NeuroTalk Support Groups - A few SCS questions

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- SCS & Pain Pumps (https://www.neurotalk.org/scs-and-pain-pumps/)

- - A few SCS questions (https://www.neurotalk.org/scs-and-pain-pumps/127882-scs-questions.html)

Angela, where did you get the waterless shampoo? I didn't know there was such a thing. That will definitely be put on my "purchase list". How in the WORLD did you tear the implant loose just from falling???? :eek: I am just cringing at the thoughts of that! Bless your heart! Just the fact that you are letting them go in a 3rd time for the battery must mean you have had SOME kind of success with it, right? How much relief would you say you have gotten?

Rae, You nailed it on the head when you said its passed on as its all in our HEAD!!! I was in a relationship for 13 years. He finally couldn't take my pain issues and mood swings nor could he understand them. I heard a few times towards the end that it was all in my head! I can't say I blame him in a way because if someone has never been through it, they truly don't understand. But in another way, I know I would have stuck by him if it were reversed. If this works, I will really kick myself for not doing it 2 years ago because things wouldn't be the way they have turned out. Thanks for the suggestions of the other forums. It took my brain almost an hour to realize if I went to the main board, I would find those topics lol I will definitely stick around to chronicle my progress. I don't have a way with words like you and Mark do but if one person can take something away from what I go through, it will be worth it to try and help.

Mark, I have read your posts and you are definitely the poster child for SCS!! Yes, that is a compliment too lol I have been talking with a rep from Boston Scientific for a while now. She has yet to sell me on it. She told me that isn't her job. Her job is to answer any questions and let ME make the decision on what is best for me. She is an RN. I think that is why I like her so much. Now I am going to have to threaten her with 100 lashes of a wet noodle if she lets them put any other SCS in me but hers lol Seriously, she has been VERY patient and answered numerous questions for me. She calls me twice a week to see how I am doing. How do you like the BS unit? Is it easy to use??

My pain doc has given me the Medtronics package several times. I was finally honest with him in May and told him I do NOT want the Medtronics after all my research. Yes, I know there are success stories with Medtronics. I said I am interested in the BS implant, does he do those? He asked me why and I was very honest. I said bottom line, I want the wireless remote. I said if I am going to lead an active life again, I don't want to be tied down to a bunch of equipment. I told him my other reasons but that was THE main reason. He grinned and said, as usual, I can count on you to do your research. He then admitted his favorite rep to work with was the BS rep but just passes out the first package he grabs when discussing the SCS with patients. It just so happens with me, its been the Medtronics package. I was also given a list of patient advocates for the SCS. Naturally, they give the positive patients to make one feel better but I already knew there were the negative patients. We have all read those stories online. Are we allowed to post links to blogs? There was a blog I came across a few months ago where a gal chronicled her prodecures and she has the Medtronics SCS. Like Mark, she is an attorney and her posts are very fun to read.

Mark, thinking about the permanent implant and those incisions does turn my stomach in knots. You have given me a little comfort. I thought my laminectomy/fusion recovery was a breeze. I had been in so much pain prior to that surgery that to wake up and realize that pain was gone had me ready to dance a jig. I ended up in the hospital for 5 days (not allowed to get up for 3 days because of complications) but even through that, it was a breeze recovery. Just a slow recovery.

So here is my warped humor regarding this SCS.......I joke with my friends and tell them I am going to have an alien baby (the implant). I said it is going to go in my butt so when I meet a good looking guy, I can ask him if he wants to burp the baby. I tell my kids that I am going to go on the Maury Show. ET..........you ARE the baby daddy!!! :D We will have to name this alien baby soon :p

Recovery with Boston Sci

Good Morning Jami-:Wave-Hello:

Recovery with this new Boston Sci side kick of mine has gone very well. No, not anywhere as severe as the recovery from the laminectomy/discectomy/fusion. There is no back brace. I was sent home with ample bandaging of the incision sites and four med prescriptions to add on top of my pain management meds. I was sure to take them all. Keflex as an antibiotic to avoid infection, Decadron as a steroid to help through the first few days of potential inflammation, Flexeril for potential spasm control, and Percocet as a pain med were my arsenal of post-surgery weapons. I was sure to use the Keflex and Decadron in full, and those scrips lasted only up to a week at most. The Flexeril and Percocet I weaned away through the second week to discontinuance. There is still some soreness from surgery.... gosh, they did remove a bit of bone, pull back on some muscle, a bit of cutting, some push through of wires between the paddles and generator, so it seems a reasonable pain profile which is waning.

