Trial SCS in place
 

AND I AM PAIN FREE. Whenever an area tries to overpower the pulsating effect, I can change programs and send a stronger pulse to the area to stop the pain. In the last two days, I have become more mentally euphoric and physically euphoric. I cannot bend my back more than 5 degrees any way for this entire week (or take a shower - good thing you only know me online huh?) but I can squat again - I can very easily squat down low and keep my back straight to pick things up or to sit down/stand up.

The only pain I have is in the back where they put in the trial leads. The surgery went well. They even gave me a picture of my spine with the leads in and the cord to my stimulator. I plan on scanning it to my computer and putting it here for you all to see.

:Wave-Hello: Hi Christine,
This is Awesome News...
I am so Happy for You... My doc keeps suggesting a SCS to me and when I hear news like this it helps me to make my decision towards the trial...
Many Hugs :hug: :hug:
:hug: & :Heart:
Dawn

I am glad for you. I have a spinal cord stimulator in and have had it in for about 7 months. It helps a lot, but it does not take away all the pain. To tell you the truth I don't know what I would do without it. It is a help.

Tracy

I can feel my pain trying to creep in, I then change the program to something different. I just feel so nice right now and am glad I took the chance. Should it only control half in the future, that is half more than I had before.

Thanks.

The only drawback I have with my spinal cord stim is that I am so afraid to turn it up to much higher because I start to get a really bad burning sensation in my fingers. So I leave it set as is and just pray that the pain subsides. I went from having it set at .80 to 1.10-1.20 in about 7 months. The other thing is that it was originally set for most pain in my hand and part of my arm. The pain has now gone up into my shoulder and started in my right hand so in time he might have to go in and redo things to try and cover for at least up to my shoulder in my left hand. I am just avoiding that possibility if I can at all help it. It does help take away most of my pain though except in my shoulder. Thank God for that or like I said I don't know how I would be able to live with all this pain.

Tracy

Hi Tracy annd Christine ~ what brand Stimulator do you guys have? My PM Doc showed me a new stimulator by Boston Scientific, which is REALLY SMALL, and it is "rechargeable", so I am curious if this is what you have.

When the permanent leads get placed in the neck (after the Trial) for RSD of the hands/arms, ar you able to move your neck and back normally, or do you have to be "cautious" with certain movements/activites so that the leads do not "migrate" or become displaced?

Also, how PAINFUL was the permanent implant and the recuperation period from the surgery?

I'm "willing" to try the Trial, but to tell ya the truth--is sounds so Scarey:eek: !!!!

Thanks!

Mine is Boston Scientific. Go to www.controlyourpain.com or www.raceagainstpain.com - While I was in the pre-op room yesterday the Territory Manager, Todd Bladel, came in and discussed in detail what was going to happen and answered all my questions. Then after him my doctor came by and answered all my other questions.

Due to Kaiser docs being extremely busy (and my PM is a great doc-so I think people are asking for him more), The trial last 7-10 days. On Monday I will be going into the doctors office, where he will remove the temporary leads and I will have to go back to where I was before the trial for approx 1-2 months. Then he will implant the permanent.

The rules are this: with the trial, I cannot lift my arms above my shoulders or bend more than 5% any way at my back for the entire week. When the permanent gets put in you are not to bend, twist, raise your hands for 6-8 weeks. I know someone who took it easy for a GOOD 6 months. Your scar tissue has to grow around the permanent leads (which are the size of dental floss).

I cannot state about this. However, what I can say is the place where they put the temporary leads into my back, the pain is NOTHING compared to the RSD in my hip/knee. I can put up with what's going on with my back, and I will put up with the pain when the tiny device gets placed, because nothing compares to the RSD pain.

You are definitely the only person who can say if you will or not. With a good doctor, one you trust, he/she makes it way more easier to handle. My blood pressure rose so much yesterday that a blood vessel in my eye popped (it looked like someone took a red sharpie and made a thick dot on my eye), even the blood pressure machine showed me to be high. I was extremely stressed and extremely scared all the way into it. By the time I got in the room, and laid on the table, I got to see the x-rays and the doctor started talking to me and made me feel way more calm. It helps.

