[christine1003]

well i had the stimulator instlled thursday and have never in my life had so much pain, i have rsd in my right arm and my mom tells me they kept the blood pressure cuff on that arm going on and off for 4 hours she said my hand was purple i thought my rsd was already bad but this took it to a level i never imagined,
the first incision is the back of my neck and the neurosurgeon told my mom i had problems with my spine but would not elaborate til my appointment sept 2nd
maybe because they had to take out part of my spine makes it hard to use either arm i really hope this works they wont turn it on til my incisions are healed
the box was placed in the fatty part above my right hip i think on this one there are 10 staples and a bunch of stitches my neck has 9 stples and ten stitches
well i have been trying to get here a few days but it just hurt too much

christine

[Payn1nbutt]

Curious as to how far along are you with RSD? I am on year three and was too far along before they diagnosed me for the neurostimulator to do any good. I had only discovered that fact after I went ahead with the implant in April this year, I'm having it removed in a few weeks. It did help lessen my pain for about two months. From my research I found that the earlier on in the disease the better chance of the neurostimulator working. It also helps the younger you are. RSDHope.org has alot of information. On rsds.org there is hospital protocols you can print out on how they should treat you. I was in recently and I asked them not to check my blood pressure so often because its so painful. Whatever you do, do NOT use ice EVER it will make things worse. GOOD LUCK!

[christine1003]

i got it from a shot for a migraine in my arm(phenergan) i have never received my migraine shots in my arm well three months later i had surgery to remove the nedication while it sat there killing cells so i have been diagnosed since march of last year i got it dec 3, 2007 was diagnosed 4 months later.
i did the trial and it worked great hpwever i was not in so much pain with the rsd worse and the 3 incisions hurting especially on my neck
i am going to try to go to the post office today my mom is going to take me so i can get out for a few i tried walmart saturday i was definately not ready for that
i go from the couch to my bed in specific ways i put the pillows but i have to be propped up
thanjs for listening i have been only napping a few hours and there well i woke up and dident see my clock said 1 i thought it said 4am so here i sit drinking my morning coffee lol
have a good day

[Bussey]

Hello Christine,

I'm sorry to hear about the pain that you're in right now! I feel badly for you. I'm flabbergasted, that they would put the blood pressure cuff on your arm that is affected by RSD! I'm hoping that you will receive much needed pain relief, when the stimulator is finally turned on.

If I may ask, what made you decide to have a neurostimulator implanted, rather than a SCS implanted? Did it have anything to do with where your RSD is? I don't have a SCS. I'm simply seeking information.

I sincerely hope that you will feel better very soon! What medication are you using for the pain now?

Take good care of yourself. You will be in my thoughts and prayers!

Bussey

[christine1003]

good morning bussey,
for pain i am on 80 mg of kadian per day 40 in the am 40 at night since the surgery i am on antibiotics for 20 days lortab 10mg 1 or 2 pilles every 4-6 hours, neurontin 800 mg a day 400 night 400 am, zoloft 100 mg day and flexoral 1 every 6 hours
they wont turn on the machine until i heal all the way about 2-3 weeeks and omg did the blood pressure aggrevate my rsd my mom said my arm was purple when i came out of surgery and i thought i had reached the max on pain from rsd but was i ever wrong there are so many more diffferent levels i reached since thursday
i am not sure what it is you are talking about i was told that with classic rsd the stimulator would be best if it does not work the next step is pain pump
i think thats taking some of my bones in my spine on my neck is causeing a whole pain area the neurosurgeon told my mom at my appt we need to talk about my spine i guess it was rough for him to run the lead down my spine but i was in a car accident in january and it messed up my back too
well thanks for responding i go from the bed propped up on pillows to the couch the same way

christine

[Bussey]

Hi again,

You are absolutely right! However, after I read your post, I wanted to know what a neurostimulator was. I looked it up, and I had never seen that device before. I thought there was a difference between what you have, or what you described, and a SCS being implanted. I was told, that the SCS implant, was the classic treatment, when you have reached a certain point, and nothing else seems to help. The SCS implant that I am familiar with, is a rod, that is, I think, somewhere between 10 and 12 inches long, and it is implanted down the middle of your back, alongside the spine. What you described, sounds different. Perhaps, the word neurostimulator, is used to describe both devices. I didn't mean to confuse you. I am not accustomed to calling the SCS implant, a neurostimulator, but that is exactly what it is and does.

Do you have the rod in the middle of your back? If so, that is a SCS implant. However, to better understand what I was alluding to, if you would go to RSDhope.com, which is different from RSDhope.org., I saw a picture of what is also called a neurostimulator. I think I clicked on RSD, in order to get to the page with the picture on it.

Again, sorry about the confusion.

Bussey

[Bussey]

Hi,

I gave you go wrong web page, when I submitted the previous post. If you will go to the page from this post, you will see a picture of what I was talking about.

www.medtronic.com/your-health/crps/therapy/neurostimulators/what is-neurostimulation-therapy/

Bussey

[Bussey]

I'm determined to get this right, lol! When I wrote the page address, I omitted a dash between the words what and is. I should have written what-is.

I must be getting tired! That should do it though. I went to the page using that address myself.

[christine1003]

yes it is the same thing however the fda just approved a smalled version of the "paddle" (bar) it is about 2-3 inches long and they cut out part of my spine to fit it in but my rsd is in my arm so it was placed in my neck with the box above my hip on my right side when they turn it on it will send electrical currents to my arm i guess to tell my brain my arm does not hurt i did a trial where they put it in but taped the box to my outside skin and it was great i only had it for 4 days and then had to turn it back in but now i have the real deal and yes it is from medtronics and they r good i had like 3 reps from medtronics there when i had my surgery

[Bussey]

Good morning Christine,

Thank you for your prompt response! I wasn't aware that they had an updated version of the neurostimulator, which had been FDA approved, so when you wrote about the staples in your neck, it really threw me off! That was why I looked it up, to get an idea of what you were actually talking about. As I said earlier, I felt really bad for you, because it sounded so painful! I do have one question still. Were the doctors that implanted the device, aware of where the RSD was in your body? I still don't understand why they put the blood pressure cuff on the affected arm.

I'm very glad to hear that you are comfortable with the company that made the product, as well as their representatives. That's always a good thing. Please let me know how you are doing, after the device has been turned on.

Obviously, you did not get very much sleep last night either, so I hope that you have a good day, with little to no pain.

Take good care of yourself, and God bless!

Bussey