[Rrae]

My 'wonderful' SCS experience
OK I am frustrated and confused! AHHHHHH!
I came home a few hours ago with my trial leads in place
(L1,L2 i think) For ONE thing, the hospital surgical floor is very busy today (It was like a sureal bad dream from a rerun of "Scrubs"!) So I felt as tho i was very rushed.

The procedure went great (took 15 minutes - bam DONE) They wheel me into my little 'area', the Medtronics Rep handed me the equipment and a quick 'easy' guide on how to use it. Said he had another client waiting, so couldn't stay long....then my Pain Doc who placed the leads comes by and gives me some quick instructions mostly about the meds. He said to STOP the Fentanyl patch cold turkey! This is NOT the way he talked when we scheduled this deal!! Hardly anything was said about restrictions as far as the BLT's. All he said (wouldn't even let me FINISH a question!!) was -- the leads are taped down real good....just go and live your life....do the things you weren't able to do before the pain...!
Now I remember why i ran from this guy a year ago when this was first brought to my attention. This guy is cocky and seems to think "PAIN" isn't a reality. !! I wish HE could wear our shoes just for ONE FRICKIN HOUR!!!
For ONE thing, my BACK hurts like hell from the procedure....I'm already getting intestinal fortitude from the beginnings of what i presume to be withdrawal....! How in GODS name am i supposed to 'GO LIVE MY LIFE!!"
IN F O U R DAYS ?! I'm supposed to make a life-long drastic decision in 4 days.

I apologize for sounding this way, I'm sure you understand. I'm trying to remain calm and remember the feedback i've received so far....

Someone did say they were quite sore the 1st 2 days and by day three they were a whole new person. Maybe that'll be my case - i hope. But i was under the impression that we had a whole WEEK to do the trial?!

But the medication thing MAN! There is NO way i'll be able to just 'throw away' my pain patches. THAT is NOT good advice AND it goes against what he told me during the consult a few wks ago.
Ok, i'll shut up. I'm just PO'd about the way the whole thing went. It's just another day and another dollar to these guys, but this is a LIFElong decision to me!
And only 4 days to decide. 4 days to wean thru all the different types of pain I'm dealing with ON TOP of the orginal condition. Gonna take a miracle from the looks of it.

Sorry for the Rant...

If i haven't scared off the entire forum, i'd really like a hand here. Cuz i sure ain't gettin it from the medical professionals.
Rae

[ams0310]

Well, if you are the world's biggest baby, I am in 2nd place sweetheart.

I can tell that you have had a very busy and stressfull day & I know it is so much easier said than done, but please try to take it easy. You deserve it!!!

I had my trial done in August 09 and I know that each and every person is different...I take oxycontin (40mg at the time) along with percocet 10/325mg and a handful of other meds and my drs. didn't have me stop cold turkey. I was told that if I did I would become sick pretty quickly.

I was told to take it easy the first couple of days and then try to do some "normal" things "gently" after that. My trial SCS was in for 7 days, by day 4-5 I was feeling 1/2 way decent...not great, but decent...but I didn't stop my meds either.

I am so sorry to hear that your day sucked. When you do go back in a few days, please talk to the PA or whoever is taking out the SCS and let them know how you felt, esp. the rep. as this rep is going to be with you for a very long time. You need to have a good working relationship with them. If you are feeling rushed now during the trial no telling how it will be when you have the perm. put in....just my 2 cents.

Keep us posted as to how you are feeling, feel free to pm me if you want to chat or need anything

Awna

[hannah1234]

NOO it is completely normal, I dont know why he told you to stop your meds though?? strange.... i was practically in bed the whole time when i had my trial in. Big baby i am you arent the only one. But i noticed a huge difference in pain when it came to putting shirts on etc.. touching things.... and that is how i knew it would work. In my head- I figured that if I got some relief from the trial then after the whole thing was scarred into place then it would HAVE to give me relief because settings etc can be changed!!! DONT GIVE UP!!!! yes you feel like you just got the shi!t beat out of you and you are running through hell. promising huh?? its the truth though, but I am speaking on my behalf it only got better from there sooo-- it can only get better for you!!!!

I had my 3rd ketamine infusion today and I am feeling GREAT!!! so if my words were jibbberish it is still the high in me dont give up. The trial hurts horrrrrribly.how they say go on with your normal life beats me - well i do know- THEY HAVE NEVER BEEN THROUGH THE PROCEDURE OR THE PAIN- soo they say it with a grain of salt. keep us updated more days to come.

