My tag is johnthepainter. My wife has been living with RSD since 1995. Mouseminny has been a friend, Keith has been a kind and informative soul. Hoosh has retired and Schwartzman is still researching.

I mention these contact points only as a way to introduce myself and the idea that I have been searching out answers for my dear wife who suffers along with the rest of you with this gorilla called RSD. I, in no way, wish to impose my will or opinion on anyone. I will sometimes ask for advice or information.

I am seeking out the following input from those who have experience with scs units. It has finally come to the point where my wife is seriously considering installing one of these devices. I am actively soliciting any and all input relevant to the topic.

Thank you for time and input.

johnthepainter

Johnthepainter.

Welcome to our group. It is wonderful that you are looking for information to help your wife. My Hubby is there with me also, it just hurts him that he can't make me better.

I'm also planning on getting the scs. i've put it off long enough. I do know that you have to have a trial first to see if it will help. then you get the regular one. I do know that the recovery is very hard, but it should be worth it. if not, they can always take it out.

there are others here that have it, and I know they will be able to give you a lot more information that i can. I see my PMD on the 17th, and will put it into motion.

Mary

it is great to see that you are taking such an active role in your wifes care...........many spouses just feel like we should 'grin and bear it'.

i have rsd but feel that i am in as close to remission as possible, but my husband also suffers with it....

he just had the scs implanted in june............says the jury is still out........his rsd is in his left arm now, but started in his right back in 1998. (long story)

he has great relief with the scs for his shoulder, and hand.......however, they were not able to help the pain in his elbow and forearm.
he had excellent relief with the trial..........but the permanent one is not as effective......altho he would not ever give it up.............

he is now able to use his left arm, the color is normal again, the swelling is gone, and most of all the pain is way down........he is also able to touch his left arm again.........

he still is suffering with the surgery pain tho. saying he feels he traded one pain for another...we just hope that the surgery pain will diminish..(i fear that it has caused his rsd to spread)...and there are many limitations that go along with the scs..........however,he would rather have the limitations than the pain ....no bending, twisting, heavy lifting, etc....no more golf, bowling, softball, skiing, etc....he is still on his medication too.....he says he will probably have to take it for the rest of his life.

his implant is way up his neck and into his head ! we were surprised that they would go so high up, and now his neck is really painful..........

the best thing for you to do is research read and research some more......it is a personal decision .......don't allow anyone to force her to do something she does not want..........there are many many pros and cons for the scs...........

again, you are wonderful to search for answers for her...............

good luck to your wife..............

Claudia,

I was reading your reply and had a couple of questions for you, if it is ok. You said your husband couldn't bend etc. and that he had to give up bowling, skiing, etc. How long is this for? I have horses here at my house, and I clean the stalls, groom them, and I really want to be able to ride again some day. (of course, I don't do it all in one day, but I try. ) any info would be great.
thank you

Mary

Hi John,

Glad you found us! well ok not really under the circumstances and all but there are alot of us on here and we all have been through the trials of RSD and been through different treat ments so we should be able to help you and your wife.

Where does your wife have RSD, if I may ask?? And how long has she had it and how did she get it? Just wondering so we konw something bout her!!

I have 2 stims implnated. I have a spinal cord stim that was implanted in 2003 and i also have a peripheral nerve stim (thats in my RSD leg connected to my sciatic nerve) and had that one done in 2004 or 5.. cant reember with out looking at my card.

With both of them I had to do a week long trial, where they did the inital surgery like putting the electrodes on my spinal cord and having the wires hooked externally to a generator box, and it was for a week. I loved it!!!! it takes time gettng used to the vibrations and jerks if you move the wrong way, but they get better with time.

Both of mine stopped working about 6-7 mos after getting the permanent one put in. and i had 3 revision surgeries on the scs to try and get that to work again but couldnt get it to go past my knee and i have RSD in my foot and ankle (at that ttime)

I would do it all again!! Because with RSD you dont konw what will an dwhat wont work and its all trial ad error. Thats what sucks about RSD!

