses the si joint too much to allow the prolo to hold...any thoughts?? What kind of hormonal pieces may be involved here?
Best, Robyn
ps: Yes the EDS skin biopsy is available, but can only identify certain typesof EDS - not the hypermobility form.

By Greg on Wednesday, January 02, 2002 - 04:19 pm:

Robyn,

I will soon being having my extremely loose SI's injected, and I will keep you up to date with my success. What I can tell you is that your doctor is not doing enough injections. My doctor told me that my SI's will require about 50 or 60 injections points EACH TREATMENT. It's gonna hurt like hell, but I know it will be worth it in the end. Also, when my neck was in terrible shape, it took 15 treatments of about 40 injections each before I got any noticeable relief. About 10 more treatments and I am 99% pain free in my neck and have been for over a year. Now, I know the neck and the SI's are different stories, and I'm anticipating needing 30 treatments on my SIs. Holding the adjstment is important, but it will take much more than 3 treatments, even with 50 or 60 injections, to hold our extremely damaged and weak SIs in place. The amount of injections would seem to be the problem here in my opinion, and that may just be your doctor's policy or all that he or she is familiar with. Please do no succumb to SI fusion, because there's no real reason why a good prolo doc shouldn't be able to contribute to your life. GOod luck

By Robyn on Monday, January 28, 2002 - 07:14 am:

Hi Greg..
I just noticed your post to me about the need for an extreme # of injections in order to benefit from prolo. Wow...this sounds like an awful lot of sclerosing...in order to judge if it's even the right therapy. Do you think there is a risk involved in creating this much scar..or inflamtory response. I wonder if the immune system may rebel or something. In my case..the drs. experience was that if it was working..there would be some "signal" and then the prolo should be continued - but with me there wasn't a single seccond I could say it helped at all. Well.... I may need to revisit this...I wish there was a way to know for sure if it's worth the risk of the aggressive treatment..I'd hate to get all those injections and find out it's my L5S1 disc that's the real culprit.

Please keep in touch and let me know how you do. Where is your dr. located?? Good luck to you...
and thanks for sharing your experience!!
Robyn