I just saw a new doctor for a consult. He is the 4th doctor to tell me I need an SCS.

This one worked for many years with Stanton Hicks, and just parted the Clev. Clinic last year. He has implanted "hundreds" of SCS.

I have 3 main questions.

1)He told me that the main reason he recommends the SCS for me is that it will stop my spreading. (if the thing works for me, that is) This is the first I have heard that an SCS will stop spreading.

If you have an SCS that you use - did it stop spreading for you?

2) Also - this was most curious.... I told him that missing any work, past 1 week vacation time, would be a great hardship for me, and that means I need to drive. He said it would be no problem for me to drive within 2-3 days of trial or final implant.

Everything I have read is that people are told no driving for 4-6 weeks.

3) He said it should stop my need for taking medications, etc. by stopping all or nearly all my pain. He said that if the trial works, the implant should work. I said I have read of many people that have had the final one not work. He said that depends on the skill of the doctor... be sure to have one who has done hundreds of them and your outcome will be better.
Anyway, I am curious as to how the pain will be gone? The Medtronics site says it will be replaced with tingling simiar to hitting your funny bone. Well, I don't think hitting my funny bone is very pleasant. I've had times when I had to much neurontin and my hands and feet tingled terribly. I hated that. Is that what I would have? Their site also says it works better for arm and leg pain, but mine is mostly in shoulders, upper back, and now traveling down my entire back. I plan to see my regular pain doctor and my neurologist about this again before doing anything. The whole idea just scares me to death.

However, the RSD was pretty stable for the first year. Now, it is moving at what I think is fairly rapid rate. Showing up in my left big toe, for no reason, and this travel down my back is coming pretty fast. About 6" this week. Stopping the spread would be the main reason I would do it.

My mind is really whirling.

Hi,
I am so sorry to hear that you are having such difficulties. It's very frustrating. What has your treatment plan been for the past year? Have you had series of Blocks, Epidurals etc? Are they just not working now?

Moving to a SCS is a big step. And I can understand why your mind is whirling. As what you want is relief and your doctor paints a pretty good picture that the SCS is going to be the answer to all your problems. If all that these 4 doctors said to you was true we'd all have SCS's. There would be no more suffering from RSD.

I've never heard that SCS stops RSD from spreading.

There are people who have had SCS that have to continue to take meds orally.

With the trial, they tell you to be very careful so that you do not jar the leads. There is a whole list of things that you can't do. If it were me? I would want to run, jump and play and really test that bugga out to see if it really works! But as far as Medtronics is concerned, they want you to sit calmly, with your legs crossed and watch TV for the whole time! No bending, squating, twisting, the list goes on and on.

I hope some of the people w/ SCS's will share their experiences with you.

Please do not be intimidated by Doctors. Remember it's your body. It's the only one you have.

I have had the ANS Genesis (non-rechargeable) and now have the ANS Eon (re-chargeable),

I only had RSD in my right arm - until I had the trial for the SCS - that is when it spread to the left arm.

I had a lead move and was using high settings on the SCS so I had revision surgery. They could not get IV's in my arms so they tried (several attempts) to get IV's in my feet - I ended up with a central line because they could not get IV's in my feet either, but that is when the RSD spread to my feet and legs.

I have pretty much stayed on the same meds before and after the SCS with adjustments (some higher).

I have been told that I have the most severe form of RSD though that very resistant to treatment. So you could be totally different.

I have had a couple stellate blocks, which were good blocks (hand warmed etc) but no pain relief. No epidural or other infusions tried. I am not on "pain" meds per se... but do take topomax, baclofen, calcitonin, and clonadine. With all of those, my pain is mostly reduced to a feeling of very severely strained muscles. Although I am fairly misesrable, it is tolerable. I have not had at any time the burning or severe skin sensitivity. Just recently, I developed a small spot on my good foot, on a toe, that feels like someone holding a burnt out match to the skin, so that might be the start of burning.

