SCS pros and cons - Reflex Sympathetic Dystrophy Message Board

cblight1 · 09-09-2002, 04:08 PM

Hi everyone. I need a little advise or words of wisdom from other RSD/CRPS sufferers. I have had this hideous disease since about 96-97. It is the same old story. I have had 8 left ankle surgeries including a bone transplant. Original surgeries stemming from bone generated cysts(recurrent). I also have had 3 shoulder surgeries 2 left one right. THe RSD has progressed from my foot and ankle into my shoulder,neck and face. I finally found a PM Clinic that knows about and treats RSD/CRPS. As with almost everyone else I had literally been told the pain was all in my head(a PM Doc In Delaware).

To make a long story less long,I have not been prescribed opioids until recently and have been fearful of the usual addiction potential. Today, they started me on Methadone and they are having me psych. evaluated in consideration of implanting a SCS down the road.
Finally, My questions concern the use of Methadone, others experiences with that and with the SCS. All help would be forever appreciated. Blessings, prayers and love to you all!

Carla B.

piggi777 · 09-16-2002, 07:17 AM

carla
They say if you have chronic pain you can not become addicted to pain killers! I tried methadone and it made me very sick to my stomach? i can only take darvocet and it is very weak??
I'm fighting work-comp for the trial of a scs and have been denied 4 times now!! the reason being that it is to expensive and it is not a cure?? duh no kidding there is no cure!! I will continue to fight! Even though i'm not sure if i really want one.

HAVE A BETTER DAY
SUE

[This message has been edited by moderator2 (edited 10-06-2002).]

cblight1 · 10-06-2002, 03:42 PM

Thanks wyo me for your response. I have taken a while to answer as the methadone mad me so out of it that I could bearly walk or talk sensibly...It did kill the pain but it was also killing my spirit. Tehy have me on oxycotin and oxycodone now and it deals with about 25-35% of the pain but I am now aware of my surroundings and am able to do the basics. I have how ever experienced a profound depressive episode due to the drugs and life. I am sure you can relate. Again, thanks for your answer and suggestion. Peace be with you!
Carla

[This message has been edited by moderator2 (edited 10-06-2002).]

mieko · 10-17-2002, 04:05 AM

Hi cblight:

I have had a scs implant for two years for my left hand & arm and have had about 50% reduction in the severe burning pain. I still have to take morphine and all the other meds along with it , but I'm not always constantly in that same agonizing burning stabbing pain that I was in. The wire which is implanted along the spinal cord has moved and only works when I have my head turned to the left and almost touching my shoulder. Also my RSD has spread to my right arm and my whole left side of my body down to my toes, which goes into tortion twisting convulsion-type episodes and so on Monday I will be having surgery for sure to correct the wire, they will put in a new system that will be grafted into the bone so it can't move and it has a paddle-like end so it has better connection instead of just a wire. They may also implant a bilateral upgrade to cover the arm and the left side of the body, or they may leave this for a later date. The panel of doctors are going to get together and discuss it, I will find out Monday am. I'll be in the hospital for about a week.

Don't give up your fight for your scs it is well worth it, I wouldn't give it up for anything. Even though I can't return to work and I still pretty much stay at home all day or I'm in bed all day resting at least I'm not screaming anymore.

roxy

cblight1 · 10-21-2002, 09:45 AM

Dear Roxy,
Thank you for your reply to my question. YOu will be on the top of my prayer list this week. I hope that the correction will help with your pain relief. I am very thankful that my pain is limited to my left foot and leg and my left shoulder neck and face. I am going to keep my opetions open about the scs and keep trying other options first. I have been told by several people that I should try acupunture for PM. I have to save up for that. Also will be going to Johns Hopkins on the 6th of Nov. to speak with their Psychologists about alternative pain mgmt techniques. I am lucky to be seeing a PM Doc with ties to that Hosp. I wish you the very best Roxy and again I will hold you in my thoughts and prayers!

Carla