Been A Long Time--Opinions Requested
 

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
:grouphug:

welcome............
 

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

lost mary
 

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.

Brief History for my wife: She was involved in a farm accident in December of 1995. As a result of this accident, she shattered her entire left elbow joint. From this original injury, came the onslaught of viscious neuropathic and orthopedic pain. Marilyn's left upper quadrant was the primary RSD focus. Over the years, the RSD pain has migrated--the migration was not rapid, but after more injuries, a couple of back surgeries, and most recently a tendon repair operation, she is a mess.

So, it's 12 years down the road and her pain is getting worse and more intense as the months pass. She is wearing down like an old alarm clock spring. I can see the fight in her spirit is diminishing. Marilyn takes an anti-epileptic for pain control. That's it. She has tried various other approaches, non which provided satisfactory.

A surgical sympathectomy, directly recommended by Dr. Schwartzman at the time, was done with moderate success. She was relieved of much pain for about 18-24 months. The pain came back as we knew it would. Marilyn said the relief for that time frame was worth it. Yes, the nerves that were severed did grow back, but the pain didn't appear to be any worse than prior to the sympathectomy. BTW--we researched the heck out of the procedure before deciding it was viable for Marilyn.

Marilyn also gets a Bier Block about every 8 or 9 months. Sometimes she can last a year after having the Bier Block. But Marilyn always knew that somewhere down the line, unless a cure was found, and that isn't in the cards yet, she would have to strongly considered an scs or pump situation for herself.

She is not a candidate for any ketamine infusion therapies. None, not outpatient, not inpatient, not Schwartzman's Germany bound procedure, not Harbut's protocol. Her heart reacts very badly to ketamine in any form. So that avenue of hope for Marilyn is shut out--much to my chagrin and hers as well.

I don't want to go on and on. As part of our research we would very much appreciate input for all those who have experience with any type of scs unit. We would also ask those who respond to let us know which manufacturer's unit was installed.

Thank you all for your kind responses so far.

johnthepainter (I am a house painter by trade)

hi i have 2 scs 1 lumbar 1 cervical. the lumbar one is a stage 4 abs and it is amazing (it takes very little alteration to achieve amazing results). the stage 4 was attached to my nerve roots which makes the results far more supirior (imho). my cervical is a stage 2 abs (not sure they even use them any more. it is directly in my prinal column and the results havent been everything i hoped for. i am going to talk to my doc about apgrading my unit...not sure if it is possible but something needs to improve
if you have any scs questions about the procedure or how the remote works let me know

I cannot comment about this procedure but identify with the treatment options not there for your wife. I cannot take meds and had to find another way. I have has great success with a simple free, non med technique which is supported by good science. It works on the principle that the brain changes with chronic pain. The treatment works by retraining the brain that everything is ok. Souns far fetched but it is not. Google "mirro therapy for CRPS".
The US Army is trialling it for veterans with phantom limb pain at present.

In the UK a pharmacuitical company paid hundreds of thousands to put mirror boxes in pain clicnics throught Britain.
This might be worth considering

jeisea
http://www.crps-rsd-a-better-life.blogspot.com

Dear wakegirl and jeisea,

Thank you both for your input on our scs research. Non medical interventions are always sought, but unfortunately, Marilyn has not found a non-medical treatment, protocol, or procedure that has really helped much. We rule nothing out.

When Marilyn has recovered, and hopefully she will, from tendon surgery and rehab, we will begin to narrow down her options for the scs. For now, we are still gathering our thoughts and opinions from others. Thanks to all who have responded thus far.

johnthepainter