considering spinal cord stimulator
 

hi,
my rsd is my right hand/arm so i keep typing to a minimum. I've had 7 or 8 stellate ganglion blocks and most of them were very effective for a week or so, with a good cumulative improvement. but, i recently had an unrelated procedure and despite big signs all around me warning not to touch/cover my arm, i awoke at pain level 10- my arm had been moved and covered with a blanket. since then, i felt like a backslid on the pain relief and burning relief i had been getting. my dr also spread out the time between the blocks, so when i went for the last one, it looked, felt burned as much as it had after just 2-3 blocks. now my dr says that since the pain/burning relief isn't lasting we need to consider spinal cord stim. the dvd looks good, but i want to know if this worked (or didn't) for rsd in arm/hand. is it effective there? more dangerous/complicated? i would love to be able to sit through a movie without pain, and maybe get back to some of the activities i used to love, but i don't know if this would be putting even more restrictions on what i can do and potentially more risk than blocks. any info would be appreciated. thank you

I've been watching this subject, having RSD for more than 26 years.
I find that lots of folks hate the stimulator, and really get much better relief with the pump.
Check into that.

Best of wishes to ya.

pete

asb

it helps for some
 

[ sukadog
My husband has rsd in left arm/hand. He had a scs implant in Dec. He has no regrets. I have seen some on here that it was not successful and others who have had it for many years and love it. My husband is off all his pain meds, however there are limits to what he can do (not lifting over certain weights, not lifting things over his head). He feels it was the best decision for him. The pain meds restricted a lot of things he could do anyways, as he didn't really get great relief from them and they goofed his head. Each person has to decide what they are willing to live with and what gives them the best quality of life. I wish you the best!

Scs
 

Hi Sukadog
I've had the 5-day trial SCS. Mine would be for both legs tho, so I don't know much about the upper units. There are several here who will give good input for you.
The only real negative feedback I've heard is the potential for RSD spread with these stimulators.
Anxious to see what feedback you get
Good Luck

Rae

I have a SCS for my RSD in my right arm and shoulder. I am 20 years old... It helped me alot. I got hurt again and had to get ketamine... Where are you located at? How old are you?

There are pro's and con's to getting it and not getting it. There is always a chance of the RSD spreading when you get it, but for me... I took the chance knowing that it could help me and i could gain so much of my life back and get off medications. Especially feeling at the point of having nowhere to go but there... there are physical limitations, but then again RSD gives you physical limitations so its best we don't do that stuff. Any specific questions? you can pm me if you'd like to ask anything :)

I totally totally second this! I love my SCS. Ive gone through some revisions of the leads, and it has been a journey, but I wouldn't trade it for the world. It makes me function, and it makes me function with way less medication than I would have been on. If you look up some old threads, I wax a bit more poetically on the subject than I am right now. But if you have any questions about it, feel free to ask or pm me.

Hope this helps!
Lynn

I have had my SCS unit, wired for both legs since Sept. 08. Admittably, I don't turn it on as it irritates my RSD and it has caused spread, now RSD in my left shoulder, hip and right side of my jaw...... Everyone feels differently about having their unit. Some positive some negnative... you really just have to decide if it is worth the gamble and follow your feelings... could be a wonderful help to you or it may be a henderence.... Sorry but none of us can give you the exact answer in which route to follow....I've heard the pain pump is a good option...

Wish I had the magic answer for you... please let me know if I can help you...KS:o

Research..
 

This study may be of interest.. I would do alot of research on any new procedure before trying it myself, remember this is just one study, one opinion.

Brush-evoked allodynia predicts outcome of spinal cord stimulation in Complex Regional Pain Syndrome type 1

http://www.europeanjournalpain.com/a...ext#back-bib12

Be well,
Sandra
:hug:

http://www.facebook.com/pages/RSDCRP...2468621?ref=ts

Thank you so much! That's very encouraging and I'm glad it's working for him. Can you tell me a bit about precautions: whether he can go to stores that have theft detector gates? Can you use a microwave at your home? I know these are silly little things compared with the possible benefits; I'm not concerned about giving anything up, but about whether little things can interfere with the device. Thanks again!

Thanks so much for your response! I'm very sorry that it was such a terrible experience on top of the pain and frustration of the original RSD. I hope something helps relieve your pain. Thank you.

Thank you Sandra! I'll definitely read it!

Thanks very much!