So if you have specific questions , ask away or PM me if you want. there are a bunch of us that have them and a bunch that also there stims are still working for them after many years!!!

Talk to you soon and tell you wife hi for us and let her know shes not alone!!


Amber

nice to meet ya........my husbands rsd is in his left arm from his neck to his fingertips......when they did the trial, they went in through his back, and thread the leads upwards....
the neurosurgeon wanted to give my husband better coverage higher in his neck so he placed the incision way up in his neck and then put the leads way up in his head.....so he has to be very careful with the leads...............(he liked it much better with the leads in his back)
i will attach some photos to show you his incisions....he has a large muscular neck and that is why he had to go so high up too......

one photo shows the temp scs (the one in his back)
the other ones show his staples from the permanent scs.

Attached Images

	staples from scs implant ouch.JPG (59.7 KB, 219 views)
	healing nicely.JPG (77.8 KB, 224 views)
	one of several PEG holes from surgery.JPG (70.4 KB, 214 views)
	scs tuesday.JPG (68.6 KB, 253 views)

Hi John,

I grew up painting, my whole family were painters lol.

Anyways, I know of another place that has lots of people with spine troubles, and there is alot of information on SCS to be gleened from there. You might want to put a similar post as this one on that forum.

Here is the link

http://brain.hastypastry.net/forums/...play.php?f=251

It is the BT1 forum, but lots of folks keep the spine forum jumping over there.

Dear Wakegirl and Gamer,

Thank you both for taking the time to respond and share your experience. Gamer--I used to belong to the brain pastry site but somehow messed up the registration process and have never managed to get re=registered. I do for a living--interior/exterior etc. etc. If you can think of a way to get me registered at the site you linked i.e. Brain Pastry, please share it with me so I can research this topic more there.

Wakegirl--Your suggestion to question actual patients is an excellent one. My wife has been seeing the same pain doc for years now. He knows her case quite well. I thought it would just naturally follow that he would be the doctor installing the unit if Marilyn decides upon that option. I will have Marilyn do a preview similar to yours and poll patients her pain doctor has done. A very valuable contribution for us. Thanks so much.

johnthepainter

Hey John,

You might try creating another account with a different email account, and dont use the same name user name that you had before. I like the way you are going about researching this. From the pictures it seems it warrants some information gathering.

I was raised in a family of painters, with my grandfather being the local union rep. Not everyone was union, but I did go union. Did all exterior and interior from houses to commercial stuff, even did a few years on the sandblaster. Boy was that fun. Always had the beach in my pockets and hair LOL.

I do hope you and your wife learn all you need to make an informed decision, and most of all that she be happy with the outcome. I know from experience that pain can drive a person to hasty decisions, and it seems you are avoiding that trap. I wish that I could be more help then this.

Dear Allen,

Thanks again for your suggestion on re-upping on the Brain Pastry site. I'll try your suggestion for registration.

I recently took on a partner who is 20 years my junior, full of vim and vigor, and a darn good all around painter. A real plus is his skill at the more artistic endeavors now being done by "house painters." I am an old fashioned guy using old fashioned techniques. Some might say outmoded. My partner is teaching me all kinds of stuff I never knew and has opened up some different areas of income for us both.

Being in a small community, unions are non-existent for the trades people mostly. Professional painters are few and far between. The commercial builders, however, do use Union folks sometimes for the larger projects.

Unfortunately Allen, we are not new to the RSD Puzzle. We research major medical decisions very carefully. We try to be as objective as possible without inventing the wheel all over again. We regard highly the opinions of others and their direct experiences.

When the information is gathered and the options weighed, Marilyn will determine what she believes to be in her best interest. My role is to provide the information for her to consider. Of course, she will speak to others personally about the SCS experience if and when the time draws near to install such a unit.

Thanks again for your input. Perhaps you can forward your personal email address and we can talk painting stuff too. It would bore the heck out of most.

johnthepainter