SCS Trial to last for 2 Months - Reflex Sympathetic Dystrophy Message Board

warmnsunny · 01-08-2007, 06:09 AM

There has been so much talk on the board lately about spinal cord stimulators. Is there a huge push on them or is the technology of the stimulator just so good now, that so many people can get pain relief from them. I have to attend two classes and go to a psych evaluation prior to my Dr at my Pain Clinic, doing the trial.
But my situation is a bit different.....I am a single mom, with only the support of my 12 yr old son, i have a couple close friends, but quite honestly, they have been there to drive me to things, but thats about it. Trust me, this is a dead end street with gaining any support. My regular therapist, a chronic pain specialist, recomended i start going to church, just so i could have a community of people for support, well, maybe she is right.....
Anyhow...my question is something i havent read yet here on these wonderful boards.....
i will start by reminding everyone...my rsd started car accident May of 2005 in left shoulder and left arm. Now spread to left neck, left side of head, left ear, and down to left part of upper back, and left lower back and left butt, and left outer leg. i believe it makes me walk in smaller steps because rsd makes nerves bunch up when i make a step so i cannot make big steps....
My pm doc wants my trial of SCS to last at least 2 months.....
i am not happy about that.....no shower, only sponge bath for whole trial....Let me say, since i just started methadone, which i am still only taking 10mg at bedtime, (i cannot stand the dopey feeling and i cant sleep and take care of my son....totally impossible!!)but... I AM ABLE TO TAKE SHOWERS without actually breaking down in sobbing tears....
I know this is all up to me, but i am just wondering if anybody has ever had such a LONG TRIAL TIME for a unit??
I will attend the next class, i want to help myself.....i wish i had someone to help me make these tough decisions....i know this is a tough time for all of us........Please know that we are all here together on this.....

thanks so much for your help and words....
Lorri

daylilyfan · 01-08-2007, 09:16 AM

I have RSD in almost the identical places as you do.. except mine does not go quite into my leg yet... although it is in my right foot. I first had RSD in 2001 in my foot, but it went almost completely away... then I injured my shoulder in 2005, and after RSD attacked the new injury - it came back in my foot. Anyway, in my shoulder, it started in the shoulder and uppermost part of my arm.. traveled across my upper back, up my neck to my jaw line, down the left side of my back to just above my hip.. it's to my waist on the right. I also had it in the front of my shoulder around to the midline of my body and it's starting to move down the front now.

Anyway.. what I wanted to tell you is that I have been told by several doctors to get an SCS... I have been evaluated by 2 doctors that actually put them in. BOTH told me that the best coverage of pain was going to be in the extremities. That it would help my foot but would probably NOT help my back and shoulders much at all. They told me they could put in multiple "leads".... one said they could put leads in to cover left leg, right leg, left arm, right arm etc.. but that the pain control would help arms and legs a lot more than the pain in the trunk of the body. Both said that many people get little or no relief with pain in the trunk of the body. Since 90% of my pain is in the trunk, it did not make sense to me to have one input at this time. Perhaps in the future, if it spreads out into my arms and legs, hands and feet, I will consider it.

The pain I have in my foot is in a small area..about 3 inches square is almost conpletely controled by the calcitonin nasal spray. I can't see having the SCS if this is the only place it is going to help at this time.

If you are not having a lot of pain in the extremities -- you might question the doctor to see if the type of SCS they put in can actually help pain in the trunk of the body.

Both surgeons I saw installed Medtronics devices.

Good luck.
Jules

Edited for clarity...

dee_navymom · 01-08-2007, 10:03 AM

Lori...I am one that has posted alot about SCS lately..so you know my story.
I will tell you I do wish I would of had my trial longer. It would of gave me more time to really test it out. The reason my Dr. wouldn't leave the trial in longer is because of infection. SO be careful. But I do think Dr.'s that leave them longer are giving you more of a chance to see if it really does help your pain. I would think after a week or so if you hate it he will take it out. I wish you the best.

As for for SCS covering the pain in upper body and lower body you will have to have two units. One for the upper body and one for the lower body. My Dr and I just talk about that. One goes in your cervical area and the in your lower back. So you may want to talk to your Dr about that.

Also if you are needed more help after surgery maybe the Dr can ask the I/C for some homehealth sercives or something like that. I don't know much about that. But I read somewhere about it. Take care, Dee

warmnsunny · 01-09-2007, 05:59 AM

Thank you to Dee and Jules so much ....

Jules- I am going to have to question my pm doc about getting relief, my left arm is affected from my elbow up into my shoulder and neck, and if my shoulder and neck wont be helped by the scs, i not sure that will be much help to me. I have not had much pain under my elbow. I have read and heard of more people having more difficult times with their whole arms and hands. thank you so much for all your replies...taking time to share with me....thank you.

ps...what is the calcitonin you speak about for your foot?? When i was in class, there was a woman there that said she had suffered from RSD, but was in remission from "calcium channell blockers" . Now she was there getting a SCS for leg pain.

And Dee-
Yes, he also did mention i would be a candidate for multiple units since one unit could not cover my left leg or lower back. You are probably right about if i hate it....i could have it taken out and another thing, i guess the nurse giving the class did mention about the nurses that you can have if needed...i would need the nurses to help me, i cant very well expect my son to bathe me everyday.

this is just so hard to live with everyday. I am glad i can come here and learn from all of you....so sad....oh one other thing the nurse said in the class i was in....when i mentioned i learn alot about RSD from people on the health board forums on the internet...( internet is such a bad word )....
the nurse said that the internet is filled with people who are home suffering, not out working or are success stories from the SCS......
I tried to explain, but quickly just shut my mouth....she will never understand....until, i hope it does not, happens to her.

thanks again everyone
Lorri

daylilyfan · 01-09-2007, 04:41 PM

Calcitonin is also known as Miacalcin... it is a nasal spray. It is used for osteoporosis. I believe it may be a hormone? I'd have to look it up. There is a lot of info out there on using it for RSD and it's easy to find. My Rheumatologist was not sure WHY it is helpful for RSD, but she knows it works. After she put me on it, I started looking it up and found out there is a lot of info about it. For me, calcitonin really knocks out the "deep down" pain of RSD - but does not do much for the muscle aches or surface pain. Topomax helps the muscle pain and burning, and topical cream and lidoderm patches help the surface pain. Clonadine helps the circulation, coldness and redness. Between all of those, I have pretty good pain relief -- I seldom take any traditional "pain" medication.

The calcium channel blockers -- I think those are the medications traditionally used for high blood pressure. The most common one used-I think- is clonadine. I was on a clonadine patch, which was the highest co-pay per month on my insurance, and I was allergic to the adhiesive. So we tried the pills, and it seems to work just as well. I am "fortunate" that I do have mild high blood pressure, so I can take a higher dose of clonadine. It has helped with the pain, as well as the coldness in my hand. There is also a lot of information about the calcium channel blockers and their use in treating RSD. I used to take a different blood pressure medication, but was switched to clonadine when I saw a pain management doctor who was really familiar with RSD. Some people take a medication called trental also to help open blood vessels - which helps the coldness and redness of the effected extremity.