I turned the SCS off to see how the Ketamine worked. The battery is in my right hip, the incision would be hidden lets say if we were to wear a bathing suit bottom. No it didnt cause it to spread across my back. I had RSD in my right arm only when i had the SCS put in... but 6mths later when i took the artickhoke out of the water the boiling water hit my arm and shoulder which then caused it to spread across my back. I had a stellate block when i got home just to see if that would relieve the pain but it didnt. I didnt know we could even have it around our bra... it seems like the battery would be big and would stick out there. if you were to look at my skin you wouldnt be able to tell that there was a battery there, only by the incision above it. Also, consider which side you sleep on to which side you get your battery put in!!! I didnt think of that and i sleep on my right side

I never thought of that, when i bend you can see the wire on the side of me, it is kind of weird. It doenst hurt, it is kind of just a nuisance because i always did yoga and was flexible and this causes me to have to be a little bit more careful.

With getting the SCS if it gives you relief during the trial, i say go for it. But in the months following, you have to be REALLY careful not to lift heavy things to move them. I think it was worth it. I noticed a HUGE difference about 2-3 monnths after i had it implanted when i noticed id have pain here or there I would just adjust it. The downside is if you were to slouch when it is on hard lets say on a bad day, you get a shocking feeling... it is not painful you just have to move to a different position. It dramatically changed the appearance of the way my arm looked. the color came back down to normal so i didnt look like i had a purple and a normal arm, and also, the hair stopped growing like a gorilla I dont regret getting it. The only thing with the RSD is if you do get hurt, you may be back at square 1 again if it spreads- which is what happened when i got burnt which is why i did the ketamine. But the SCS Is such a great backup no matter what treatment we have I have noticed. I am 20 years old, and went from a college volleyball player, and high school volleyball coach to doing neither because of this. So, with the limitations, i dont think there is anything that is added on top of something we shouldnt do already. Any other questions feel free to ask

Hello.... it's KS back..

Good ole' RSD!!!!! I honestly don't use my SCS... when I have it on it really makes my RSD angry and I have to turn it off..at any level...my RSD did spread after the implant was put in (not sure the implant surgery caused the spread)...AND my trial was a positive..in my eyes the trails are in and out so fast we can't really take it for a good test drive...I am sorry to tell you this... I just keep it charged..My RSD began in my RSD leg..my unit is wired to hit both legs.. RSD is now in both legs..left hip, left arm and (get this) right side of my jaw! My battery is in my right buttox area..same as Hannah..scar is there but hidden by my clothes.. my wires cross over from my hip into my lower spine and go straight up inside my spine to in between my shoulder blades. All internal but I am aware and can feel the wires are there, even tho my Dr. has said they are buried very deep....I have limited movement in my back...Although, I don't use it much..I want to keep it in as it may benefit my better leg in the future...

I am scheduled for Ketamine consult in PA in March..as my Dr. (I live in cold New York) has said my RSD is the most aggressive form he has ever seen.

I can say the surgery wasn't too bad to put it in you just have to be very careful of movements and lifting afterwards... Iam always aware to watch myself now..

I would love to answer any questions I can to help you...

Happy new year!!!KS

I think the reason I gained weight is because I've been using less pain meds (which made me lose weight) because the SCS (s) -- I have 2, cervical and lumbar-- gave me significant pain relief. I don't see how the SCS itself could cause weight loss. Have you had a recent change in meds??

Also, about the "pulling" feeling when you lean over. I experience that occasionally (my battery packs are on my lower right and left side). I notice this phenomena following a day where I've done a lot of walking and the sort. My doctor and I figured out that it's just the muscles in the lower back tightening, causing everything else to pull along when you bend ( I even had the hardest time bending over the sink to wash my face or brush my teeth). A muscle relaxer (I take Skelaxin) fixes that pulling problem right away. I was so glad the implant itself was not to blame!