I am thrilled with the Boston Scientific unit!:yahoo: Would I be their poster boy.... in a heartbeat! The unit works so well, the controls so easy. I refer to my remote as a garage door opener; although, I was not given a program to actually open the door.:) It was installed with only a partial charge, so when I got home, the base unit was plugged into the wall for its charge, then I took a glue patch and put it to the test about a week after surgery. Interesting how the unit emits a beep while zeroing in on the generator, in my case in the right hip, then when it is directly over the generator, the beep stops and SMACK:ooo:, it stuck it to me..... Well, OK, not necessarily SMACK because only the week before they had cut my open and stuck a foreign object in there, but you get the idea.:Ponder: I was a little more ginger with the removal of the adhesive.

Charging really only took about 45 minutes. My remote indicated full charge, and after five days of continuous use, still indicates full charge. This puppy is my new friend as it has brought me freedom from the "drive me to the brink of death" nerve pain, and I have been free from that pain since last Friday at mid-day when we calibrated/programmed the generator. I am HAPPY with this. Friends say they hear it in my voice and see it in my eyes. I feel as though God blessed me in a great way, and I am grateful.:Thanx::smileypray:

Now to the beginning of withdrawal from the pain management meds. This will be a good thing, I can feel it.... I hope and pray yours goes as well. Yes I do!:icon_biggrin:

Glad to have Boston Sci,:Dancing-Chilli:
Mark56 PJ :)

Since I am having an excrutiating pain night, yet another question dawned on me.

I am having the SCS for my lower back/left leg BUT I also have chronic pain issues with my neck/shoulder and right arm. Tonight is one of "those" rough chronic pain nights more so in my neck. The C7/T1 disc is the area of concern for my pain doc. I am already fused C4/5, C5/6 and C6/7.

While I am on the trial or even after I have the permanent implant done, how am I going to deem that its a success if I am still having to take pain meds for my neck? :confused: I also had read somewhere that having the scs implant can create a problem in the event future surgery is needed. Has anyone else found this to be the case? We know I need surgery on my neck at SOME point, it just won't be any time soon (if I can help it).

Does anyone have the SCS for the lower limbs and continues to deal with CP for the upper limbs? Can the disc that is the area of concern at the moment create any problems when it comes to putting the implant in since the incision is above the lumbar spine?

Wow,
That's a good question. ! The very first thing that came to mind is make SURE you get an up to date MRI of your spine B4 getting the implant....in case they need to refer to that regarding your issues with upper cervical.
We can't get MRI's after getting the implant.

Someone here (can't remember who) was implying that they were gonna get a dual lead implant, one lead up higher than the other to cover cervical and the other lead for the lumbar.
Others have successfully had 2 implants.....
I'd make sure you have good communication with your medical team and have the plan all layed out on the table (and in writing!!) ...i'm a biggie on that, because I've seen too many times when a patient was told ONE thing, yet in reality their chart was different.

The medication question is a good one as well. I remember having a fit over how i was going to manage during the trial and trying to determine if it was working.....but honestly.....it all just 'works out'......you know your body and you'll somehow 'know'.....even if you have to try and cut your meds way back for a short time to determine if pain is decreased in your lower body.
Hopefully your Dr will coach you thru this.