Hugs, I am going on forever.

Thank you so much, Christine! Gosh, I had no idea that the leads were so SMALL, like "dental floss"!! Thanks also for the l Boston Scientific link--I will read it ASAP, as it probably addresses LOTS of questions!

That is SO ENCOURAGING that you experienced a pain reduction!

Thanks again for everything!:D :hug: :hug:

SO DOG-GONE HAPPY AND EXCITED FOR YA CHRISTINE.. "AND HERE WE GOOOOOOOO.. TAKE IT AWAY GIRLS">>>>:Dancing-Chilli: :Dancing-Chilli: :Dancing-Chilli: :Dancing-Chilli: Great news.. great indeed! Love and Hugs goin' out to ya Sweetie!! I want one now!!:D :hug: :hug: Love, Desi

glad you are feeling such relief with the trial.......
 

i have been away for a long time and finally am ready to share our experience.....

i am happy that you are getting wonderful coverage with your trial........

i see there are so many newbies here, and such young ones ....so sad that so many new cases of rsd are being diagnosed, but this is a wonderful
place to get info, make friends, and just vent and share our stories.welcome to all...

most of you don't know me, but i have been around for several years....since 2000 i believe..........both my husband frank and i have rsd....(i was boo422317)
two people in the same house...........i am as close to remission that i think you can get...with the tunnelled epidural catheter, the
blocks and therapy, i am able to tolerate the pain....not to say i don't hurt like heck, but i am ok.....

however, frank was dealing with horrendous pain...he got reinjured in march of 2006, and had rotator cuff surgery which resulted in his rsd spread.
(he already had it in his right shoulder) he went through a few blocks, an intrathecal catheter, and then the trial stimulator...........he had been at a
10 pain level for over a year each day............they medically retired him june first..........he worked for the sheriff dept....and hates being unable to
be a policeman.........with the scs they won't allow him to work......to much of a liability.............

he had issues with his neck, the doctors said it is short and muscular...........he had the trial, and loved it....sure, no bending, twisting, etc, but the relief
was well worth that........he loved it.....got so much relief...all of his rsd symptoms disappeared.......he even stopped all the medication he had
been taking......he had it in for ten days and did NOT want to let them take it out.....as soon as the trial leads were removed, the pain
started to come back..............

he had to wait almost two months for the permanent scs to be placed........he was miserable during the wait....but he knew the relief would be
well worth it. he had his implant on june 13 2007

he has a medtronics scs. the doc had issues with his neck being so short and muscular, that the literally had to cut his head and move the muscles
out of the way with his fingers.......it was supposed to be placed in his neck....it is way up his head and they used a halo type thing to hold his
head still during the surgery...he had several holes from the pegs they used...
if anyone wants to see some photos i wll send them to you if you pm
me.......i don't want to scare anyone....laffff

his relief is wonderful....his pain was all the way up his neck, shoulder, elbow and forearm and fingers.........he still has some pain in his elbow,
but says he can live with that.........

however, the pain he is going through from the surgery is rather high...........he is back on all the meds, and sleeps alot.....he has overdone
things too, so i am sure that is a big reason for his pain...........he is not to bend, lift, stretch, twist or turn for 8 weeks....well, ya
can't hold him down......i get angry with him for doing too much.............

would he do it all over again? he is still undecided about it....he says it is definatley NOT a cure all....he loves the relief from the scs...he hates the surgery pain........i feel it will get better
after time........they told him that he could feel some pain from the surgery for up to a year...........

he has no trouble with the placement of the battery pack tho........the wires go from his head, down the side of his neck to the right side of his chest...i just tell him he now has man boobs........lafff

i told this story to share his experience........every person is different, some have horror stories, and some have wonderful stories........

here is hoping that you have wonderful stories .......big gentle hugs...............please do not over do anything...................let your body heal.........
claudia