And just a random guess here, but with your weight loss since your SCS implant, there may be less fatty tissue to cushion the device, making it's existence much more apparent to you

Best of Luck!! Vanna

Hi again, since I was diagnosed and put on lyrica and cymbalta i have gained 12 lbs. I was very active before RSD so i am sure i have gained a couple of lbs because of decrease physical activity but my Dr. said of my meds both lyrica and cymbalta cause wt gain. I'm hoping if i get a scs and down on some meds my wt will go back to normal. Meds?

Hi guys!
I usually hang out in the Peripheral Neuropathy section, but i check here now and then because there is more SCS talk here. First, let me say how sorry i am Re: your battles w/RSD. It is wicked.
Hi Vanna! long time no chat, been meaning to send you a PM to see how you're doing these days!
My SCS trial date is set for Jan 7th and i'm a bit nervous and 'excited' at the same time. Full of questions and i read anything i can get my eyes on.
Regarding where to have the unit implanted....does it take quite awhile to get used to having it the the lower hip/butt? Does it make it difficult to do certain things such as buckling seat belts. I'm right handed. I sleep mostly on my left side.
Are you still able to wear jeans like you did B4?

Please keep giving input guys! You are the 'trailblazers' here! and it's such a drastic thing to have done.
I hope everyone continues to get success....and for the ones that don't quite fit the bill, I pray that technology and new options will come along so that improvements can be made.
We all deserve the best quality of life possible!

Truly Caring
Rae

Rae...

i want to help answer your questions..My SCS implant was done in 9/08...it lives in my left hip/buttox area...I am a right side sleeper...as far as driving..you will be limited from that for a while..as far as reaching, bending, lifing... on and on..you can not do any of that for 6-8 weeks until the leads seed themselves.. Wearing jeans is tough for me even today.... yr.+ later..I wear my daughters jeans as she has the same length but the waist is big on me so not to touch my implant. Now my implant I live much like before except chopping trees and such as my Dr. said... oh and you must watch out for cell phones, ipods and other devicescoming close to your implant...and turn it off while driving and going into stores such as Walmart with their sensors..don't stop..walk fast/// and the airport you will be given a card to stpulate that you have an implant. I can feel the leads in my spine somewhat.. and if I were to tap my self right on my box..it does hurt..I am one of the unsucessful stories but I don't regret having it put in so that it may help with my "good" leg if need be. I am keeping it in.

Let me know if I can help with more.... and good luck..the surgery to put it in really is not bad....... KS

before you go into SX for the final implant make a mark on your butt where the waist seam is on your pants and make sure it doenst hit right there. i can wear jeans i just wear a size bigger so they arent as tight.

After the implant i didnt drive for about 6 weeks, i was lucky i had my mom chauffer me around. I just wore my neck brace in the car ALWAYS for about 3 months afterwards. My dr said just incase of anything he would rather us be safe than sorry for wearing it.

As far as buckling the seatbelt, i have not had any problems-- the only time was when i fell asleep on a road trip and my right side was smashed into the seatbelt and that just flat out hurt because of the incision. yes, airport, they are really good about it. I fly all the time, and i just say i have metal in me and they give you a patdown- VERY LIGHTLY. i actually last time at the airport went through the metal detector and it didnt go off... key is- turn the stimulator OFF. i was so excited because then you dont have to have someone touching you. makes it less painful

Yes i lost weight because i think of going on ketamine, and i got off neurontin!!!! Also, i changed my diet. I dont eat meat or potatoes anymore. I noticed i have more pain with it. I think because the meat and potatoes are an inflammatory food. My mom aunt has MS and she cant eat either because of the inflammation- interesting- Ohh the back spasms, yeah that was my guess but i just wanted to make sure i wasnt the only one I would bend over at the end of the day to wash my face and there it is pulling.

And Vanna, Thank you just the little perks. I think so too, i dont have enough 'cushion' there so I am noticing it more.