I am able to do most things. I work at a computer sit down job, and can drive, although longer than half an hour gets to me. I don't have the strength I used to have, so can't open jars etc... but I have worked hard at therapy to be able to still putter in the flower garden, etc... even though it is a struggle, I fight to be able to keep doing these things and not stop.

So, for me, as I say, the main reason to do the SCS would be to stop spread, and in the back of my mind, it seems to me I have read about people having spread after the SCS. This doctor seemed to want to talk about nothing BUT the SCS. I am just not sure I am bad enough for that.

Say it does spread through out my body in the way it is right now - I could probably continue to live pretty much as I am now. At least I hope so.

jllenrad - your experience is just what type of thing that scares me about this. I am getting by "ok" as is. What if I went for this and things happened like it did for you? I would be much worse off. This guy said he has never had anyone get spread from having an SCS implanted - yet I know I have read it over and over.

However, RSD will soon cover my entire back.. so on the other hand, it won't make much difference, I suppose... but most of my other 3 limbs remain pain free - spots in them here and there are not, but most is ok ... for now.

It just feels like an SCS would be rocking the boat on a fairly calm sea for me. Sure, the idea of no meds and no pain is like dangling a carrot in front of a horse - but......????

Morning,

It just seems to me that this doc seem fishy to me!! my doc has done lots of them too and everything you siad is the total oposite in realilty.

First Question,
Stop it from spreading?? good lord i wish it did!! I had my SCS implanted in Feb of 2003 about 7 mos after the diagnosis of RSD, and the trial seemed to work, but once he did the perm implnat it stopped working after about 5 mos or less, so i had to have 3 revision surgeries. yes it feels like tingling, but not like hitting your funny bone, but it does take some getting used to and like if you arch your back to strech.. i always like like a jolt but you get used to it! and know what will give you that jolt and what wont! Also another q for you or to ask your doc. We all had a trial with the scs, and mine was 2 weeks of having the trial in and hanging out before the perm was put in. And then after the 2 weeks i was able to get the perm put in (in a day surgery) , but also that you have many many restrictions for at leats 6 weeeks after surgey so the leads dont move. no bending twisting , no lifting of a milk jug wt or over, no hands above the head and NO DRIVING for 3 weeks. All to prevent the leads from moving and it to work correctly so you dont need revision surgery! I have not read or heard of anyone being able to go back to everything in a week!! the surg is not that bad but not that good to be up and mobile and ready for work.!!???

3rd question,
I have been 3 years out of my scs and still on ALL my meds that i had before!! And i also have another stim implnated in my RSD leg, its called a perpheral nerve stim, and that one doesnt help at all either and keeps me on my meds and in Jan i will be getting a pain pump! I will truly be bionic for sure!! lol

Im not trying to scare you by any means but i had no one to ask these same questions too and was totaly in the dark about this and dont want anyone else to be and also have it sugar coated either. The stim worked wonders for me in the begining!! it almost relieved about 40-50% of the pain levels and was in heaven. But then it stopped working and had 3 revision surgeries to try and get that coverage back, all to no avail. You have to try at least the trial of the stim to see if it will work!! thats the evil with this disease, no one konws what will and what wont work and when!! and we have to try all the options out there to seee if this one will work!!

Also in regards to the spreading, when i first got the scs, i had it in my foot and toes alone. Now.. after 2 stims and revision surgeries, and still on meds, it had gone all the way up my leg and back and into the thigh of the good leg!! so nope it doesnt stop and if your doc finds that trick let me know!!

K. gotta try and get some breakfast! if yo uhave any questions let me konw!!!


Amber

I've been looking through the archives from Braintalk.

A couple of comments that haven't been mentioned.

I've taken out the "authors names".


I've had the spinal cord stimulator "offered" to me twice in the last year. The first time was last year at the Cleveland Clinic. I saw a well-known pain management doc who spent almost no listening time with me but was quick to talk about the SCS and insisted that I take a video home. I felt like he was marketing the machine. I learned virtually nothing about my condition from him, except that he thought the SCS was my last hope. Two weeks after returning home, I received a call from one of his office people, asking if I planned to get the SCS. I laughed and replied, "Oh, I thought you were calling to see how I was feeling"!!! LOL Then proceeded to tell her I wasn't interested.

