NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   SCS & Pain Pumps (https://www.neurotalk.org/scs-and-pain-pumps/)
-   -   DAWNGRI re failed SCS (https://www.neurotalk.org/scs-and-pain-pumps/183630-dawngri-re-failed-scs.html)

Mark56 02-06-2013 11:02 PM

DAWNGRI re failed SCS
 
Dawn-
I so hope you will see this in the board, because you are posting in the stickies where general information of a specific and general topic is found. This area is the intended place for discussion threads, and will tend to provide you far greater reach and participation.
Caring,:hug:

dawngri 02-17-2013 05:58 PM

mark
 
Quote:

Originally Posted by Mark56 (Post 954940)
Dawn-
I so hope you will see this in the board, because you are posting in the stickies where general information of a specific and general topic is found. This area is the intended place for discussion threads, and will tend to provide you far greater reach and participation.
Caring,:hug:

I followed your link Mark........but there is nothing here except what you wrote.
I am trying to learn how to use the site.......I'll take any advise you give.
Sorry..........dawn

Mark56 02-17-2013 06:07 PM

Hi Dawn
 
Quote:

Originally Posted by dawngri (Post 958010)
I followed your link Mark........but there is nothing here except what you wrote.
I am trying to learn how to use the site.......I'll take any advise you give.
Sorry..........dawn

You have taken the first step. This is where you write your story and how you gain input from all of the rest of us regarding your experiences.

The canvas is blank until you begin to put the picture in place on it.

Now, write up a storm!!

Blessings on you,:hug:

Rrae 02-17-2013 06:10 PM

Hi Dawn~
 
You're doing just fine! Mark created this 'thread' for you to post your testimony on and anything else you'd like to share. This way, others will see it and you'll get alot of good responses and input. This thread Mark created for you is down where the active posting is, rather than up at the top of the screen where it says "Stickies". (where you were posting before)

You're also welcome to post on anybody else's thread that you see here in the SCS forum.
You'll get the hang of things in no time! :cool:
I learned by poking about the forums until I realized how easy it is to start a new thread or simply add posts to other people's threads.
It's alot of fun, so please stick around, as we'd love to get to know you!

Don't be afraid to ask questions!

Rae
:grouphug:

dawngri 02-18-2013 09:52 AM

FAILED Spinal Cord Stimulator
 
Has anyone out there had a bad experience with the SCS? After all my back surgeries due to an accident, my NS recommended an SCS for the pain.

The trial was fabulous. But the permanent implant was a disaster. ......I got home and vomited for 12 hrs. This misplaced one side of the wires. So every time I turned it on, my chest wall was being zapped.

As you can imagine, horrible things were happening. I stopped using it and after a few weeks, the tech asked the doc to check with X-ray, and the migrated wires were found.........the doc sent me home using just the good side....

Yet still, I used it only twice....I have severe muscle spasms in my back, chest, other places and stabbing chest wall pain........Then I stopped using it and still the symptoms continued................when I began losing control of my legs, it was removed................only 45 days after implant.

But I still have horrible non stop muscle spasms and can not tolerate any minor temperature change........I go from freezing shaking chills to being a furnace in a matter of minutes.........now it is 4 months later, still no better....

The anesthesiologist that placed the SCS and my NS, both said they have never seen this happen before.............
Now back to the pain which is worse than before the surgery in addition to the other problems that began with the SCS...........

Anyone out there have this problem?????????.

DAWN

Saffy 02-18-2013 12:44 PM

Hi there ...

Nice to meet you Dawn.

Have they not suggested maybe a paddle lead be better for you? I know when I had my first leads the sensation went down both legs and between them ... and sadly, not in a nice way.

I just couldn't use the stim at all .. so when I next saw my Surgeon he suggested the paddle lead .. it was BRILLIANT!

It hit the spot totally ... then I got an infection. Despite two weeks in Hospital on PIC line anti biotics, the infection came back and they had to remove everything ... my battery, leads and the paddle lead in my spine.