[bassman]

Rae,

You are absolutely right that it is frustrating to have the doctors rush you in this situation. Cocky – not letting you finish a question – giving you the brush-off – that is all what gives the medical field its bad reputation.

That the Medtronic representative also gave you the little more than time of day is inexcusable. He/she is supposed to be the expert in this deal. She should have taken as much time as necessary to go over the controls with you, and let you know what to expect and what kind of restrictions there were.

You have hit it on the head. This is a major life-long decision, not to mention very expensive for you and/or your insurance and very profitable for Medtronic, the doctor, and the clinic. You need to be able to come to a good conclusion without feeling rushed.

I have contended that post-surgical instructions should always be given before the surgery. Your experience is not atypical. The doctors and other staff are often very hurried and have many other patients scheduled the same day, so they dash through instructions and send you on your way. Thank God my wife was along when I had my stimulator put in. I don’t remember a thing. They were in a hurry to get me up and out, whether I was coherent or not!

A similar thing happened when I had scheduled foot reconstruction. After the operation, when I was spaced out on morphine, had wires and tubes running in and out, and could barely stay awake, the Physical Therapist came in to teach me how to go up and down stairs with crutches. (That could have been done anytime in the previous four months.)

I wonder if you can call your doctor’s office and ask about an extension of the trial. They only want to keep them in for a couple of days because of the risk of infection. Also, the longer you keep it in, the greater the risk if yanking the leads. But, if you have all sorts of weird feelings from the Fentanyl withdrawal, pain from the surgical trauma, and so on, how in the devil are you going to decide that the trial is really working? Maybe you could see if one or two more days would be possible. The trial removal is not a big-deal procedure. Mine was done by a PA as an office visit and took about 15 minutes.

Now, when I had my trial, I could tell it was working right away – at least as soon as the anesthesia wore off. I had all sorts of discomfort, but it was not the same as the RSD pain I was used to. Maybe by this time tomorrow, we will be hearing how good you feel! Good luck with that.


Mike

[vannafeelbettr]

Rrae,

The only theory I could come up with as to WHY your doc pulled you from the patch is because you might not notice the difference in relief that the stimulation provides if the patch "numbs" things for you. Nonetheless, the withdrawal from the fentanyl would be an extreme distraction, including disorienting you, and you certainly deserve to be completely with your wits when making this decision for yourself. I know it can be very painful where the leads are, but try not to focus on that, but rather the difference in your PN pain. Is the stimulator providing the relief in your limbs?? That is the bigger question and issue you need to focus on now..... the hell with everything else (it will pass). Four days is not a long time to come to that conclusion (mine was in for 7) so you will need to pay attention and take notes. Do your homework and don't let the BS distract you

I'm here for you and good luck!!!! Vanna

[loretta]

Originally Posted by vannafeelbettr

Rrae,

The only theory I could come up with as to WHY your doc pulled you from the patch is because you might not notice the difference in relief that the stimulation provides if the patch "numbs" things for you. Nonetheless, the withdrawal from the fentanyl would be an extreme distraction, including disorienting you, and you certainly deserve to be completely with your wits when making this decision for yourself. I know it can be very painful where the leads are, but try not to focus on that, but rather the difference in your PN pain. Is the stimulator providing the relief in your limbs?? That is the bigger question and issue you need to focus on now..... the hell with everything else (it will pass). Four days is not a long time to come to that conclusion (mine was in for 7) so you will need to pay attention and take notes. Do your homework and don't let the BS distract you

I'm here for you and good luck!!!! Vanna

Hi Rae, this sounds like a nightmare! I'm so sorry. I'm glad others have answered-I have no experience with the SCS. I've had experience with bad doctors-which I dropped. I hope others that have had the SCS see your thread and respond. It does sound like 7 days is the norm- was that your understanding before having the trial? Maybe you could contact the medronics rep. and ask. Hope the best for you, loretta with soft hugs

[Lynns409]

Yeah, I think that I had a five day trial. And it is kind of strange to try and live a normal life with wires coming out of your spine. And don't go off of the fentanyl completely- maybe cut your patch down a bit slowly?

But with the time that you do have, I think that you can make a good decision. It is overwhelming, but think about the things that you CAN do, and the places that you can notice a difference. Make a meal and try to notice how long it takes for you to get tired or feel pain. Is this better than how you normally feel? Is your skin less sensitive? Is the temperature in your affected area better? I promise that you don't have to go out jogging to figure out whether or not this will work for you. Just take a deep breath and try to focus on what you are feeling.

