Jackie, That is just awful. I feel so badly for you. Please get an appointment to see your pain doctor as soon as possible. Let them know how bad your pain is and just maybe they will try to squeeze you in sooner with the doctor.

I pick up my prescriptions every month from the Pain Doctor's office. I am on narcotic meds to handle my spine pain, as well as the PN pain. When I pick up the scripts, I am given a new pick up date 27 for days later. I see the Pain Specialist every 4 months, his assistant, every two months, with the pick up dates in between for the meds. I still have quite a bit of pain; but without the meds, life would be even more difficult.

I sure hope and pray you can get some needed help soon.

(Gerry)

Jackiey Dear Lady!!
 

Glad you have emerged from the other end of that spike! Praying you have better days handling that pain in future days, especially as you begin to move through winter toward sping and your special flowers in the backyard.

Prayin for you my friend,
Mark56:hug:

Your Message
 

Sorry to hear about all of your experiences. I also had the SCS trial and it did nothing for the pain I have been experiencing for the past 11 years without a diagnosis. I am so glad that it looks hopeful for you. I am awaiting insurance approval for a pain pump to be used with Prialt (synthetic snail venum). I am scared of the side effects and continue to research all I can.
God bless you and will keep you in prayers.

Good to hear from you!
 

I was wondering how you were getting along. I'm so sorry the SCS proved ineffective. :hug:
This pain pump has me very very intrigued! Wow, I've never heard of synthetic snail venum. Please keep us up on this! It sounds very interesting and I'd love to know anything about this that you'd share!

I sure hope and pray this will come thru for you.

Rae
:grouphug:

But..... is the venom from a synthetic snail, or is the venom itself synthetic........[I know, the whole board is groaning at my attempt to bring a smile. Now you know how my family feels]. Yep, there comes the crooked shepherd's staff, I am being JERKED off stage.............. good..........bye..............
Mark56, who will keep his day job.

WELL, Mark!
Let's just go straight to the SNAIL and see what it has to say about this!
http://dl2.glitter-graphics.net/pub/...s3xkdha3n9.gif

Dr Appointment tomorrow.....at last!
 

Ive been trying for the past 3/4 weeks to get an appointment with my Rep for a retweaking session!:rolleyes:....FINALLY got an appointment for Thursday 16th Feb..........I feel at this stage that my stim is just not powerful enough.

Im also having a review appointment with my Dr tomorrow (Monday) I requested this meeting because Im a bit concerned about the pains Im getting(which I THINK are spasms) and I need some advice. Plus I dont feel the stim of much benefit and feel Im losing interest in it, or else its losing interest in me!

I want to ask him about paddles, the Nevro system and now this new one that was mentioned from Boston Scientific, I think, where the stim 'remembers' your every movement.

After reading all the posts on here about how a lot of you can get coverage in your lower back , I WANT it in my lower back :( but I cant get it there. Yes I get it in my legs and yes its good, BUT I want it in my lower back too. Whats the point in me having it in my legs when Im walking if my back is aching too? So................................although my Dr only does the leads, he is very well informed, I do trust him, so I want to go through these options with him and see what he thinks. There are a lot of positives on here and I want some of them, I really do. Its over 18 months now since I got my stim and yes I would say Im in a better place mentally, but I wouldnt say that the stim is doing what I thought it would do at this stage. My legs get massaged once I lie down, but hey who wants to lie down all the flipping time. I want to live my life and get on with things....and when I read of others who can have relief in their backs then I WANT IT TOO!!! not too much to ask is it? Thing is.....if there was a possibility that I could get the paddles or even the Nevro system..........do I have to wait a certain amount of time for my insurance people to cover it? ...................................

Well these are some of the things I want to discuss tomorrow. I feel Im 'out in the cold' so to speak. I want something else done.... I suppose I feel that once something is either being discussed or done, then Im getting somewhere.........we'll see! :rolleyes:

But surely this isnt it!!! surely I can expect more............or am I being greedy...especially when I read the stories that some of you have who are in so much pain and discomfort and a lot worse off than me............should I be grateful with what Ive got and just get on with it?? I dunno.........