They tried again last December to place the paddle lead back in my spine, taking even more spine away, but unfortunately it was was far too risky to carry on.

I was devastated - utterly and totally. That, for me, was my last hope and I hid away at home taking all my meds and becoming increasingly depressed.

You're in the right place for support .... we all have our moans and groans too and they don't just have to be about the SCS ..

Welcome.

eva5667faliure 02-18-2013 01:55 PM

Quote:

Originally Posted by dawngri (Post 958137)
Has anyone out there had a bad experience with the SCS? After all my back surgeries due to an accident, my NS recommended an SCS for the pain.

The trial was fabulous. But the permanent implant was a disaster. ......I got home and vomited for 12 hrs. This misplaced one side of the wires. So every time I turned it on, my chest wall was being zapped.

As you can imagine, horrible things were happening. I stopped using it and after a few weeks, the tech asked the doc to check with X-ray, and the migrated wires were found.........the doc sent me home using just the good side....

Yet still, I used it only twice....I have severe muscle spasms in my back, chest, other places and stabbing chest wall pain........Then I stopped using it and still the symptoms continued................when I began losing control of my legs, it was removed................only 45 days after implant.

But I still have horrible non stop muscle spasms and can not tolerate any minor temperature change........I go from freezing shaking chills to being a furnace in a matter of minutes.........now it is 4 months later, still no better....

The anesthesiologist that placed the SCS and my NS, both said they have never seen this happen before.............
Now back to the pain which is worse than before the surgery in addition to the other problems that began with the SCS...........

Anyone out there have this problem?????????.

DAWN

Dear Dawn
i am sooooooo
sorry
praying relief some
miracle

someone who cares

dawngri 02-18-2013 05:26 PM

Hi Saffy
 
Quote:

Originally Posted by Saffy (Post 958186)
Hi there ...

Nice to meet you Dawn.

Have they not suggested maybe a paddle lead be better for you? I know when I had my first leads the sensation went down both legs and between them ... and sadly, not in a nice way.

I just couldn't use the stim at all .. so when I next saw my Surgeon he suggested the paddle lead .. it was BRILLIANT!

It hit the spot totally ... then I got an infection. Despite two weeks in Hospital on PIC line anti biotics, the infection came back and they had to remove everything ... my battery, leads and the paddle lead in my spine.

They tried again last December to place the paddle lead back in my spine, taking even more spine away, but unfortunately it was was far too risky to carry on.

I was devastated - utterly and totally. That, for me, was my last hope and I hid away at home taking all my meds and becoming increasingly depressed.

You're in the right place for support .... we all have our moans and groans too and they don't just have to be about the SCS ..

Welcome.

Thanks for your words of support Saffy......I am so sorry you too have not had success with the SCS. I may have permanent injuries from the stim and will never try it again.

If the docs knew what went wrong, and a way for it not to happen again, I might consider it. Because the trial took away ALL my pain. It is very depressing after yrs of debilitating pain, to have that week of being pain free, and the promise of more pain free days ahead. And then to have it taken away and worse than before..

Wouldn't it be great if a spinal surgeon read our posts and and said, "Step into my office because I CAN help you"

You hang in there too Saffy

Rrae 02-19-2013 03:54 PM

Hi Dawn!
 
I too battle back spasms! :rolleyes: They started when I had a migrated lead removed. I know how horrible they can be and how it can affect every aspect of our life!
Do you take anything for the spasms?
My doctor has me on Baclofen (I'm not convinced it helps alot, but maybe some). There are other muscle relaxers that might help.
I also have Klonopin on hand, and it works when things get pretty bad.

I just hate it that you are suffering so much! :hug:

Rae

Mark56 02-19-2013 04:50 PM

Rae- I just knew
 
I just knew you would come along and chime in with very helpful stuff!!!
Yay:hug::winner_first_h4h:


All times are GMT -5. The time now is 08:05 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.