I used to post on here for moral support but after my surgery, I noticed a bit of relief from my pain. But shortly there after, I have increased pain, multiple new procedures done and a final diagnosis that leaves me speechless and out of hope...none the less, in more pain than I had before my surgery.
I had double laminectomy....hardware and bone stimulator installed. Dr. said I healed up real well but I kept complaining about excessive pain. He said that it was "normal" and to wait until 18 mos to find out for sure. More pain...so I went in for surgery a 2nd time to have my hardware removed. 6 mos to 1 yr later no real pain relief. 2 sets of 4 cortizone shots, some kind of nerve blocker (lydocane) injections, and finally Radio Freq nerve ablation...no significant pain relief.
Finally I got sent back for another MRI but this time with contrast and without, and they see something that finally explains it. My final result is Epidural Fibrosis. Now instead of my doctors working for me, those 2 words "Epidural Fibrosis" means the only thing they can tell me is, "Sorry, I wish we could do more".
But there is good news, my Pain Management Dr says, "Most people that have this are either bed ridden or wheel chair bound." so yeah I feel encouraged by now knowing what I have to look for.
I have learned to not trust the pain scale they ask us about....1 to 10 1 being minor and 10 being the worst pain you ever felt in your life.
I have broken a toe and my hand and that was bad but the only pain that surpasses my pain right now, is the day after both surgeries. 5 yrs of intense unrelenting pain that interrupts my sleep, keeps me from spending time with my family is as far as I am concerned, is a full on 10 because it is subjective. The only thing that seems to take the edge off is drinking. But I know I am not supposed to do it, especially while I am on so many meds. But so far, it seems to make me not care. I am not talking about getting totally blitzed. i am talking about 3 to 4 beers and then I can relax. With all my pain meds and sleep meds and muscle relaxers, I call it my Patsty Cline cocktail.
My sense of humor has gone south lately, But I sure have gotten good at grinning and bearing it. Especially when I have family members that think the millions of dollars my health insurance has paid out for my care is nothing that a $20 back brace and some incense or epsom salts can fix. Nobody will ever understand. And as long as I can walk, I must be only a Motrin away from relief.
btw I thought it was funny when I was trying to choose a subject under my topic, there was about 8 that fit in but the general umbrella term was chronic pain.
When you look up Epidural Fibrosis, you get a bunch of scientific papers and very few Layman descriptions. Everything I have been told and read up on says About 10% of all back surgeries will have some lasting chronic pain. 50% of those will get some relief over an extended time, the rest are subject to what I have. It may or may not get worse. Weight gain, physical therapy, diet have little effect on pain. Its very misunderstood. My pain Dr says the last chance I may have is the nerve blocking electrode thing... but since my pain is caused by scar tissue, there is a good chance, putting that thing inside me will cause more scar tissue so I am pretty much against it.
Has anyone else tried it? Has anyone else gotten pain relief from doing anything?
I would appreciate any kind of input. This is a last resort kind of thing. I am at my wits end. I am so tired of this pain. Very tired....