Oh, and keep a journal! Write down how you are feeling and what you are thinking. That way when it comes time to make this decision you can accurately remember how you were feeling.

I don't really remember too much about my trial- but I definitely remember subsequent revisions, and it does hurt. They're poking things into your spine after all! And this is a new feeling and experience- sometimes when you don't know what to expect it's worse than when you do know what's coming.

In science we usually like to change one variable at a time- so I'm a bit worried about stopping a medicine and having the trial all at once. It's probably best to stay on the meds and just focus on the trial. After all, what if you feel crappy and have more pain from stopping the meds, but attribute that feeling to the trial? You want to be able to have a semi objective view of this trial run.

Any questions, just holler.

Lynn

[keep smilin]

Originally Posted by Lynns409

Yeah, I think that I had a five day trial. And it is kind of strange to try and live a normal life with wires coming out of your spine. And don't go off of the fentanyl completely- maybe cut your patch down a bit slowly?

But with the time that you do have, I think that you can make a good decision. It is overwhelming, but think about the things that you CAN do, and the places that you can notice a difference. Make a meal and try to notice how long it takes for you to get tired or feel pain. Is this better than how you normally feel? Is your skin less sensitive? Is the temperature in your affected area better? I promise that you don't have to go out jogging to figure out whether or not this will work for you. Just take a deep breath and try to focus on what you are feeling.

Oh, and keep a journal! Write down how you are feeling and what you are thinking. That way when it comes time to make this decision you can accurately remember how you were feeling.

I don't really remember too much about my trial- but I definitely remember subsequent revisions, and it does hurt. They're poking things into your spine after all! And this is a new feeling and experience- sometimes when you don't know what to expect it's worse than when you do know what's coming.

In science we usually like to change one variable at a time- so I'm a bit worried about stopping a medicine and having the trial all at once. It's probably best to stay on the meds and just focus on the trial. After all, what if you feel crappy and have more pain from stopping the meds, but attribute that feeling to the trial? You want to be able to have a semi objective view of this trial run.

Any questions, just holler.

Lynn

Rae~

Sorry that your experience was "trying" at best.. I remember how sore my back was after mine was inserted..I had it for 5 days which was not as long as I wished in order to test drive it fully.. but I think the Dr.'s afraid of infection as it is open ended... As far as the patch, I am not and was never able to use it as I couldn't take it off from my skin cuz of the sensor issue..but I think you should ween yourself... how is he to know anyway?? Dr.'s and people say things from the cuff and probably needed to say at your descretion... see how you feel slowly taking yourself back...go easy the next few days..you have been thru a procedure and you need to becareful....

Let us know how you are doing and lets chat before you have this trial removed okay???? KS

[hannah1234]

RaE,

Feel free to pm me and i can give you my cell and we can chat before you get your trial out!!! or before your decision is made

[lostmary]

You are not a big baby. If you are, then I'm a monkeys uncle. When I had my trial I was in bed in such pain for almost 3 days. by day 5 it was better and I was able to get up out of bed and walk around. It was wonderful when I had the trial. I then got my perm and a year later had it changed out as the leads had moved and the battery, which was in my butt, had moved. I had another implanted, and I never got to find out if it was better or not. After 3 wks I developed an MRSA infections, had it removed and swore I would never have another surgery to try to make me feel better. I lied. a year later and I have tried the trial for the pain pump, and it is like getting my life back. I get the perm unit implanted in 10 days. I can't wait. I know with the scs I couldn't ever ride my horses again. I will be able to with the pain pump. I want my complete life back with all the things that I used to do. Riding horses is one thing that I live for. Once the pump is healed I'll be able to ride again. I can't wait. I do know that the pump is the way for me. I found the scs too restricting. But that is just me. You need to experience the trial and see if it works. It doesn't for everyone. If that doesn't work, then maybe the pump. That is why you can do the trials. don't let anyone tell you that you have to get this or that. I had to find a dr. that is in another state in order to get the pump. Why/// well, it seems, like you have experienced, that once you get the scs, the dr is done with you and you are handed off to the metroncis rep. With the pump, the dr. is committed to working with you for well over a year or so while they work on the correct dose and cocktail that works for you and you alone. I still had to take my drugs, even while having the scs. What I wanted, was to get off drugs so I could drive and live.... Iknow the future is waiting for me now, and I'm already looking for part time jobs for the future after I heal in 6-8 wks from surgery. My life is back..

Hugs
Mary