Reflex Sympathetic Dystrophy (RSD)

by **April63** on Mon Jun 01, 2009 4:47 pm

Hello ~

I'm having a stimulator put in this week and was wondering if anyone else had anything they can share about their experiences? I haven't had a pain shot in 7 weeks and can't hardly walk 1/2 of a block. Swelling is terrible in my leg and I have lost muscle, so it's week and I lose my balance. I'm not looking to be totally pain free (I can't even imagine such a thing), I just want to be able to walk thru a store or walk with my very active family.

Trying not to give up faith!

by **Shianne** on Tue Jun 02, 2009 4:36 pm

I declined the stimulator because I have not had success with any of the other treatments but I am interesed in how it turns out for you. Please let us know. Good luck.

by **April63** on Tue Jun 02, 2009 5:36 pm

Thanks Shianne

I will let you know buy the end of the week.

April

by **lisarsd** on Wed Jun 03, 2009 9:32 pm

Hello

I wish you all the best of luck with your stimultor. I have RSD for the last 17 years and have had 3 stimulators. I will be honest with you, they gave me some quality of life. I was able to have some better days. Although my days were not as good as everyone else;s , for me they were so much better. I was able to smile somewhat, and walk up the stairs .. I was ab le to walk a bit with my family and i did watch a swim meet of my daughter's. I was grateful for the time i had my stimultor in. Sadly, the last one got infected and i have wound up in septic mersa organ failure. It is a rare occurence. I would be willing to do the surgery all over again as i felt it gave me the best quality of life. You will be in my thoughts

Lisa

by **lostandconfused** on Thu Jun 04, 2009 7:33 pm

i had two stimulators and the first one didnt work so they tried another brand and that one worked for the first time i could wear a bra strap on my shoulder , but when i turned it up to where i could feel great it would make my arm and hand have mucsle spam's that it would bring my arm up and fingers would get wired looking so they took it out, said it would cause more harm than good.. i would love if they would have been able to keep it in. good luck and i wish the best for you..

by **kelesmom** on Fri Jun 05, 2009 4:10 pm

I was one of the first to have stimulator put in by a surgeon; laminectomy. At the time, stimulators were only FDA approved for lower body; I also needed upper. Now it has been approved for upper. Where are you having yours put in for AND what type of a MD is doing it; pain specialist, anesthesiologist or a surgeon?
My stimulator kind of works; I think it's probably a mental thing. With RSD, as you know we don't have ANY control and at least with my stimulator I feel like I AM DOING something to help my pain. I wish you good luck!
Piece of advice... during your pre-op with your surgeon/MD BE sure to ask what type of pain meds you will be sent home with following the procedure. I had a surgeon/laminectomy; my MD sent me home with TYLENOL 3!! THAT painful experience tops all of my painful experiences.
Again, good luck! BTW, what brand are you getting? AND where are they placing it?

by **April63** on Fri Jun 05, 2009 11:43 pm

Thanks for all your replies to my post. I had it put in yesterday and so far I'm able to walk better (but have not walked too far) When I woke this morning I was surprised to find my ankle and leg were not as swollen as they have been this past year and 1/2. But you are right Kelesmom, my back is killing me and they did not send me home with any meds for this trial. I have darvacet left from when the accident first happened. Since it is just my left leg that has the RSD, the stim is in my lower back. It's day 1 and if I didn't have this back pain, I would say my pain level is at a 3. and no burning sensation (and just don't touch my lower leg!! lol). They will be taking it out on Monday so I have a feeling my back will be the big pain in this whole trial. The brand is Precision by Boston Scientific. I hope this works because if it doesn't my anesthesiologist said they would have to try to relieve my pain with meds. and I don't do well with them. My neurontin dose is up to 2000 a day and I can't take more then that and expect to be functional.

Thank you all for your kind words,

April

by **kelesmom** on Sat Jun 06, 2009 10:08 pm

Septic Mersa with organ failure? OMG! I am so sorry; that is a horrible condition ON TOP of your RSD. How much can one person take. can I ask you, who was the maker of your stimulator? And where have you had them implanted? I have mine in my "bootie" by Boston Scientific and it hurts all the time. I have lost a lot of weight since they put it in and it sticks out. It's not as big as the competitor I hear about, but just the same I wish I could have it relocated.

[quote="lisarsd"]Hello

I wish you all the best of luck with your stimultor. I have RSD for the last 17 years and have had 3 stimulators. I will be honest with you, they gave me some quality of life. I was able to have some better days. Although my days were not as good as everyone else;s , for me they were so much better. I was able to smile somewhat, and walk up the stairs .. I was ab le to walk a bit with my family and i did watch a swim meet of my daughter's. I was grateful for the time i had my stimultor in. Sadly, the last one got infected and i have wound up in septic mersa organ failure. It is a rare occurence. I would be willing to do the surgery all over again as i felt it gave me the best quality of life. You will be in my thoughts

Lisa[/quote]

by **kelesmom** on Sat Jun 06, 2009 10:16 pm

DRUGS, DRUGS and MORE DRUGS! My surgeon did not give me anything but tylenol 3 after he did a laminectomy on me. I couldn't breath, I couldn't move anything on my person! I've had 14 surgeries in my life and I have never experienced the type of pain as I did when they took some of my spine! Ask where they are going to place the reciever. mine is in my left butt cheek and it hurts like heck. If I sit the wrong way, or getting my bootie back to the high and tight position...FORGET IT. It sticks out and it hurts! They said they could move it to my pelvis but then it would interfere with doing my ab work out (can't have that, now can we?) They also said they could put it in my chest, like a pace maker. That's the one I would have done. I don't care weather people see it or not; I just don't want it to interfere with my day to day or even worse, KEEPING IN SHAPE. Be sure to ask how long it would be before you can start working out, if that is something that you do.
So in summary: DRUGS, LOCATION AND HOW LONG B-4 YOU CAN EXERCISE. Good Luck and let us know how it goes!

by **kelesmom** on Sat Jun 06, 2009 10:24 pm

Hi April! Good to hear that your trial is going well. Mine was very easy. I'm glad to hear that an anesthesiologist is putting it in; that means they WON'T be doing a laminectomy/cutting any of your vertebral bodies. I too have Precision by BS; do you know "where" they are going to "tuck" the receiver? To me that is my painful reminder. Let us know how everything is going; you will be in my thoughts and prayers, April.