The second "offer" was last week, when I saw a pain management doc here. It was his opinion, also, that SCS is my only hope for pain relief. This was AFTER I'd told him the story about the Cleveland Clinic doc who'd sounded like a Medtronic salesperson! You guessed it--a few days later I got a call from his office telling me that I needed an appointment for some sort of test before I could have the SCS implanted! I had to laugh again, as I'd given that doc no indication that I wanted it. BTW, this doctor told me that the cost, including implantation, is $43,000! That would be out of pocket for me, as my insurance doesn't cover this pre-existing condition!!

Have any of you had a similar experience with big-time marketing of the SCS? For those of you who have now, or who have had an SCS implanted, please don't misunderstand my intention. We all have to make choices, and I may have to make that one someday, just not now. I'm cynical about this--can you tell?! I just don't like, or trust, medical personnel who treat chronic pain sufferers like they, we, are stupid!!!
And...another one...

As a matter of fact I have, and know of a lot more who have also been told it was their last option..Either the SCS, or the Medtronic infusion pump..Well the reason being is that I know some Dr.'s gets $25,000.00 from the company for everyone he implants.... That, my friend, is the reason Dr's preach to us about it being our last option..It isn't really that we HAVE to have it, or that it is our LAST option, it is because it puts $25,000.00 in their pocket..So, don't think your DR. is a so concerned, and worried me, type of dr, when it comes to those 2 things,because it is $$$$$$ that they are concerned about...lol .....
I know that this is alarming. But Marketing is a big Issue! And I'm unsure if you are going to Clev. Clinic or not. Not that I personally have any opinion about Clev. Clinic or their doctors on staff. Just that they have been mentioned so many times throughout the years regarding implantation of SCS.

I believe that you should have as much material and opinions available to you. I spent hours going through the archives, knowing that I would find this point of view.

I'm leaving the members names out, because they have not been active for years so I can not ask their permission. In my opinion, legally, if it's in the archive, it's ok for me to copy and paste here. My apology to the writer, if they recognise their post and they have a problem w/ me helping our new member. No harm was intended. Just support.

Dana

Dana
thank you so much for taking the time to look for this information for me!!! .... that first clip sounded so much like what happened to me! It was such a strange experience! He practically shoved a DVD at me - and I didn't want to see it. He said "well, it is the only thing that will stop your spreading - I know!"

he barely took anytime to look at my info at all, didn't examine me, barely looked at me. I had a list of questions - to which all answers were SCS. I use an RSD cream - he looked at it on my list of current meds and said "who came up with this?" in a condecending tone... :-( I said my pain doctor, and it works....

I just felt very railroaded by the whole thing. Then, when I mentioned to him that my pain doc where I live had a doctor who would put it in if I needed it, he said "oh, you must have it put in by someone who knows RSD. That would be me or Stanton-Hicks" I said that would mean I would have to take time off work and drive 3 hours for any appointments for adjustments, followups etc - and I have no one to drive me - it would have to be me driving. He said well, after the SCS I wouldn't have trouble driving, as my pain would be so much less. I said, it seemed more logical to have it done 20 minutes from home. He said, well, the person must do hundreds of them. I said the person my pain doc knows - it is almost he does. He said "think about it"

I was also a bit put off by being told to do a drug test or I could not see the doctor. I refused. I said there is no reason for it, and if I had to do that, I would just go home. The nurse said all new patients had to or not be seen. I said I was not there to be a regular patient - I am under a drug contract by my regular pain doctor, and was not there for prescriptions - only for a 2nd opinion and consult. I explained I am not on controlled substances on a daily basis, and would not be getting meds from him. I would not do a test. So good bye. So they relented. It just set a bad tone for me. I take my contract seriously, and even getting tested by another doctor didn't feel right to me.