Jackie

No WAY are you being 'greedy', or expecting too much, Jackie!
Like you said, others here are able to get coverage in the lower back, so why shouldn't you! The thing that has me concerned is when you said that your unit isn't doing what it used to. This could raise alot of questions and it's definitely time for a sit down with your Dr.
IMO, anything can be improved upon, so surely he can go over some options with you. I wonder if this is a tolerance issue? Or, the battery becoming weaker? (I should hope not), or your pain is increasing and the unit isn't able to keep up (God PLEASE don't let this be the case!) :eek:
I dunno, I'm just throwing some thoughts into the air.

I firmly believe what others have been saying as they express their disappointement in the follow up care they aren't getting. An SCS is something that needs to be maintained and kept up to par. Yet, it seems in most cases these things get implanted in us and that's that. "Don't call til you need a new battery".....:mad:NOT the way it should be!

I hope you have a very constructive conversation with your Dr at this upcoming visit. Bottom line, your unit isn't performing up to par and this needs checked in to.

Mercy me, I can plainly see there is alot that needs improved upon with these things. We should have a right to be heard and there is no excuse for the reps not being in closer contact.

I hope this visit will have a positive result, Jackie.

:hug: Rae :hug:

Quick someone, tell Eva and ......... about PW
 

Another possible, potential, maybe actual pain pumper!!!! Eva needs to know, and was Paul the other..... or Brent.... or...... my mind has snapped into a grey hair moment.

Sorry,
Mark56:eek:

Jackiey Dear Dear Lady
 

Now, Lady Jackiey [and I use this for to me you are of stature and to be taken seriously], you need to drop the word GREEDY from your vocabulary..... yes indeed. Do recall pain, PAIN, PAIN,AGONYis, and will ever remain [until Star Trek becomes reality more so than fantasy] SUBJECTIVE. THAT is the point dear Dear Jackiey!! No One can know your pain, the precise reason any physican or consultant will endeavor to have you mark your perceived pain on a 1 to 10 scale. NO ONE on this board had ever better DARE to compare their pain to another and suspect their own is worse, less, the same, or imaginary...... my goodness, I have written before until we are all fitted somehow with a Pain Meter on the body which can objectively index the pain impulses travelling the nerve highway to the brain.... it will be impossible for any human to compare their pain to another..... impossible. This is why triage in accident situations does not ever take into account the pain of a sufferer, instead deferring to treatment of those who can be discerned as being in jeopardy of loss of life........ THEN the pain sufferers are considered.

Please dear Jackiey, go forth and strive to attain the best care you may obtain through your med system, whether paddles, revision, a newer system, or some approach your physician may otherwise propose. If you have the means, you are your best advocate, your husband second in line as advocate in order to strive toward lumbar pain management. I believe the new unit of which you speak and its adaptive pain "memory" is not BS though [oh,my, did I just write that about my beloved company?] for it seems what I read was relevant to Medtronics or ANS. It is in the threads hereabouts.

Ready, Set, Go..... get on the warpath, and do not stop until you feel you have run the gamut and recieved the care best for you. In all honesty, I will remind you I have a BS unit which is paddle mounted at the T8/T9 nerve trunk portion of my spinal cord. Through this iteration, I have absolutely obtained treatment and means to manage pain from the waist down. That is about as plain as I may write it. BS is not the only manufacturer, and they do not seem to give one whit about after patient performance, care, opinion, recommendation..... but then I wrote such of BS elsewhere recently. If I seem somewhat putoff by BS..... well, you have taken my words in the literal manner they were meant. All manufacturers are probably about the same, even whomsoever Brent works for, since we live SO very close together, I invited him to coffee or some such only to receive a resounding silence....... methinks I heard a pin drop all of the way out to Greystones, Ireland.

Cynical about companies? Yes, I am developing that air, because I perceive they do not care. Finis!

So Jackiey, get it done. You can do it. Try for a higher thoracic approach and you should attain waist down coverage as I enjoy. You can do it, you can do it.

Mark56
Still Prayin, but not pumping BS:D