I'm sorry you are having such a bad pain day.
Flares still come.....and to this day i do not comprehend what i do or don't do that triggers a 'bad' day.
They suck. :(

Hang in there
Rae
:hug:

Her name is Fionab

Quote:

Originally Posted by Rrae (Post 676211)

Jami- Look up Fionab! She is going to receive dual installations for Cervical and Lumbar issues. Coming up. Take a look at a thread where she discusses this here: http://neurotalk.psychcentral.com/sh...ghlight=fionab

Give her a shout, because she may be able to to help you with your questions regarding the "hey, wait a minute, I have chronic pain in more than one area. Truly, a lumbar mounted and directed device, as I have been told, will only treat that lower limb difficulty. You need to write to Fiona. Now is a good time to be asking those all important questions of both Fiona and your doc.

g'night,:Zzzz:
Mark56 JP:)

I had one completely different set of questions for the doc when discussing the scs and can see that there is a lot more to the SCS than basic questions like what limitations, how is the trial and permanent done etc. Maybe it would be helpful to come up with a list of questions that people can use when they discuss the SCS with their docs?

I will look for my notepad with my original questions to add or start a post about. Can you guys think of questions that may be helpful to ask?

Rae, I didn't think about having an MRI done on my neck now. I am almost afraid to have it done because of what they will tell me. That could impact my decision about the timing of having the SCS done *sigh* I will definitely discuss having it done at my appt. though.

Mark, because of the future surgery that will have to be done on my neck, I am not a candidate for a dual scs. That much my doc did tell me. I just need to go more into detail with him about how that is going to affect things at a later date. I think I got so psyched about finally deciding to go forward with the SCS that my brain went foggy on some of questions I should have asked.

By the way, how long was it before you were able to drive after your perm scs? Did you drive at all with the trial in place? After my lumbar fusion, I think it was 4 - 6 weeks before I drove. That was just to my local dr. appt. I probably could have driven before that but was too nervous since I couldn't "twist" to look over my shoulder very well - I had to wear a back brace for 3 months. After that surgery, I had to rely on my daughter and ex to be my chauffeur for the most part. I need to plan this part out ahead of time since I don't have him to help and she now has a daughter who has therapy 3 times a week.

Hi Jami-

Yep, I put together a list of questions and took them to the doc, reading them off, one by one, as we worked through the determination whether to proceed with SCS, because, frankly, I feared risks and such. Maybe we ought to start a sticky thread at top of the list, you know. That way folks could post the questions they asked and future readers could take a look, putting together questions for their docs as they read through the stickies.

Still not driving. Wasn't allowed during Trial, told not to until a few weeks out from permanent, and since I am still weaning off of the morphine, frankly, I have not wanted to drive as a prescribed user of morphine. You know, reading the cautions on the bottle, and taking that to heart. I just wanted to avoid the risk of another wreck because my reaction times are slowed, and potentially hurting others or myself. Further, can you imagine the impace to a case if a prescribed user was on the witness stand in a trial wher the question is posed "Mr. Soandso, would you please list for us the medications you had taken on the date of the traffic accident in question?" I mean, gee, to answer "Well, I, uh, was taking morphine sulfate.....among others." The counsel for the plaintiff would have a heyday. Thus, some of this refraining from driving is following prescription bottle restrictions.

So, maybe we should start a sticky thread for those questions one has posed in their own case so others might learn. I agree with you.:Good-Post:

Mark56 PJ :)

weaning off pain meds

Quote:

Originally Posted by Mark56 (Post 675513)

Hi Jami! I am thrilled you chanced to come here and post such worthwhile questions regarding one of the more radical surgeries offered for treatment of chronic pain available in medicine. This thing called SCS for those of us whose issues are spinal.... spinal cord stimulation.

Being a veterean of the operating table so much so that it is almost nauseating to contemplate, I was brought into awareness of SCS a couple years ago. I looked briefly at it, read the risks of surgery, KNEW I did not want another surgery, and went UH UH, this is NOT for Mark. No way, no how, no no no no NO!! Sure, friends had told me of the surgery and its effect on family members or other friends they knew. I was closed. NOPE, not gonna listen. I was afraid to have another in my list of spinal adventures. My fear..... it was a heightened fear of the possibility of something going wrong, you know the fine print part, no not the death part, the Oops, you are now paraplegic part. I felt at risk. I felt harmed sort of by the system that was supposed to have helped alleviate the issues with which I struggled. I was frightened.:eek:

