Time, drugs and being careful

[Trojan68]

I used to follow the old website. I am on disability from diagnosis of PNE. Actually I started out with a double fusion L4,L5,S1 which was a success. 5 months after my surgery I developed this unexplained pain. I will have to say I was doing lots of stretches and had just gone to a stronger band only 3 wks before pain set in. In fact I was not sure if I should go to orthopedic doctor or doctor (urinary/colon problems???). The orthopedic doctor was not too helpful except to stay away from exercise for awhile and come back in 3 wks which to us is eternity. The trip to ortho doc was an hour away and I'd be in tears all the way home from pain - careful not to take anything until about 1/2 home. My regular doctors ran all sorts of tests and found nothing - and pointed back to my back problems. So embarassing to discuss the 'internal' pain - I'd almost pass out if I sneezed or coughed. No one understood. My ortho doc sent me to a neuro doc for possible rheumatoid answer - I was to the point that I just wanted to find someone closer, so didn't want to go to that doc - when I looked up his name, I found out that he was part of the Houston team for PNE - AND the symptoms that were mentioned were - MINE!! I found out that that doctor did not take my insurance so they sent me to do a phone interview with the doc that runs tests, etc. for PNE. According to my input, he said it was worth coming in, but I'd need some tests to rule out anything else. I couldn't find any of my specialists who would do them. They all said PNE was rare. Also, testing that my pain doctor ran came back positive for arachnoiditis - my ortho doc said no way, but there really was a problem with scar tissue which might be pushing on the nerve. I needed a 2nd opinion for a possible implant for a stimulator. Well, that doctor said the scar tissue was pushing too much on the hardware which was pushing everything forward. So I had repair surgery. They said it was unreal just how much the hardware was encased with that scar tissue - just as much anteriorly, but no time to deal with that. Get this. After that surgery, my already horrible pain was to the point that I was not able to work - could not sit with or without cushions. Only lying down would help plus drugs. They went in again to check on what that doc thought was a floating bone. No relief. He wanted to go in again but I said no. Oh, and another test came back positive for arachnoiditis.

I went to the 'Houston Team' guy just south of Houston who ran all the tests and I came back (very) positive for PN and was told it was probably PNE but that is omly verified in surgery. I elected to forego surgery and just wait it out. I continued with the manual PT which helped only temporarilly, but at least I learned how to better 'release' muscles that I was tightning. I've learned that I just cannot do much tensioning exercise which brings on a pain meltdown. Was sent to a Pain Medication doctor nearby who put me on (generic) Neurontin, Elavil with continued Norco and Relafen as needed. During that same time I had a ruptured gallstone and had surgery to remove the gallbladder the old fashioned way. The medication I'm on keeps things in check much better. My mind is like jello 1/2 the time from the meds. I don't know how a person can take those AND take on a sitting job. Reclining or lying down is how I 'relax' - If I sit very long at all, the pain comes back.

I do want to tell people though that my pain is under control with the meds enough that I can at least sit through a meal, watch a movie out and even ride in the front seat vs lying down in the back seat on long trips - and this is some 2 1/2 yrs since the beginning of my pain. I elected NOT to have surgery - mostly because I'd already had enough and knew it would bring on even more scar tissue. The odds didn't look look enough that I'd have enough relief from PNE surgery that would be lasting. Of course each person and situation is different.

[Celeste]

Wow, I've seen posts of yours under that name on some Google searches for PNE; there was some other pain forum you posted on I think. I'm glad to know your update, and that you have found a way to manage with this. Wishing you all the best.

[Trojan68]

Hi, Celeste. Yes, I remember you from Pudental.Info - which was a Godsend. Glad to see this forum now. The problem with us oldsters is that we should stay active on these forums to give some glimmer of hope to newbies who feel like no one out there understands. But, beings mine is better (as long as I don't do anything TOO stupid) I tend to not come back on here. I'd gotten notices that someone had responded to a couple of my posts from the old website, yet when I tried to get back on, I couldn't. Good to 'see' you again.

[Amanda]

Welcome to HOPE Trojan

i remember your posts from before, thank you for coming here and for posting your story.
As for meds well they do drown out the brain functions....that is normal for us all and many of us have hours a day where we barely function and to hold down a job would be impossible for me too.
Thanks for your update

[Quilter 2]

Trojan;
Welcome. Like you, I'm putting off the surgery because I've yet to see some great Odds. I've had dozens of surgeries also. After awhile, you just say wait a minute. Give me some better percentages and I might go for it. I really wish we could all meet somewhere, get on the news, get Drs. in the audiance and maybe if for no other reason but greed the Drs. and Pharmacutical companies would take notice. At least there would be "codes" the ins. companies would understand so we don't have to fight them to pay for stuff.
Regards;
Doreen