I'm old: 43. I'm so sorry this hit you so young, when you've got so many new, wonderful experiences ahead of you. I'm in Cape Coral, Florida and I love the weather we have most of the year; I think it helps. Can you tell me about physical activities and limitations? I used to teach yoga and water aerobics and I'd love to be able to do some of the things I used to do, even if it's just a few minutes a few times a week. Right now I have to keep my arm elevated and supported on pillows just to do a few minutes of walking in place (I feel so ridiculous when I do it and then my pain increases for the next couple of days.) I know it's a pretty silly thing to want, but those are a couple of things I really miss. I'd love to reduce my meds, get more active and actually go out without a lot of planning. The main physical benefit I'm looking for is relief from the burning. Did that get reduced for you? Thanks so much for being open with your experience, and sharing your hope and encouragement.

Hi Lynn,

I'm thrilled and encouraged that this has been such a life-changing, pain-relieving procedure for you and some of the other people who responded to this. I definitely think I need to consider it when it has the possibility of really giving a good part of my sense of self back. Can you please tell me about what kinds of activities you can do (exercise, cooking, going out)? I can't do those things now and would like to do a little, even if it isn't much. Did you get relief from the intense heat/burning? Thank you!

Yes, you can use microwave, and go through detectors. I actually was at the airport last month and went through the security and didnt even beep!!!! wow that was nice i didnt need to get the pat down... the trick is turn the SCS OFF before going through!! :)

I used to be an avid volleyball player and i did yoga everyday. I still do yoga except just in modifications. It will take about 6 months till you can bend alot without having to worry... but now i do normal yoga classes and unless i feel the cord pulling i can pretty much do everything. the only thing I am limited to is alot of poses on my hands (downward dog). My wrist is not strong enough for that... but everything else in yoga I can do. We cant do roller coasters... any sudden jerky movements... and yoga def is not sudden or jerky. My dr actually recommmends pilates and yoga to keep the muscles limber and stretched from spasms. I need to get into the routine of going more often though :) Any other questions?? Also, my incision site is on my right hip... i recommend putting it on the OPPOSITE side that you normally sleep on... yeah... learned the hard way.. :) Any other questions?

I have had an SCS implant for my left foot since 2003. Everyone's results are different, and I was 1000% sold on it when it first went in, but after a short while, the effectiveness ore off. I was told that happens sometimes - that the body "rewires" itself to get past the SCS stimulation and you go back to the same ol same old.

I can tell you, though, that the precautions you asked about are minimal. Microwave ovens are not a problem, nor are regular stores. I always (as a preventive measure) turn off my stimulator when I go shopping, especially at a mall where I will be in-and-out of stores a lot or if I will be going to a jewelry or leather goods store where they have their security cranked up a bit.

I have heard that some people leave theirs turned on while shopping with no problem.

I never allow the airport security to use their wands on the stimulator (or make me walk through the hoop.) I always ask for a hand-screening. The biggest chance of any problem would be damage to the unit, and then trying to get insurance to replace it. (Not to mention another surgery.)

Good luck with your decision.

Mike

I had a scs trial done last month. I have the little monster in my right leg, foot, ankle and now hip. They tried to use two different leads, one for the ankle foot area, and one for my hip. This didn't work for me. I tend to have problems when it comes to anything vibrating on my leg. It really doesn't matter what it is, be it from riding a lawn tractor or driving. So making a long story short it didn't work out for me. I couldn't control the vibrations and it turned my foot and ankle purple. I guess I'm just an odd duck. I hope and pray that you will have a better experience with yours. I would recommend an scs trial for anyone that knows their doctor is competant. I just ran into a very money grubbing one.


krank

I've been reading, and even tho my back is sore from surgery, I just had to add my 2cents worth. As you know, I have had 2 units. It did, for me, cause the rsd to spread. I loved the trial, but never was happy with the perm. THe first one I had, the leads pulled out, and the battery started to rotate and caused a lost of pain. I now have the pain pump, and I'm the happiest I have been since I developed this monster 5 years ago. I had the trial in Dec 1st. in hospital for 5 days. That's when we discovered I'm allergic to Morphine. (good thing to know). They switched me to Diluidad which worked great. I now have the perm unit and it only involved a small cut in my back where they put both the caths and the resivouir. I'm off all oral meds except for percocet which I have for surgical pain. I've had no problems at all and I feel almost like I did before the rsd hit. With the scs I was told I couldn't ride my horses, had to be careful doing barn work, etc. with the pump, I can do almost anything. I do thing bungie jumping is off limits. As there are no leads to pull out I don't have to worry about doing everyday things. for me, everyday things, include riding my horses, running around on the tractor, lifting 50 lbs feed bags and 80 lb bales of hay. I was not going to be able to do any of that with the scs. I'll be riding by summer. yeah..........

