First I must aplogize to Bobber..as my PM was deleted by mistake by MOI.... but since I have your attention here I must address my SCS unit and my results..I think that is what you were asking....Yes, I did have my unit, SCS put in 9/08. After much anticipation and waiting for the smaller size unit to be manufactured.. Unfortunately, I can not use it as my RSD gets really angry when it is on...Possible spread having it put in?? Possibly as I now have had alot of spread..My trial went well but I now wished I had a longer period of time between the post op. pain of putting the trial in and my permenant unit..I don't not regret having it in and that baby is staying..it lives in my left buttox area and leads up my spine , internally to between my shoulder blades.. no slippage to my knowledge..and it is wired for my other leg too..so I hope one day I can use it for my "good" leg as the RSD is there now too.... I sure I helped you but plz.. yourself or anyone..let me know how I can help you with your thoughts of a SCS....Keep in mind everyone is different so my story may not at all be what you may experience..as you may have good results..that I wish I had the answer to but as we know RSD is nasty....

Take care,...KS

Thank you KS
One dr recently last week,wants to install A SCS unit on me,I mentioned the posssiblity of a spread,He was all Pro for it and no cons,,I also mentionedthe possibility of identifying whether I was in SIP,or SMP,,would mke a difference, and he stated that in medicine now days with RSD patients,they didnt no longer go by that,,Its everyone is in the same group idea,,which after listening to the people on this forum and their insight and others who had experince with a SCS,I didnt agree with him on that part of his input,,Plus, the success rate was low or nill . Im still open to the idea, but the % rate is low,when you actually talk to other patients who have one. I dont know if a TENS unit is a gage to whether a person is in SMP or SIP,,because that unit helps some,,but it inflamed me,,maybe its because im in RSDII causagia..that is the only corraltion that i can see,,,I really appreciate your insight and replies to you KS and evryone else,,I just dont want to make a vast mistake,,,,any other input on this matter is well appreciated,,,thank you ,,,,,,,Bobber P.S your concern about the installation may have caused the spread,,,,my take on it is any trauma to the body can and will induce spread,,but my opion is leaning more on the unit be turned on,thats causeing the spread....

Hello bobber..

My take as well is the use/vibration of the unit is when my RSD gets really anger at me..I can not wait ti turn it off and usually on days when I do give it the scouts try..I pay that night with aweful pain.... Seems as many things..the SCS were "pushed" or recommended by many physcians as way to go... but I have since heard, since mine was installed that the direction of poush is no longer the SCS but more the Ketamnie... maybe it's me but it seems to be more of the popular choice..almost a higher level in pain intervention....

Have a wonderful nite and again..Let me know if I can help answer more questions...

KS

Hi Bobber,
My personal opinion is: it's important before any procedure to be as relaxed as possible. I've seen questionairres on this board that have asked, before our surgery-injury-etc were we stressed about something? I know in my case I was. Some Drs. will not do a surgical procedure if we are in an emotional mess of some kind. Even at the dentist-my dentist did some research and gives me antibiocs the day of procedure. Also I take the nitrous oxide mask to relax me. It makes sense to me. Even before major surgery, my Dr. asked me if I would like valium or something to relax. I wasn't nervous so didn't take it. But now I do.
I got RSD right after breast biopsy and was going thru a terrible death of a friend and caring for them.
I know you don't take much meds, but my dr. gives me lorazepam twice a day. It calms my system down and is just as important as viodin for me.
Do you sleep? I was on ambien cr and it quit working, so my Dr. was doing a 200 person study and put me in the study. It was for fibromyalgia-has been around a long time for bipolar, but pharmaceutical company looking at it for broader use. It helped a lot and I slept 10 hours. I take 300mg. have been taking it 4-5 months. The restorative sleep has caused less pain, so I've gone down from 6 mg of vicodin a day to 4 mg. and from 6 mg of lorazepam to 4 mg. I'm on 2 blood pressure meds and when I loose weight, am sure I can reduce that. A couple of years ago, I asked about going off neuotin, and gradually went off, and have no bad symptoms like before.
He is a neurologist, pharmacologist, and psychiatrist. Wonderful, compassionate man. Just built two clinics and HBOT in each of them. I'm saving for going thru the HBOT-next spring-summer.
I hope any of this might be of help for you. I always enjoy your posts. Your Arizona bud,loretta with soft hugs

Thanks KS
I think your right,,The vibration from the TENS unit aggravated mine,,not right away but a few hrs later after i had turned it off,,,so i waited until the pain calmed down as well as the flare and fire engine reddness that it produced,the i tryed it the next day and had the same result,,I have found That RSD doesnt like vibration at all,,at least in my case,,your last post triggered a memorey,,When I first felt anything to suggest that I had a serious problem,was I was riding my wifes V-Twin and the vibration on my right heel,went nutsso,,,before that day,,only dorso flexing the ankle[which longated the trapped nerve] would aggarvated it along with a hot bath,makes it sting,,right where the nerve is trapped.......Thats another reason why im leary of the SCS,,but im intriggedwith any idea to manage this disease and to hopefully get a remmission....Bobber

Hi Loretta
If you look at the time lines,When you posted ,,I was posting at the same time answering KS,,,,I want to persoanl thank you for your concern for everyone on this forum, and your wisdom and empathy towards others,,you as well are a treaasure from the Lord,,,As for sleep,i do sleep pretty good, I really need to back off of caffeeine,I think it increases my pain levels,,But i noticed when my liver and gallbladder 2 months ago were inflammed,I was forced[if I wanted to live,,to go cold turkey off everything,[percocet,Xanax] and between being physically ill from the liver and gallbladder ,,I was withdrawing from the meds inwhich make you even sicker,i was bedridden for 4 weeks,,but I also [because of the gallbladder and liver issues] had to eat plain rice,frozen vegtables only,,,,,i was misable,,but i had 2 weeks of no pain at all,,,But now my diet isnt as good and im in pain again,,,Im also more mobile when i can,,what a vicious cycle,,,,,Thank you all for your support,and I do appreciate reading everyones posts,,,,may you have a pain free nite,,,,,bobber

Wez gotz a great family here!!!!... don't we????????

Goodnite Johnboy

My name is Rae
I havn't been on here for several days and i feel a bit guilty of that, as i've wanted to be a better support to all the ones here who have given me so much support.
KS, Vanna, Mary, and so many others here - wonderful people!

I'm kinda in the same boat you are in Re: SCS. I did the trial, seemed to do what it's supposed to do and so now I'm in the
"in-between" time of getting the permanent.
I have many questions, doubts, etc same as you are facing. It does so much good to just hear other's testimonies, and take note of what they've been thru and all the good suggestions they pass on.
So, in that regard, it's kinda a 'good' thing that there is this
6 wk (or so) waiting period.
I'll need to read back thru some of your previous posts to see exactly what your battle is, but just know you are most certainly NOT alone.
Feel free to PM me with any Q's and we can compare notes or whatever. The more people we are in touch with, the better.
So, just wanted to make myself available to you and perhaps you will have input that will help me (and others!)

And for the rest of this wonderful 'Walton Family'
I see the frustrations you are facing and my prayers are with you all......you've been there for me in my greatest times of need. We are in this together.
Truly Caring
Rae

Rae...

What are your reservations concerning moving forward with the permenant SCS unit??? Ask away...

KS