Originally Posted by ger715

I understand someone wanting something as important as an SCS implant information to be as forthcoming as possible; but I have read many of your posts; all I see is someone in a lot of pain for many issues. NOoooo "fluff".

There is the need to get some of our thoughts and feelings out of our system; especially to those who know what this awful pain is like. Although our loved ones do care that we are in pain; most of them really cannot understand.

After a while, many of us feel a certain amount of guilt because we seem to be complaining to our family and friends too often. We certainly don't want them turned off by this. But.........isn't it nice to have someplace to be able to say what we are thinking/feeling, etc. Also, there are ideas/suggestions from others on how to better control our pain as well as ideas on how to tolerate and cope with it. We need each other.


Gerry

Originally Posted by eva5667faliure

Dear Gerry

You are oh so right
I get sick of it

Originally Posted by SFNgirl

Just a few facts of my own. After lots of meds for progressive small fiber neuropathy, I did the scs trial. I really just didn't work. It helped a little but I felt I needed so much voltage to even really make a difference. The doc said my sensory nerves didn't even register during lead placement until a pretty high voltage. So people should just focus on whether their nerves are healthy enough to actually appreciate the benefit of the scs. For this reason, we decided not to go through with it.

However, a month ago I had a pain pump implanted. I don't see a lot here from people on pain pumps. Mine so far is a huge success. (except for one cautionary note, for some unexplained mystery, I ended up w intractable nausea about 3 days post surgery and then spent 2.5 weeks in the hospital! I lost another 15 pounds and had a feeding tube. they really can't tie it to the pump, though they just think it must somehow be related to the surgery. They think,perhaps my neuropathy reacted to the surgery and my autonomic stuff went haywire, but also cant really explain the extreme nausea and headaches).

now that I am home and recovering, the pump is really working wonders. I am now 1-2 in mornings, and while it can get to a 6, we are still working on slowly increasing the dose and I have really high hopes. I am off all of my other pain meds! They are using fentanyl (at a fraction of a dose if were taking orally) and a bupivicain which is a local anesthetic. It does wonders for the pain. I can give myself an extra bolus every 6 hurs as needed which helps a lot. The only issue is the anesthetic, much like an epidural, does make my legs pretty weak after the bolus, so it's a fine line of how much you can use and when I am comfortable trading pain for weakness. At night it's a really good trade!

Just thought I'd share. Hope it's helpful for anyone considering a pump.

SFN girl

Originally Posted by eva5667faliure

hi

thanks totally awesome
any bits and pieces are important
as tiny of thing it could be

i believe
no question is a stupid question

it was also a suggestion
as i originally came on looking
for that specific information
on pain pump
as i was still being worked on
too many things went wrong in
my situation
i just am too afraid to go under
for example while all that was going on
i found my breast cancer while bedridden
my implants were something i wasn't entertain g
but because i am now 53 this is my second year
january 9 2012 had both removed
so point
it was in the left
that side came along fine
my left one is lagging i need to return
it has moved below the sutures
i hope all well with you and it be
a successful story
again thanks

Originally Posted by PamelaJune

Hi there
Many posters here are mindful of both young and old struggling with physical pain being further challenged by the burden of mental health. Many have faced the mental anguish that comes with long term chronic pain by staring it down and denying it growth, others succumb and medical intervention required, and some use "fluff" in the form of the written word to aid them on the path to wellness.

I confess, I am guilty of "fluff" I indulge myself and fluff here and there on the NT site. I apologise, I'm just a down right "fluffer".

I don't get to talk about my pain or my quest for healing, no one I know in the real world as opposed to the online world has chronic pain. Yes, they have other illnesses, but they seek to have treatment and then they get better. I, we, go from one thing to the next in our efforts to "get better" we dream of it and we write about it, but we don't speak of it. Our loved ones are all talked out, they have been there and done this and that and they don't know what more to say.

So I come on here and fluff about and someone replies and I experience a feeling of relief! others face the same uphill battle as I do, they have similar stories, they get me, and for a moment I feel normal. Just like one of my dogs who has just loudly fluffed.

Perhaps a thread can be started that can be funnelled and settings set so that factual information only is recorded for future users to dwell on.

Reason for SCS (describe condition in x amount of words)
Lead or paddle
Successful yes or no
Length of time had it
How many SCS do you have
Recommend to others yes or no
If no why - (respond in x amount of words)

Not sure if it can be done, I agree it would be beneficial to others and with no offence taken an official fluffer.

Phew, my dog really is on the nose today, it's one of those ones that winds it's way up your nostrils, binding itself to the hair and lingers on and on and on. The fluff that is, not the dog!

Originally Posted by pooh_ac

I currently have my 3rd SCS and would not be able to cope without it! I takes care of the worst pain so I can function with only a small amount of other pain medications for the most part.

Originally Posted by revrosefairy

Why is it your third? Do they get old or break?
I am getting my trial scene next week.