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Spinal Stenosis Sufferers Community
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1524811 tn?1333241301

My story

I think 1 of the best ways we as fellow sufferers can help 1 another is to give our story, so here is mine.

I suffered chronic back pain while growing up, but my parents ignored it assuming I was trying to be dramatic.  When I got pregnant with my oldest daughter in 2002 the pains in my back & legs got progressively worse & my PCP prescribed massage therapy through the remainder of my pregnancy. I was 20 at the time.  After giving birth to my daughter the pains got worse.  I spent the next year having MRI after MRI. CT after CT & all showed a progression of stenosis through my lumbar spine.  I was told to try muscle relaxers & Physio. Neither worked & it was then that I was started on my never ending barrage of pain meds.  The pain would get so bad that there were days I couldn't get off my couch & the days I did attempt it were spent in fear that my legs would suddenly go numb & I would be left stranded with my child & unable to move. In 2005 I was finally sent to see a specialist specializing in stenosis & was then informed that this was rare.  He had never treated a patient so young with such a high degree of stenosis.  I was scheduled for L5-S1 decompression surgery in January 2006. Right up to the minute before I was put to sleep for this surgery my mother was determined I was faking.  Surgery apparently went well, I felt ok & was discharged 2 hours after waking up in post-op.  Over the next week I noticed a foul smell & a lot of drainage from my incision. It turned out that I had a massive infection which was causing me to bleed out over a liter of fluids from my incision daily & severely limited my ability to heal.  Due to this infection my Physio was put off a few months to give it a chance to heal. By the time the infection cleared I was already 6months post op & on increasing pain meds to help me deal. The numbness that traveled down my legs continued.  I spent 3 months in Physio & found that it was not helping me at all, so it was discontinued.  I have since been scheduled for repeat surgeries twice, both of which have had to be cancelled due to unplanned pregnancies.  I have been sure to try & take it easy with my back so that I don't strain it, including taking birth control so that I could go through the subsequent surgeries.... life had something else planned it seems.  I am scheduled for yet another series of MRI's after the birth of my son who is due April 5th.  Hopefully it will show my dr what I've been telling her for the last year & that is that the stenosis is no longer limited to my lumbar spine but now spreads up my back right up to my shoulders.  She refuses to add on a breakthrough medication as I am currently on 100mcg of Fentanyl every 48 hours & that should suffice.  I can't explain to someone who doesn't suffer the chronic pain how hard daily tasks are.  The numbness down my legs still continues randomly & like most I do have some days that are better then others. I am now 28 years old & have suffered with this for long enough.  I understand there is no miracle to make it go away & it will be something that I have to live with every day of my life, the thing that bothers me is why should my children have to suffer because of it?

I hope that even though this is extremely short it helps to give a little light into my story.  I hope everyone takes the time to post theirs & if you have any questions feel free to ask.  It may take awhile for me to respond back as I am a busy mom, but I try to check in once a day if time allows.

TY for reading & hope to read your stories soon

Melissa
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