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Hi Again Vanessa ,
May the floodgates of heaven pour out so much blessing that you will not have room enough for it. Peace, Roz :) |
Aww... Roz!
Quote:
Have a blessed day! :hug: |
Scs
Hi,
I had my scs put in in 2003. The trial was better than the results after. I went without meds for a little bit, but had to back on. The scs just didn,t work for me. Then 2yrs later, I had a bad fall and one of the leads sliped out and is now sitting on a nerve. The pain from this is just to much. I plan on having it taken care off as soon as possible. If I had to do it all over again, I would have said no. Its been turned off for 2yrs and now have to take pain meds daily. Sue K. |
Hi Sue,
It is very nice to meet you. I am so sorry for what you have had to go thru. Welcome aboard. Roz |
Scs
I have opted out of an SCS even though several docs have recommended it.
Every doctor seems to say something completely different. The last one told me that the only way to stop my RSD from spreading was to get an SCS. He said I would be able to drive myself to a hotel nearby right after the surgery, then drive myself home the next day, 3-1/2 hours. He said I could get the SCS implant on a Friday and return to work on Monday. That they could run 4 leads, one for each extremety to allow for future spread. When I told him that on my RSD support board, people don't return to work for weeks, don't drive right away, are still on medications, have had the SCS CAUSE spread... etc etc... he said it was only because HE did not put it in. Talk about only interested in the $$$$$$$$$ and telling a patient anything. Can you imagine getting a perm. SCS implanted and driving yourself 3-1/2 hours the next day, returning to work 2 days later and not having the leads move? He also said that it was nonsense that a trial would work better than a permenant stim. Said he has never had a trial work better than the perm. SCS. He was in with Stanton-Hicks for years, so I **assumed** he would know what he was doing with RSD. Every question I asked him about RSD was answered with "You need an SCS" I asked about the amount of ketamine in my topical cream... "You need an SCS" I asked about the rash I get "You need an SCS".... grrrrrr I have read several places over the years that the SCS works best for people with RSD in the outer extremities. Since the majority of my pain right now is in my shoulders, neck and back... I just don't think it's worth trying for the risk and cost for the way RSD has been in my body. My feeling is that since the RSD has popped up in new injury areas for me... I will sooner or later get it from falling or something in another area. The SCS would or would not be able to cover the new area. And... since I am not covered by worker's comp - just by my employer's insurance, I would have to pay 20% of the cost... every time something go wrong as well as the first operation... and that's a lot of money for the small chance it will help. Sorry... nothing on the poll for me to click. Jules |
Quack Quack Quack alert! LOLOL
Jules,
Jeez...it sounds like you got a hold of a complete butt head of a doc, that seriously needed to take a psych test! Talk about unrealistic expectations! :rolleyes: OMG! Everything that he told you contradicts everything that I was told about SCS when I got mine (and was going through all of the stuff with it), everything on every scrap of information that I got about SCS before and after surgery, and everything that I have ever heard about it since! First off....they don't just implant 1 lead per affected limb. I think that I had 4 leads for my one affected limb (right leg...only limb affected at the time). The reason for this is incase you DO have a lead or leads break or move or whatever, they can "turn it/them off" and use the others without having to do anything invasive. I know this, because they were messing with ALL of the leads that they had implanted in me, trying to get the pain that the SCS was causing (from the fluid build up....this was before they figured out what was causing the pain) to stop. I ask LOTS of questions....so I asked about that, and they told me. This info came from both my PM doc at the time, and from the Medtronic people that got sent out to deal with my case (LOL..I never will forget that man's name. He was the nicest guy...and was really baffled as to what was going on. His name was Steve Martin! LOL), who were answering all of my questions, just as I was answering all of theirs. We just wanted to figure out what the heck was going on with the thing, you know? Secondly, DRIVING the day of the surgery????? Driving any time less than a week or two post op???? I don't get that!!! Everything that I have ever read or seen has said that driving is one of the things that is most likely to cause lead migration and breakage, and SHOULD NOT be done until there is enough scar tissue built up to be a good anchor for the leads. The whole thing about needing to build up scar tissue and getting the leads anchored as best as they can be is why we aren't supposed to bend, twist, raise our arms up above our head...and the list goes on....for a while after the surgery. Driving...well...you know how the car kinda jerks you around anyways, even when you are a passenger. When you DRIVE, you have to twist your head around to look and see about on coming traffic and what not, which in turn twists your back. This doc just sounds CRAZY!!!!!!!!!! The other thing that I don't get about what he said is about the one unit being about to be used for all four extremities, if needed. I guess that means that if you had had the surgery, you would have had to have a LONGER surgery, and had him cramming the leads around in there and asking you if you felt the stim all the way down to your fingers and toes on each limb? I mean, it is hard enough to get the things placed right for one or two limbs (I wound up having to feel the stim in both my legs, even though I only needed it in the one), let alone all 4? Plus, From what I understand, there would have to be at least two different power sources implanted to power the leads; one for lower body and one for upper. I do admit that it has been a while since I had my SCS and did a lot of research about it (and research I did, both before and after having anything done.....I am just that way; I want to know what something IS before I either have it done, have it put into my body, or in the case of medications, take it. No way am I going to let anyone do