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Seeking advice on SCS Trial
So, anyone who can "chime in" please do.
I'm set for trial on July 8th. I do also have another follow up with Dr. & St. Judes Rep. before trial so that'll be my last chance for questions. I've been reading about the acronym no "blast" but now I'm wondering on the details. For example: Bending - brushing your teeth over bathroom sink? Lifting: what limits? Stretching - can you reach into say a regular type washer & dryer? Twisting - How do you make sure you don't do that in your sleep and how do you get out of bed. Getting and out of vehicle? How about having your back against a seat or chair? Mine will be placed in lower back and then go all the way up to shoulder area as my CRPS/RSD in in my left hand and arm. Can you wrap the site in cling wrap and tape it up and quickly "shower"? I'm really scared to do this and I've read a lot of everyone else's stories here. Along a different thread I'm also dreading feeling like a "burden". |
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check out the subform on scs and pain pumps.
http://neurotalk.psychcentral.com/forum118.html They are a great group of people and would be glad to answer your questions. I personally had a trial and didn't have a good experience at all. But a lot of people do well. Good Luck! |
Hi Az-Di,
A quick FYI for you in this waiting time - there are two non-invasive treatments that I know of that people on RSD discussion boards have had some success with; you might want to give a quick look at those before your SCS surgery, in case they work for you. My daughter was at the same point you were at - scheduling her SCS - then we heard about the Calmare treatment and tried it and she went into remission. The clinic in Mesa (close to both of us) will not charge for the first few treatments if they don't work. Nothing to lose but a little time! We might even end up sitting next to each other in the waiting room - after 3 months of remission, she just started coming out of remission today (normal and expected) and we will be going there for booster treatments. Also, a mom on another board had really good results for her daughter with H-Bot treatments (Hyperbaric Oxygen Therapy). Both of these treatments are non-invasive, and won't interfere with the SCS if you need to go ahead with that. As far as the burden feeling - there is still SO much that you can give to others! My middle son was born without legs (he has caudal regression syndrome), and as he got older, it was hard for him to sit by and watch my strong oldest son help people out by lifting heavy boxes and things for them. One day, I told him that although his brother could help people out by lifting boxes, he could help people out by lifting their spirits. That really resonated with him, and he is so sweet and sensitive and good at encouraging people now. Yes, you're going to be somewhat of a burden physically, but you can do a lot for people's hearts and spirits in those times when you're feeling a little better, and that's really important! Best of luck whichever treatment you decide to go with, and please keep us informed! |
I didn't have any problems with my first trial, for my thoracic stim- for rsd of right leg now w/left leg spread. I had a great trial. Great pain relief, I did not have the pain everyone speaks of. I had a little discomfort the first day or two. I went down on meds, could walk well and unassisted for the first time since 2011. When they pulled it, all symptoms came back with a vengeance. Permanent implanted. Had a revision due to a fall. Starting to have some degenerative issues in that area. I think due tithe surgeries and I believe, unfortunately, spread. :( anyhow, the stim. Works great still and covers the pain a lot of the time. It does not do a lot for the swelling and color changes. I have a St. Jude also. I have a wonderful rep, and we occasionally tweak. I have had some leg issues lately that we can't tell if it is rsd spread or another problem. I was walking almost perfectly until April of this year when I had seizure. That's another story.
Timeline for Thoracic Stim St. Jude Eon Trial June 2012 Implant July 2012 T8 Fell September 2012 Revision October 2012-moved down to T9 great coverage. Cervical Stimulator- this one was a little dicier. I also have rsd in both hands. It has always been more positional and the blast was always more difficult due to your neck almost always moving!! Anyway, I had the trial and the permanent done a week apart. I also had a second surgery on this one due to the battery never scarring in properly. This one's coverage is all right. Not as good as the leg one, but still nowhere near as positional as I thought. Here is the timeline for this one. Cervical stim st. Jude eon Trial Feb 27-March 6 2013 Permanent implant march 13, 2013 C2 Battery surgery June 12, 2013 My experiences have both been good. I have great relationships with my doctor (pain), surgeon, and rep for St. Jude. Some things I would keep in mind for trial 1. You can't bathe-I had my hair washed at Walmart. That was nice. 2. I used those cloths and baby wipes. 3. I took really good notes about pain, how much activity I could do, if I could decrease meds 4. If you aren't feeling coverage where you need it, call the rep. My cervical lead slipped and I had to have a reprogram for my cervical trial. 5. Don't be afraid to rest. I was almost overdoing due to feeling less pain. 6. Be careful about twisting and lifting. Those leads are not very secure. As I said, I slipped one of mine. I can give you some tips for the perm also. I have two and can still tell the tale. I hope things go well!! Lots of luck. If you have questions, feel free to message me!! TK :hug: |
That walmart idea is great! Also, it's so true - you have to be careful about overdoing it when your pain lessens. It's so tempting! There's just so much that we can't do, then when we're feeling better, we want to do everything!!