Fast forward to January of this year. Finally, having suffered chronic nerve pain for over half a decade and frankly being sick and tired of the life of side effects with morphine and such, I actually listened with favor when my wife, Cleo, said "Here, read this about spinal cord stimulation. It might help." The article was about the ANS EON Mini unit. I read the article. Became enthralled. Read more, researched ALL I could possibly find. We had an appointment scheduled with my physiatrist anyway, so we went in article in hand, and asked what he thought. He said something to the effect "You are the perfect patient among all of my patients for whom this is meant." I was hooked. We watched the video. I spoke with and emailed with patient amabassadors who had the unit. We prayed about it. The answer was clear..... live with pain as I had or proceed. We said yes! :Dancing-Chilli::Dancing-Chilli: [Reminds me, I still have to learn the Salsa for Cleo]

The Trial came 13 May. Two very tiny POKES if you will, by about the largest gauge needle known, to insert the leads, no incisions really, the leads were sutured to better assure they stay put, and I was sent home with wires taped securely to my back and a generator strapped to my waist with a velcro enclosure. I was IN HEAVEN. I sobbed, not because I hurt, rather, because I felt no pain, NO PAIN. My wife asked how I felt and I cried due to the joy. The picture the fumpy Ken doll with grey hair and tears running down its cheeks. JOY AT FEELING NO PAIN! It seemed a miracle.:yahoo:

Sure, I could not shower for the week of Trial. The hair got rank. Sponge bathing was OK for the other necessaries. Lifiting my hands above the head, a no no. You see, the wires were just kind of laying there in the dural space next to the spinal cord and the only thing holding them in place were the sutures at the exit through my skin. So I behaved. Wanted that benefit as best I could get it, and it was soothing, glorious, wonderful, a Gift from GOD as though He had placed those wires in place. That week charted out at 70% to 100% pain relief for me in my situation; not necessarily what everyone gets, but for me, a keeper. I wanted the real McCoy. Oh, how I hated it on 20 May at the end of trial when they removed the wires, the unit, that lifeline which had been thrown to me. But gone it was, pending insurance approval of the permanent implant.:thud:

So, here I was, a patient fully read up on the ANS, who had actually recieved a Boston Scientific Trial [you can read about that in my thread on ANS EON MINI], you know when you are there in the prep area waiting for the Trial surgery and the rep comes in and says, "Hi, I am So A. So from Boston Scientific!" I did a double take! I told him he must be in the wrong room, wrong patient, I was supposed to see the ANS guy. NOPE. Some flub up... in the military they refer to it as a SNAFU. :shocked: Oh well, after answering 30 minutes of questions, we proceeded with the Boston Scientific unit. Best decision we were led to make in our lives. Wondrous.

I HATED THE WAIT FOR THE PERMANENT. OK, that is out. Now you know. Hardest wait you will make if the Trial goes very well. It passes. We ALL help you through that part. Really!:circlelove::grouphug: So many here sent messages of encouragement during that time, a blessing that humbles.

29 June, implant of the permanent. A four and a half to five inch incision at about T8 for me to allow for the laminectomy to enable insertion of the paddles. A smaller incision at the right hip on me to make for the pocket to receive the generator. The most painful part is that channel they make through the tissue to bring the wires connecting all of the works. But, you know what? I know, I KNOW it was well worth the pain, not nearly as painful as my discectomy/laminectomy/fusion, and more rapidly recovered. Here we are two weeks post op, and I have withdrawn from the post op pain meds prescribed IN ADDITION TO MY CHRONIC PAIN MEDS. There is some discomfort yet at the incision sites, but it is passing and not requiring the percocet chaser to my morphine chronic pain med. Showering was allowed two days post op.

Last Friday, we calibrated my generator to me and from that moment it has run 24 hours a day. Via the remote, I set the little guy at different levels or programs depending on how I feel, or when I go to bed, just turn it down low. It works!!!!!!!!!!!!!!!! :yahoo:

Five days without ANY NERVE PAIN. NONE! Went out into the middle of our street last evening and shouted at the top of my voice Praise GOD, I FEEL GREAT! I feel I owe it all to Him. The very develpment of this wondrous technology. I am humbled.

