Hi to everyone

Hate to jump in here late, but I just noticed Silver Lady's earlier post to Steff, and found it very interesting ... because the following excerpt looks like something that I would have posted about my own condition. How close our symptoms and conditions seem to be.

"It's much worse in one leg than it is in the other one. I limp 24-7. It is difficult to follow conversation because of the level of pain. I also have difficulty standing because of the pain. Like you it gets to where it feels like a vise in my legs and it feels as if someone is crushing my spine from the top down. But I refuse to go to a wheelchair. I keep pushing. Sitting down frequently."

Anyway, you mentioned that you have to sit down frequently. And I wondered If that's because you're tired, or because the pain is greatly reduced, when you're off your feet?

I learned from a neuro doc yesterday that because my pain lessens greatly while sitting, (for other reasons too), that it wasn't PN, per se ... and that my pain and discomfort were emanating from pinched nerves in the L4- L5- S1 area of my lower spine ... which he called it Compressive Neuropathy.

In an attempt to shorten this ... he'll need to review the latest MRI films, but felt reasonably sure he could surgically open and repair this area and free the nerves ... and I would be relatively pain free. And maybe, just maybe, be able to walk again!

I'm trying hard not to consider this a done deal quite yet, because a lot could happen, and there have been so many disappointments in the past ... but at the very least, there is some reason for optimism.

I know all of you have been involved with PN and this board, for a much longer time than I, and this is probably redundantcy from a newbie, but I thought I'd pass this on, just in case it might help someone. The other reason for my post, is that I am so happy with the news ... that I just had to share it with somebody.

Thanks

Gerry

I appreciate your post. No one has ever called this compressive neuropathy. And you are right when you say the pain is reduced greatly when I'm off my feet. I have degenerative spinal disease caused from rheumatoid arthritis. There are many places where my spinal cord is compressed. But no one has mentioned surgery to me. My rheumatologist said it was not operatable. So I've never pursued it. And my bones are so fragile right now from the osteoporosis that I'm not sure any one would touch it.

I am so glad you are excited. But be very sure about what you are doing. Surgery can help in some cases, my husband just had surgery for a blockage and a cyst in his spine. It turned out well. But I also know people who are in worse shape after surgery on their back.

Billye

Did I read that someone tried webotin? Or something like that...we are meeting with our cancer doc monday and my husband has had nothing but extreme pain for the past year from chemo...he is on 2700 mg of neurton, 5000 mgs of B12 and percacets daily..we do nothing anymore..he gets through work (he is a tile contractor) comes homes and sits in his chair and takes his pain pills, smoke some herbal meds and off to bed he goes, next day same thing..he cannot walk anyplace..is in constant pain all the time..as a couple we do nothing at all..except eat together me on the couch him in his chair..cannot touch forks, knives..eats with plastic..cannot stand any type of draft on his feet..we are going to ask the cancer doc for a pain specialist..something has to happen...any suggestions?

yes it is less pain when i sit down and i too have the same exact back problems you do. just had my mri looked at and the doc said that even though i have those issues at l4 l5 s1, there was no reason for my feet and legs to hurt so much with the symtoms i have.
i would never consider surgery unless i saw three people who were tops and then i would try other modalites first. (just dont do prolotherapy shots if you have nerve pain in your body)
surgery is how all this started for me
only foot surgeries.
we want to believe that surgery will help us and sometimes it does. i know two people who had the same surgery that i did and it came out fine. they got to live life. mine did not. i do not want to scare you, but from all that i have read, surgery can bring more problems.
i am in agoniziing pain and if they said lets operate on your back we will fix you and you will walk again, i would doubt it, unless they could prove it to me.
pain is awful and i stay at home all day too. i have to go back to work on sept 4 and i do not know how i am going to do it. last year i worked, and came home and sat, i never do anything anymore, and no one has asks me to. it is a quiet life. i am mostly by myself. even my family goes and does things now without me.
it is not a good way to live.
i am so sorry for all of us
stephanie

Hi Ladies ... Again, sorry for not answering sooner, I didn't realize you had responded to the thread. In the future I promise to look at the threads a bit closer.

Anyway, Billye, I too have degenerative spinal disease and suspect some osteoporosis, so it seems that our similarities continue. The neurologist who did the work up is a HMO (Cigna) doc and they tend to look at surgery very conservatively... keeping track of the costs, the odds for success and so on. So I see that differently than a money hungry surgeon wanting to line his pockets.

Although, there is a chance he's unaware of the side effects from PCa treatment (hormone therapy) ... in that it weakens the bones and in general compromises the spinal area ... so things might change after he views the films and we see him next.

I'm retired, Jolene, but I can still imagine how terribly painful and difficult it must be for your husband to continue working while on chemo. If I might ask, what type cancer does he have and is there any mets (metastasis)? Sounds like you guys need to have a heart to heart with your oncologist or pcp and push for a pain specialist. Lots of folks have received help in these pain clinics. They have a lot of tools in their toolbox.

And, as you know, Steff, everyone's so different ... yet so much alike. I know that surgery is a big step and shouldn't be taken lightly, especially considering a failed back surgery in the past, and a vow to never ever consider surgery again. But when the pain is so intense, everything else has failed and you've got wheel chair life staring you in the face, one tends to look at things different. Hopefully everything will work out.

Thanks again to you all for your interest and advise.

Gerry

I also have the samething as Billye and Jerri,when you sit is it better
to have your legs up or down..I have to have them up.
Jolene my heart goes out to you and hubby. For along time i stayed
home now thanks,to J,i get out as often as i can even for short times.
I don't live far from trails so i often take a ride in my wheelchair on
them,really helps your mood,it makes me laugh. We are allowed to do
that..Ask Mel... Sue and ect.