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could be better than you think
I also have a scs from St. Jude. I had a really great rep that was always available for my calls to answer questions and concerns. I could tell you the pain was minor at first, but it hurt like the devil the first couple of days. Don't be afraid to ask questions or voice concerns. My trial went so well that I had my unit installed last October. Thanks to how well it worked for me I can now work full time. I rarely have to take time off due to the level of pain. Just remember what works for one may not work for someone else, but if you do have an intense level of pain it's so worth doing the trial. I wish all of us the best of luck!
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Hi Az Di,
I'm hijacking your thread for a SCS related question, because it looks like a few of the SCS "success stories" have posted here......or perhaps you know the answer yourself from the research that you've done. I've heard that the principle of the SCS is like an implanted TEN's unit. When I'm having more mild to moderate pain, I might have it set on 3 or 4, turning it up further is too strong for me then. When my pain is severe, I crank that baby up to 10 AND up the meds AND use ice AND have to lay down. How much "stim" do they set a SCS for, for each person ? I don't mean, "Do they set mine at an X and your's at a Y ?" I mean, "Is it set to manage my 4 to 6 pain or my 8 to 10 pain ?" Does it manage just baseline pain or can it also stim through a typical RSD pt's daily exacerbations that come with activity ? The SCS is the one possible treatment for RSD that really scares me because I've heard so many horror stories and no long term success stories (not saying they don't exist, just that I haven't heard about them). Hopefully, im4 and tkay, will continue to do well and become long term success stories...... And teach me to rethink my SCS negativeness. I wish you luck with your trial and whatever long term treatment you have. I would just proceed cautiously. |
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Actually, yes finz. I have programs for moderate pain, programs for severe pain, and one for "absolutely unbearable" pain. I also have three cycling programs for my thoracic (leg) stimulator. I choose one for sleeping, one for good days, bad days, etc. I know it probably hasn't been long enough to consider me a success story, but it has helped me so much. I am being tested for other neuro disorders at the moment. My cervical stim is the same way, but the parameters are so much smaller that it's hard to adjust sometimes. I've had some issues, but no horror stories. I fall a lot, and it hasn't dislodged a lead since October. I've "learned" to fall sadly. Anyway, hope this helps. TK :) |
Do you have a remote control that resets it or changes the programs ?
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I am concerned that your are using ice. Are you using it on RSD/CRPS areas? It is known that ice is bad for RSD/CRPS and can accelerate it and cause spread. Nanc :hug: |
Yep everything Nanc said is correct. My thoracic stim has 9 programs and my cervical has 8. I know there are a lot of negative feelings about them. I love mine. My life wouldn't be half as good without them.
Right now I'm exhibiting almost every symptom of ms, but not able to have MRIs. So, they are doing myelograms on Wednesday and withdrawing spinal fluid. I hope hope hope it's just an rsd flare but I have been getting awful spasms. I also have been having awful bladder issues. I know these are also symptoms of systemic rsd. My drs. can't make up their minds. Until my seizure in April, I was walking unassisted except a cane for balance long distance. (3-5 miles) anyway, I hope these more positive stories will help. The cervical has helped my hand strength so much. Without it, I couldnt push myself in the wheelchair. They are not perfect, and o not provide 100% relief, but they are a great tool in managing my pain. Hope this helps you!! TK :hug: |
Success with a SCS implant
I have had a SCS for about 3 years now. I have had no issues since the implant. The testing for the SCS is pretty much as people say - atleast for me. I was sore but the sensitivity, burning pain was gone. I had the test implant for 5 days. No showering which sucked. I had my husband help me with my hair. I have RSD in my arms so my leads are very high - by my neck so I'm set very low because of the movement in the neck, etc. I started out with it at .65 - yes that's point 65. I'm now about to a .90 since my pain has increased.
I definitely encourage you to do the trial. If your sensitivity, etc is better, I would seriously encourage you to consider it. It's not a total solution to RSD though. If you're looking for that, you won't find it with the stimulator or with meds. There isn't a total solution to chronic pain. But, for me it has changed my life for the better. Good luck. |
AZ -Di - how did your trial go?