anything to me and not have any idea about what is going on...you know? But, I guess I am weird that way....because I don't think that most folks do that. Oh well.....I already know that I am weird! LOLOL). But....I don't think that things have changed that much? I understand that docs need to have a fair amount of ego in order to do the things that they do. They have to believe in themselves and that what they are going to do to the patient will work. They have to believe this while they are digging around in their bodies.....so I understand that to be a doc you HAVE to have a pretty big ego. But.....this guy has a bit too much of one IMHO. Great that he was "in with" Stanton-Hicks...but was HIS name Stanton-Hicks? To make the comment to you that every person that has had a SCS that didn't work or had problems, had that happen because HE Didn't do the surgery....well....I guess that would include anyone that the docs in his group saw too? So, he is better than ANY other RSD doc? Whatever. He needs to get a clue. I agree with you, it sounds like he was after $$$$$ big time. I am very glad that you didn't have surgery done by this guy. I think that you would have been a pretty UNHappy camper if you had. I bet that he is the kind of doc that would have blamed YOU if the SCS had given any troubles at all, or if your trial went better than the perm....or if you still needed any amount of medications after your recovery time from surgery was up. The kind that would have washed his hands of you, and put black marks and red flags all in your medical records. It is a good thing that you didn't fall for his pressure tactics. There is one thing that I have never, ever understood. I wish that there was a doc out there that would come here and explain this to me/us. We all know that it is very possible to have a super great trial, and a not as great perm SCS experience. Some of us have personally been there and experienced that first hand. I think that a great part of the reason that happens is because of the whole lead placement thing. It was stressed to me over and over again, just how important it was to get those leads in "just right", and that it only takes less than a millimeter to change the stim location/intensity/coverage area. I have never ever understood why then, they remove the leads from a GOOD trial? If they get a placement "Just Right" for the trial....why not go with THOSE leads and that placement? Why remove them? Why make us wait the time between trial and perm? Even if they want to do that for some unknown reason (because that was never really explained satisfactorily to me), if we had a GOOD trial, why not anchor those puppies in and use THEM instead of sipping them right on out and trying to get a whole other set back in the same exact place? My old PM doc took xrays of the trial leads to try to help him get the perm ones in the right place. But, xrays can.....dang. I lost the word? Warp? Change? Refract? ARGH! I hate it when this happens! Anyway....you can put the things where it "looks" like they should be according to xray, and still be off by that millimeter or less, or more. If that made any sense? So...why do that do that at all? Does anyone know? Jules, I am very glad that you didn't have this quacky yahoo butt head guy do any SCS surgery to you. I think that you probably would have wound up worse, rather than better. :hug: Jose |
yeah!
Jose...
Yeah, I am glad too! I was SO glad that I was not under worker's comp or something that was MAKING me get it done with him. I have no family or friends able to take me back/forth to this Dr's office.. that's why I would HAVE to take myself. Closer to home, I do have a couple people. They could probably even have the delivery guys from work take me back and forth. I told this guy if I needed one SO badly, I would get it done in Columbus, as that way it would be a LOT easier. He said I would be sorry if I had anyone do it but him, as that it is practically all he does. The Dr. I saw in Columbus said much the same about it as what I read here... that trials often are better than perm, that it works best for one limb involvement - he said no work for at least a month, and no driving for that time. Not even in a car except for Dr. appt. for 3 weeks. He said you don't even move for fear of those leads moving till they start to scar in. I guess you know which doc I would go to if I ever decided to get one done. I originally went to this other guy because he was reported to be so good with RSD because of his association with Stanton-Hicks. Believe me - I practically RAN out of that office. OH--- and he almost did not see me because I refused to do what I believe was break my pain contract with my existing doctor. I get very few vicoden... they don't do me much good, so I don't take them very often. But, my doc has me on a very simple contract for them - just that I won't get any other pain meds from any other doc, or use them other than directed. This guy would not see me at first because I would not sign a pain contract with him, even though I told the nurse I am already under contract, had a copy with me, and said why do I need a contract when I am here for a consultation only and will not be getting medications from this doctor? I told her I was leaving and started to gather my things. She said let me talk to office manager... came back and said I could wait till after I saw the doctor to sign the contract, if he thought it was needed. GEEZ!!! Wasn't trying to hijack this thread. But I do think it's important to realize that there are doctors out there like this. I don't think he heard a single word I said about my pain... he just saw RSD on the chart and $$ in his pocket. I do NOT believe the doctor I saw in Columbus was that way. Maybe because he didn't actually do the surgeries.. just recommended them to his patients - he was a neuro. But he knew more about them than the other doctors I have been to -- inlcuding this one that thinks I can drive home the next day. I am very glad for those of you who have an SCS and that works for you. It just does not seem like the thing for me to try. |
Jose, is totally right in everything that she states in her post. I had my SCS implanted in 1999. My Pain Dr, who did my trial and implantation of the SCS, does a good majority of the training of Drs as to the procedure of implanting an SCS. He does this for Metronics. In fact in the video that they gave me prior to having mine done (so I could see what it was all about), my Dr is in that video.
