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

Hi Johnthepainter,
Welcome to the group. I had my scs implanted in 2003. It worked for a while and I really liked the way it felt. I had a really bad fall and one of the leads slipped out. They had to shut it off. The lead is sitting on a nerve. I think that if i didn't fall, it would have help me alot. But it never took away the pain to where I could go with out meds. I went without meds for a year but had to go back on. The two together was great. Now I am trying to decide if I want to have the whole thing taken out. Its kind of painful at the site that the lead is on the nerve. If your wife decides to have this done, I hope it works for her. Please tell her I wish her well.

Sue K.

Hi John
 

I half thee SCS but broken sense 1st days. If I turn it on it shockes me liked hart attack. Pain is thru roof. Mine is sown in place so it can't move. Doc said gonna be a big problam gettin it out. I scared of crippln for life or even death. I put if off for 3 yeards now out of pure fear. No doc can tell me that surjerie will be good. Lord help me. I no scare you. But I play Devil's Advocate. My doc for serjery was a pinhead. He shouldn sew it into my spinal but he did. That is my misfortune. Your wifes will be more better. :)

Chin Up!!!! Mark :D

Thanks Wickedgood and Sue K and all who have responded
 

Dear Wicked and SueK--Thanks for your input and comments. To all those who have responded to this thread thus far, a great big thank you as well. Please keep more comments and opinions coming.

johnthepainter

Hi John,
I wanted to welcome you to the group.This is a wonderful group you have found. I had a scs implanted in my right abdomen and the leads put in between my shoulder blades. I was implanted with them on December 17, 2006.I had a temporary one in for three days prior to that to make sure it was going to work first. It was wonderful. It had taken away about 60-70% of my pain.I thought this is the way to go. I am on cymbalta 60mg once aday,trazedone 50mg once aday. My family doctor tried to take me off the cymbalta after being on it for 2 and a half years and I had major withdrawal symtoms. That very same time I went through major muscle spasms non stop. I shut my scs off and it took 15 minutes to a half an hour to get them to stop. To double check I turned it back on and the spasms started up immediately.So I shut it down again and contacted my pain doc. They told me to restart the cymbalta and gave me 90 pills of skelaxin 800mg to try and help with the spasms. I am now out of the skelaxin. They also told me to turn my scs down. I told them if I turn it down it won't do me much good. Well I did as they said and have been back on the cybalta now for just over two months and I have not had much luck at the spasms going away. They told me once I got the cymbalta back in my system that that should help with the spasms. Suprise it has not yet. I turned my scs down from 1.10 to .90, get if I am lucky 30% pain coverage, and still deal with the spasms. I use to run my scs constantly and now run it very little because I can't handle the spasms and the really bad burning sensation down my entire arm. I don't know to this day if the spasms and the burning sensation I am having is related to the scs or not but in my opinion I think it is because when I have it off there are little spasms but a lot of pain. I guess all I can say is each individual is different in how they react to different things so how it reacts with me or anyone else may not be the same as how it reacts with your wife. I am not trying to scare you or discourage you in any way, I am just telling you the experience i am having to this day. Good luck with everything you do and it is good to see a spouse stick by there partners side like you are doing. You don't know how many people wish they had a spouse like you. You sound like a wonderful person. Keep up the good work and make sure to tell your wife she how lucky she is to have someone in her life like you.Keep on smiling and keep your chins up.
If you have any further questions you can contact me by email or if you or your wife just want to talk go ahead and email me.

Tracy

Dear screwballpookie,

Thanks so very much for your current experience with your scs. If anything, Marilyn and I have learned in dealing with her RSD over the past 10 years, it is this disease is perverse. Symptoms, reactions, meds, etc. seem to apply more individually than applicable to a group in the same boat.

We want to examine a range of personal experiences with scs devices in order to surmise how Marilyn may adapt or not adapt to such a unit.

We have much faith in her pain doctor. He has been with her since 1995 and knows the case well. We are indeed fortunate to have such a good man managing Marilyn's situation.

Thanks a lot for your thoughtful and descriptive report on your own specific situation. We both hope your symptoms improve.

johnthepainter

just one more comments re te scs, have the doc and leave it in for the full 14 days to get a better idea of success, but the most important thing about an scs is finding the best installing doc you can get your hands on. my 1st one i was niave and thought that since he did them all the time he must be really good. when i had problems following the procedure everyone else i talked to who had the same procedure had the same problems. on the second implant i went into the dr office at around 10 am because that is when the office usually full (and it was) and i spoke with everyone in there. 99 % said their response was great 1% said it had made things worse. After speaking with the doctor having him answer a list of questions i had prepared i felt pretty comfortable but that 1 problem patien made me causcious. when i went back into the lobby and sat down while i was waiting for a follow up apt a woman i has spoken with earlier in the lobby quietly told me that the man with problems may have had some needed adjustment but on the 2nd day before calling the dr he went down to the local bar got hammered and fell off his chair. i wouldnt have believed her but when the guy fell he refused an ambulance and instead had a friend drive him in and she happened to be there for an appt. the guys friend complained that the office didnt have a tv because he was missing the football game because his "idiot friend couldnt hold his liquor and fell right out of the stool". any concerns i ad about the doc evaporated.

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. :winky:

Reply to Wakegirl and Gamer
 

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.

:grouphug:

To Allen
 

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