Hello AZ-Di,
I just read in another thread that you have already finished your trial.. wow that was quick; didn't you just get it on the 8th? How did it work out for you? Wanted to let you know that I just got my permanent implant (Medtronic Adaptive Stim) on the same day you started your trial. I am extremely happy with it so far! On day 2 - I went out on two therapy walks, both were just barely under a mile long. Day three the first outing was 1 mile and the second was just over 2 miles with a smile from ear to ear.. I am one happy girl! I noticed that after my first day of walking this really improved the surgical pain I was feeling from the implant, both in spine and where the battery sits in my buttock.. thankfully. The permanent offers many more settings for both the intensity of the stim and the pulse sensation which makes it easier to find a program that works for different activities. The recovery so far has not been bad at all - Yes, it is painful but surgical pain not CRPS pain and so much more tolerable. I have been able to sleep laying on both sides and on my back without any more pain than the initial discomfort of trying to get situated with and injury. Though I was awake for the surgery itself, I have no recollection of it. One tip for anyone contemplating SCS that has a small frame please take the time to discuss and really think about where the battery (IPG) will be placed. I am 5'6" at 116# so I was concerned that it may protrude. Before CRPS II, I was an avid snow skier, mountain climber etc., and often wore a backpack to carry extra gear, tools etc., Because I am trying to stay positive despite this horrid disease, in my mind the point of the SCS is so that I can enjoy at least some of those activities again someday, even if at a slower pace or easier route. So.. when I arrived for surgery I had my favorite backpack in hand so that my surgeon could make sure that where he placed the battery (IPG) that my backpack would not rub on it if it protruded even a little. He laughed and said "this was a first - keep that attitude and CRPS won't beat you". He encouraged me to stay positive and do my best to find ways to enjoy the activities I love. I am super glad I took the time to think and plan for my future (thanks to the many folks who posted experiences on this forum) because it does appear that even when the swelling goes down most of my components will protrude some. Regarding spread - I have not experienced spread from the SCS implant. My previous experience with spread after surgery was that it was obvious within 12-24 hours that it had spread. This may be different for everyone but, at least for me, given I am entering day 4 without signs of spread, I am hopeful and positive that this did not occur with this surgery. YIPPEE YAHOO. Wishing you a speedy recovery and clarity with your decisions going forward, Tessa |
Thanks for advice!
Yes, my trial was pretty quick I guess, It was placed on Monday a.m. and removed Thursday at 4 p.m. I had 3 days of intense physical therapy during that time and since I had the SCS my doctor told the therapist to "go for it and not hold back" and boy did they ever torture me:( My back was very sore during that time but my neck area where the electrodes ended up was not. In fact my back is still sore. Wow! I'm glad all is going well with the permanent for you! Maybe the battery will settle in and not protrude. Are you having any swelling there? Is it easy to control the stimulation or do you keep it pretty steady? How restricted are your movements while that heals? I'll be interested in your recovery and experiences! Thanks, Di |
Hey AZ-Di,
Your welcome! Yes, things are still doing very well now 5 post implant - it is buzzing along doing everything it was meant to do. It is very easy to control the stimulation and adjust it as needed. I do tend to change the programming depending on what I am doing and where my pain is worst at any given time. I don't want over stimulation so I really worked with my surgeon and the rep to make it as precise as possible. The amount of programs and voltage settings it much greater with the permanent as compared to the trial stim. Yes, I too hope the battery settles in and doesn't protrude but I will work around that if it does not - I was forewarned and went ahead knowing that it could pose an annoyance. Yes, I do have swelling (seroma formation) at the battery site, at the leads and along the wires and oddly at the base of my spine. The doctors did have me come in for some blood tests yesterday due to the amount of fluid buildup but, all is clear thankfully. For now they are watching it closely and keeping compression wrap on it. I would cry if it had to be removed so, I am praying it is resolves without issue. I am restricted from lifting over 5#'s, reaching above shoulder height, bending & twisting. But, I can walk as much as I am able, so that is how I am staying sane right now :) My dogs sure love it!! I'll try to keep you updated as things continue to heal - if you have any questions at all please don't hesitate to ask. Glad the trial worked well for you and that you were able to do therapy while taking advantage of this amazing technology!! May today bring you joy, Tessa |
I am also having fluid build up problems at my left battery site. I'm 5'6 maybe a little more and weigh around 112-115, depending on scale. When I got my other one, I weighed about 150. I did not have the fluid and scarring in problems. NOW it Sticks out, but doesn't bother me near as much as the left. I hope it will settle. We are watching it closely. It's been a pain in the, well you know lol. I got my cervical implant in March, so I've been battling mine since then. I refuse to take it out.
Did the temp help your pain enough to get the permanent Azdi? TK |
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I just don't want to rush into it if I can buy some time. :confused: |
I sure hope that Calmare works as well for you as it did for my daughter!! But please do share your results, whichever way it goes, because information on the various treatments is helpful to others.
Another non-invasive treatment that I've heard work for some is H-Bot. There's a new member here whose daughter did well with it. |
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