I did not know that there was a way to get to the Braintalk archives? I would have done that.... I tried a couple weeks ago and could not access them. I am thrilled that they are available somehow again. I thought they were lost when the whole thing went down. Do you access them in the same way as we used to, with the "search" utility?

Thanks all - you have certainly backed up my feelings that something wasn't adding up here.

Jules

Amber
Thanks so much for your reply too. You have also helped a great deal. Your experience seems to be more along the lines of what I typically remember reading with the SCS that made me think it would not be right for me the first time my pain doctor mentioned it to me the first time months ago.

My neuro mentioned an epidural infusion. He told me it might help for 3 to 6 months, but would be in place for 1 to 2 months. He doesn't do them, but I want to talk to my regular pain doctor about that. The doctor that I saw last week who was all for the SCS said the epidural infusion was not worth trying, would get infected, only provide pain relief for a couple weeks.

The neuro also said facet injections might help too.

I really like my regular pain doctor - he's an honest, caring guy. He is not set up for monitoring people on constant controlled substances, so if you need that, he sends you to another place. But if you don't need that, he's a really good doctor compared to what I am finding elsewhere! Geesh! For me, I only need a few vicoden every other month, so he is good for me. He is fabulous at trigger point injections!! He knows how to find the exact center of the spots that's for sure. yeooww! But, that helps a lot too. It will be interesting to see what he has to say about this.

At this point, I think I am ready to just stay doing what I already am.

i had a stim implanted in nov of 04 the trial helped, but then when i had the perm put it, i still had the stimulation and the coverage but it didn't help. and my stupid doctor took me off all my meds right away... so i was dying, but he was like just give it a chance... so i was like ya ok... then it spread up to my neck (it was only in my left arm from fingers to elbow). and i'm certain its from the stim cause one of my incisions is right between my shoulder blades at the base of my neck. i told my doc this and he told me to get over it and get a job. i was able to drive like a week after, but other then sitting and laying down i really didn't want to do anything i hurt so bad. eventually i moved and got out back on new meds and just turned the stim off. i had it removed in july of this year. and my back feels a lot better now, it would get stiff and slight back pains from the lead and the generator getting hit... and then of course no more random shockings....

Day lilly,

Yea i hear ya about havingsecond thoughts about having the stim.!! I would do it al over again, yes, even to konw what i would be like i am now. You never know what will andwhat wont.! But kudos to you not choosing and standing up to forcefull docs and not being pushed by the medtronics company!!

my doc is just like yours.. except a very strong brooklyn accent..and he is very down to earth and "common" ( you know, not the snobby doctor type that thinnks thier poo doesnt stink) and he sits down with me and talks about his family and asks about mine and very caring even though hes very big and has a cool accent! wouldnt trade him for the world!! You have to stick with the docs you trust, and trust your gut!!

I had the epidural infusion also, but i was in the hosp for a week with it and then had it taken out at the end of the week and all the pain came right back after the meds that were in my system wore off. I would have killed to have it back in. IT WAS AND IS HEAVEN!!!! there are always risks of infections and evreything , but as long as you keep it clean and dont over do things around the house ect, you will be fine!! my doc couldnt get a nurse or anyone to come to my house to do the epidural tranfussion bags adn to mix the meds and chnage the pack that he wanted ( i live and hour and 1/2 away from him and the hosp that i was in) so i couldnt do it, but again , would kill for it again right now. That is why i am having a pain pump put in , in January!! i will be able to have the same meds i had in the epidrual and hopefully start getting my life back!! but i then still ahve a long road in head of me with the funky shaped foot and all!! but at least no pain!!

The epidrual was easy , just make sure you eat before he does it! I didnt eat (rather the nurses wouldnt let me , when my doc told me to) and i passed out really deep and was hard to get me out of the dark for a while.. but it was all fine, it was all because he was messing with the fluid in the spinal canal, adn was back up and walking in an hour!! and eating..lol


I never heard of fasset injections before, what are they???

Have to try and get some sleep! talk to you soon!!!


Amber