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:

mark
 

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

Hi 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:

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:

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

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.

Dear Dawn
i am sooooooo
sorry
praying relief some
miracle

someone who cares

Hi Saffy
 

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

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

Rae- I just knew
 

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

Muscle Spasms
 

Hi Rae......it sure is freaky, the muscle spasms. First they start as a vibration in the back,... As they get stronger, they move around the chest and totally encompass it..................
That's when the shakes start, like shaking chills.........and they vibrate and sometimes jerk down the top of the arms, butt and thighs.
Then,....man oh man, some one turns on the furnace and I am suddenly 105 degrees.................of course, then you sweat, and when the sweat starts to cool.........
bamm! :(You start getting cold and the spasms get even worse.....it's a nasty cycle.
I have tried Baclofen, Soma, Robaxin, Flexeril, Valium, Amrix, Tranzene and Xanax.................the only one that helps is the Xanax. It takes the edge off. I tried Klonopin too.
What works best is sitting in a hot bath tub or using heat packs with the Xanax.

I do believe it has something to do with the wires stabbing the chest wall...
Hopefully some day it will heal..........you are so right, when you say it takes over your life........
Thanks for being so kind....:hug:
Dawn

Spinal Cord Stimulator Damage
 

I have made an Adverse Event Report to the FDA due to the injuries caused by my spinal cord stimulator................the report is complete and online at the FDA MedWatch site....................
I urge all of you suffering from the SCS to file a report. .......
This is the only way the physicians will make an effort to find out why we have debilitating injuries, find out how to help, heal and prevent such horrific damage.................
Send me a personal message and I will be glad to help you file, it only takes a few moments online.
Still suffering after 7 months post removal.....................Dawn G :mad:

I'm so sorry yours didn't work and damaged you so. I have two, and I would be lost without either of them. My rep(I have INS/st. Jude's) says they are usually love/hate for my disease (crps now dx full body complete with gastro paresis) anyway, I'm so sorry and I hope your pain eases. My pain levels were off the scale before I had my devices implanted. My dr. Says there are so many factors at play. I got blood clots during my revision. Not everything works foR everyone. I wish you luck. Again, I'm sorry!!

TK

:hug:

There is another thing ... called a Dorsal root Ganglion http://www.dovepress.com/getfile.php?fileID=12054

It's a little like a scs but based lower down as they cannot get into my back any more.

I am seeing the surgeon on Thursday so will see what he says. It's a VERY new operation and they don't know the long term effects .. i.e. I would be a guinea pig .. weeep weeeep.

I'm open to anything at the moment.

Poor Saffy!

I'm so sorry. What are the possible effects if it doesn't work?

I remember you couldn't get your scs. I felt(and still feel) terrible about that.

I wish you luck. I have never heard of it, but I don't blame you. I would want to do anything to stop the pain!!

TK
:hug:

Oh durrrr I should read better. I see what you said about long term effects

always praying for a miracle
and for you i'll do the same
a heavy cross to carry

someone who cares

If I'm worse off than I am now, it's God's will ... But it's been put forward for me to try .. Again, God's will.

I Pray
 

God will bless your health in ways which restore.
Prayin, :hug: