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I do not know where to start, so I will do a breakdown of issues and go from there..
1.  54 y/o-7 yr post op tethered cord release pain ,after  lifetime bladder and sciatic nerve problems,  had 4 yrs pre-op excruciating pain down sciatic nerve. Stopped working 3 mth pre-op, I was crawling most days after an hr on feet.
was suppose to be in and out same day, woke up 7 days later , had 8 inch scar, Dr stated the cord was not damaged where it should have been and had to keep cutting.   
tried after 6mths to wk, but pain has never gone away .
the nerophathy is severe down right leg and unable to sit or lay down long as I go completely numb , and pain has been so severe I have to limit everything. can't sit on toilet chairs, ect without complete numbness 
now have had to go to er being carried as I will just barely turn and I am in excruciating pain in low back and legs... have had it before, but now it goes to my groin..  it is horrible, Dr did stone panel and released me last two times saying I had a strain. 
have done pt x 20, acupuncture, tens, massage and every pain med, and nero meds, psychological  meds in Lyrica, Pamelor ect....
Blood in urine Constantly with no diagnosis of why and difficulty with urinating worse than before surgery..
2,  have spinal stenosis c spine and l spine
3, cervical degenerative discs

4. two yrs diagnosed with scleraderma ssc which now makes it hard to hold canes, due to hand constrictures  and arthritic like pain.
5. osteopenia, now turned to osteoporosis 
7. Dupytens constrictures hands and feet
8. toes curled and locked, they have been bent and have had high arches since I was born as well as longer middle toes.( that was one of the main signs the Dr thought to check for spina bifida)

hashimotos disease
B-12 deficiency 
and many more issues duets above
am trying to find some type of pain. relief and need a group somewhere of Dr's that can work together.

am on pain meds, which pain mng is now getting ready to release all but cancer patients.... as you can see I have tried all types of pain. meds as well as therapies....  acupuncture, when done correctly with tens and heat massage helped but insurance no longer covers it....  
I have good insurance, but to all those that don't, it really does not change  the treatment you get, just need to find good Dr's. 
I am seeing a nero, Internal med, pain mng, rhematology  and endo, to no avail of enough relief to have a few good hrs a day....
was just taken off my pain meds of ten yrs without detox (due to supposedly new laws).  they gave me straight morphine, to replace others and raise it three times I. two mths.. even after I told them I did not want it and my husband can barely keep me conscious while on it.   

I am now at  a loss of what to do or where to turn.
trying to find new pain Dr,but because I can't have steroid cortisol injections they dont Wish to see me..and the one I have has been banned from doing them for some reason ( I was to have trigger pt I jections w/of steriods) and was told the day of my Appt he could not longer do them.  
 ( I also had to have reconstructive surgery in my upper AND lower back as prior to my spina bifida surgery I was given steriods injections and my tissue and muscles deteriorated to the point you could see my bones through my skin.
I have tried everything, need any advise or suggestions........ I am strong minded, but can't take much more.....
where do I go from here?


  • SavageSavage United StatesPosts: 7,250
    hello blaze2kk !
    welcome to spine-health
    please click on link for helpful information!
    Honorary Spine-Health Moderator
    Please read my medical history at: Medical History

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