Damn.....no rollercoasters !

I know my docs would be appalled to think I've gone on a few since my neck pain issues started, but seriously, the pain was no worse than it is anyhow and those few minutes of sheer joy do something extraordinary for my spirit !

I have not heard anything about microwaves interfering with the unit. He has yet to set off any detectors, we even had to take care of some business at a federal court house and it didn't set it off, he did hand the security guy his card that was issued to him proving he had a device just in case. He has not had his rsd spread at all. He actually turns it off at night and then back on in the morning. Their are several different settings that the scs company rep can program into the device. He also went for the non rechargable unit. With it being in the upper extremity, for some reason it doesn't need to be turned up so high, so the battery is expected to last up to 5 years. The replacement surgery is suppose to be minor. Again, everyone does have to make thier own personal choices, I justed want people to know, that for some it has been a wonderful tool in pain relief.

? for lost mary
 

Lost Mary-
question for you. How did the oral pain meds work compared to the pain pump. My husband went thru all kind of pain meds to finally find diluadid worked the best, however he still had considerable amount of pain, enough that limited a lot of his daily activities. He has since had the scs and is very happy, but just wondering if you knew how the pain pump worked vs the oral pain meds. Our scs rep had mentioned if the scs didn't work after the trail, the pain pump would be the next best option in his opinion.

Thanks

rsdwife
 

I was on Opana 30mg ER. twice a day. The amt of Diluidad that I've started on is giving me the same pain relief as the Opana. THe one advantage is that I'm not suffering from the meds being in any other part of my body. I'm not suffering from feeling foggy headed, and the other organs in my body don't have to keep removing the meds. The ration is abt 1/300 of what you would get in the oral meds. When I go Tue to get the staples out Tue, I'm going to get a small increase, as I want it better then what I had before. I'm so glad that the stim is working for your DH. It worked a little for me, but the buzzing wasn't great and after a short bit the rsd spread and the stim didn't work to help it. I'm glad your rep has mentioned the pump. there isn't any set limit to the meds that can be used. It's 24/7 so there is no fluction of meds. I love mine. I've never felt better or more alive. I can think again, I see the sun come up and I'm excited for what I will be able to do again. I'm horrible at waiting, but I'm being good during recovery so I will heal. I found the recovery from this surgery was sooo much better then the stim. I felt great the day after surgery with this. With the stim, I was in bed crying for over a week...actually for both my stim surgery. So if this doesn't work for him, look at getting the trial for the pump. I know ppl who actually have both and each one does what it needs to do. That is a thought.
Hugs
Mary

This is very encouraging!!!! Thank you!

wow!!! I can't even imagine being able to do those things. I'm so impessed and encouraged! thank you!

Hi Sukadog, I understand how you feel. I started with RSD in left arm and blocks didnt work great so I did the trial SCS and it worked too well-I was unusual, and was getting sensation in my whole body. I thought it was great for my pain but was reluctant because I was very active and afraid of RSD spreading. So I stuck with meds and therapy. Within 6 months my RSD is now considered General CRPS because it has spread to all 4 extremities. My treatment recommendation now is Ketamine coma. I wont do that yet. But I do regret not getting the SCS. I have researched that SCS may work but when they stop working they can cause RSD to spread because your body rejects it. I think I should have gotten it and when it stops working I should have just removed it. As for being worried about not being able to run or stretch, like i thought, well now I have trouble just walking so I am in worse condition. It is difficult to make decisions when you have RSD because you hear 2 sides to all treatments. Who knows maybe my RSD would have spread even with the SCS (then I would thought it was because of getting it). I guess we all have to do reseach and make choices we are comfortable with. Best of Luck with your decision. Keep warm. momof4

bump -another SCS info thread

Considering SCS - TRY CALMARE PAIN THERAPY 1st
 

Hello, I highly recommend trying Calmare Pain Therapy (Scrambler Therapy).

There is a clinic that does this in Florida, so you are lucky as it is new to the U.S. My daughter and two other people we met via networking successfully had the treatment. All 3 were suffering from RSD/CRPS and have been pain free since the treatments. One person had her SCS removed prior to treatment as the SCS wasn't working well. **. We were skeptical at first as it almost sounds too good to be true after all we'd been through, but now consider it a medical breakthrough! No more blocks, no more drugs, no more pain!

Do yourself a favor and look into Calmare. Good luck.

Carol