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Member
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Join Date: Sep 2006
Location: Way down yonder in the Land of Cotton
Posts: 231
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Member
Join Date: Sep 2006
Location: Way down yonder in the Land of Cotton
Posts: 231
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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!  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.
Jose
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Last edited by Joselita; 05-26-2007 at 10:06 AM.
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