Jose, it sure sounds like you and I had a quite similar experience with our SCS. Thank You for sharing this with us all. :hug: cjay |
I had an SCS implanted in November '06 for my arms/hands. Now mine is by Advanced Bionics, and my Dr swears by them for the upper extremities, has done hundreds of SCS implants and wouldn't go with any other company for upper body SCS, he says they are the best. For lower body he prefers MedTronics. And he has a really high success rate, even with RSD patients, 85% or better that get successful long-term relief.
I have only one lead for each arm, that may be different between Advanced Bionics and MedTronics. I don't have any limitations on my mobility at all, only restricted activities per Dr are bungee jumping and parachuting (LOL)- because of the hard jerks that could dislodge the leads. I told him he could be pretty sure I wouldn't be remotely interested in either of those activities! I was really restricted the first 6 weeks post-op though - no bending, reaching overhead, lifting, turning my head, etc. I could drive after a week or so, but very carefully and turning my whole upper torso to check behind when backing up.. I'm NOT pain-free, by any means, and didn't expect to be - but my arms and hands are my most painful areas, followed by my neck, upper back and feet. The SCS takes most of my arm pain away, and has dropped my daily pain from a 7-8 to about a 4. That is such a BIG difference! I'm not constantly distracted by pain all the time. I can do things with my family. I can concentrate enough to follow a TV show or read a book. I laugh and smile and enjoy life a lot more. A huge benefit is I'm sleeping much better, and deeper too, I'm dreaming for the first time since I was injured! I recharge the battery about every 12 days or so, it has a lifetime of 9-10 years before replacement, depending on your power usage. My program is very low-power so my Dr says I may go 12 years before I need a new battery. Of course, it's just under 7 months since I had this put in, I have no idea if it will continue to work this well for me, but I have had no problems so far so I continue to think positive. The SCS has just been a very positive experience for me, for which I am extremely grateful as I was running out of effective relief options. Advanced Bionics is also the maker of the cochlear ear implant, I have been very impressed with them overall, very helpful all the way through the process. beth |
I'll do this as a Q and A. I was 16 when I had my SCS implanted, 17 when it was removed, and I'm 24 now.
Did you have a SCS put in? Yes, many years ago. It was only in for about a year. If you were given relief from the SCS how long? It was a kind of off-and-on thing, as I remember. It was great for a while, the leads would move slightly, and I'd need it reprogrammed. Eventually, the doctor I was going to gave up on me (not sure why, I responded really well to some treatment). The new doctor I saw didn't use SCS, didn't have the equipment to reprogram, and essentially wanted it removed. The deal was that if I agreed to have the SCS removed, he would let me have a TEC (which he normally wouldn't do). It was the best I could hope for, so I made the deal. It turned out fairly well for me in the end. Did you still have to take pain meds? I suppose I never really took pain meds. My doctors were always...unhappy with giving me anything stronger than tramadol, which sounds kind of ridiculous. But when I did get stronger pain meds once in a while, I found that they didn't work all that well anyway. With the SCS, I did continue to take the same medications. Any complications after having one put in? Nope, I was lucky! Did the trial work better after the implant? I suppose this means THAN the implant. And in my experience, they both worked the same. Has it affected your mobility in anyway? For the first month or two, I had to be very careful not to bend and twist or anything. It kind of sucked. I wasn't even supposed to lift my arms over my head, like others have said. After that, I guess I just did what I would normally do. My mobility was already very badly effected by the RSD (severe dystonia in my RSD leg), and the SCS didn't help that very much. Sometimes now, I kind of wish that I hadn't had to make that deal. It would have been easier to leave the SCS alone and do a TEC on top of it. But it didn't work out that way, and there's nothing to be done. It makes getting on planes easier without the SCS, I guess! -Betsy |
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