Today, we went to my physiatrist for a follow up post op. Told him the above. He was thrilled beyond measure!! Now we are working to wean me off of the pain management meds. I have a schedule. With God's strength, I am committed. My wife and I have so much hope for a life restored in large measure due to this miracle invention.

I understand everyone is different. Results will vary. But, for me this brings promise of a miracle worked in a life that was whiling away from one med dose to the next, much sleeping in between. That is not life, it is subsistence. As for me, I want life.

Now that I have probably exceeded the limit of anyone's tolerance or the posting size on NT, please let me assure you that you cannot ask too many questions. Any of us is willing to chime in to the best of our ability.

Time for me to take a nap,
Doctor's orders you know,
Don't overdo post op,
Praying for you in your approach to Trial!!:smileypray:
Mark56 PJ:):hug:

Mark: thanks for all your input and knowledge, I have learned so much in such a short time from all of you here on the scs forum. Just a suggestion, I have had gi trouble several times from fentanyl patch and have used suboxone so that I could comfortably get off patch. Have you considered this? I am so sensitive when coming off these meds, this is the best medication to prevent withdrawel symptoms. Just thought I'd throw this out. Pam

Suboxone for tapering off Fentanyl

Hello Pam!
you bring up a great suggestion.....and i actually asked my Dr about this med (suboxone) and if i recall correctly he said that it takes a specially licensed physician to prescribe it.
I was surprised how easy it was for me to taper off the Fent patch. I was at the highest dose of the 100mcg (every 48 hrs!)....they are supposed to last for 3 days, but not for me.....:o I had a very high tolerance to opioids and was really nervous about weaning down......but I'll honestly say, that once I had the SCS implanted and my pain went down so much, my body just needed less and less of the meds.....we did it safely a month at a time going from the 100's, 75's, 50's 25's 12's .....
I won't fib by saying there weren't any 'bad' days, even to this day I can get a pain flare from hell and not knowing what on earth i did to bring it on..!?

But, I didn't experience ANY of the horror stories I've heard of people trying to get off these meds. Actually i recall seeing a documentary or something that indicated that those of us who truly suffer chronic, longlasting severe pain and have legitimate reason to be on high strength opioids,, our pain receptors soak them up and control the pain as it is intended. It's usually the folks who are taking strong pain meds without really needing them, or abusing them in some way....they are the ones who have the struggles of getting 'hooked' and having to withdrawal.....because their pain receptors didn't need them the way a 'real' pain sufferer does......and that's why they were being used to 'get high'......no pain receptors 'received' them, so their brain signals directed the effects to attain a euphoric feeling.
Does this make sense? i know what i'm trying to say, but i'm afraid it isn't coming out right....:o

Everybody is different and the important thing is to have a physician in a good trusting relationship and the tapering is the KEY. Taper.

Anyway, thanks for bringing this up. Good discussion!
I hope more will chime in on their feelings on this.

As always,
Rae
:grouphug:

Hi Pam and Rae!

Thank you for your thoughts about withdrawal and meds that might help! I am currently on the taper off mode, taking less as my doc directed according to plan. He did provide me a scrip for a med that is intended to aid controlling the withdrawal symptoms which could occur. I will have to get it out, look it up, and see whether it is the med or related to the med you described, Pam. I just put it in the bag with my other meds and left it once home. I will take a look.

Hopefully, I will not need this withdrawal med. I just don't like having to take meds. Nope. Wasn't in my makeup before my wreck, and I'd like to return to that profile. My doc has high hope for me. I truly have a belief this will go well. I have, as said before, withdrawn from the meds prescribed post surgery without incident. Yes, I know these pain management meds have been in my system a LOT longer, so the bodily reaction may be different. We are keeping a weather eye here. Time will tell.

I have not had any GI issues since beginnning tapering off. The GI issues I have endured in my love/hate relationship with Morphine I have mostly controlled with healthy doses of prunes and dried apricots plus a bit of one of those Pooh recommended O.C. softeners.

Thank you both very much,
Mark56 PJ :)