A few SCS questions
 

My pain doc (who is also an anesthesiologist) has tried to talk me into giving the SCS a try for 2 years. I can't stand the pain in my back and left leg any more so I am going for it.

I am in the process of getting my SCS trial. I have my psych evaluation next week, meeting with my doc the following week to schedule the trial, then we were aiming for the permanent to be done in Sept if all goes well.

I have read forums for hours, more hours and then even more hours to make sure I know what to expect. Just when I thought I had my brain wrapped around it, something dawned on me this morning that I had read.

Because I am disabled, I have Medicare with Humana as my supplement. Somewhere, I saw it mentioned that the SCS is considered durable medical equipment. I also saw that it costs a pretty penny.

Is it actually considered DME when the ins. co. pays? If so, I think I would be required to pay 20% and my max oop is $5,000. I can't afford that. Anyone out there have this done through Medicare and can give me a ball park range of what you had to pay out of pocket?

I fear that after I finally got myself psyched up and looking forward to having this done that I have to put the brakes on until after the first of the year -when I can change plans to cover more :(

I have other questions but those won't matter based on if the above is the case. Any help/info would be greatly appreciated!!

Jami

Hi I do not have medicare but I do have regular insurance. Mine is 90/10. My out of pocket was 2,000 for the year. My doc did my trial and it was a copayment of 30 dollars cause it was done in office. My permanent was done in the hospital and the bill was 130,000 dollars. My insurance would only allow them to charge me 80,000. They did mine without payment upfront and I was able to make payments to the doc, the ansesia, and the hospital. No one made me pay of front so that was good. I make them like 20 dollars amonth if I can. Maybe they will let you make payments. Hope this helped some even though I dont have medicare maybe you can wrap your head around some numbers. Good Luck!!

Thanks so much for your response! It does help me get my head around it numbers wise. How long were you in the hospital? I did know that the trial would be covered under my dr. copay since he is doing it in his office. That helps some. The big difference in my plan is I have a $100 per day hospital copay and everything is at 100% after the copay BUT DME is only paid at 80%. In the long run, I think the cost would even out because I will be able to cut down on meds and dr. visits (I HOPE!!! lol)

Here are a few questions:

My first question is an off the wall one. I understand a shower can't be taken while the trial is in place and I understand that. BUT........how will I be able to wash my hair? Am I right in understanding there is no bending while its in place? I guess I can stand outside in a rain coat and let my kids spray my head down with a water hose LOL When the permanent implant is done, am I allowed to lift my arms over my head to wash my hair? If not, how long before I can do that? I live in TN where the temps are MISERABLE through September so I am a little concerned about grossing myself and everyone else out with a smelly body and nasty hair lol

Outside of the normal no BLT after the surgery, are there any other limitations/restrictions?

There is a very strong possibility that I will have the paddle leads done due to scar tissue. How long is the incision for that procedure and approximately where will the incision be? How small of an incision is done for the trial? My doc told me that he prefers putting the implant just above the waist but I am probably more of a candidate for the bionic butt club since I have PLENTY of padding there lol Do jeans or pants rub on the implant? I have heard that it can be pretty sensitive/painful where the implant is. If this is the case, I need to get some different pants or jogging suits to wear for a while.

Ok this is enough to get the questions rolling. I am sure I will have PLENTY more. I appreciate any input that can be offered!

Hi ~ I had the implant for 6 months (it had to be removed) so maybe I can answer some questions.

I can't for the life of me remember how I washed my hair during the trial period. I know I must have because it was a week long trial. But that was 12 years ago, and I just can't remember. After the permanent implant, yes I could put my arms over my head to wash my hair but I had to be careful for the first few weeks. I couldn't really scrub my head hard or leave my arms up for too long. Also, there is NO vacuuming. Besides, a spinal patient is not supposed to vacuum anyway according to my neurosurgeon. but you are not to vacuum during your scs healing period. actually you never should. you never should rake either according to my neuro. gets you out of some nasty jobs, huh? lol

my doc put my 'generator' right above the waist on the side. that way my pants didn't rub on it and nothing pushed/pulled when i sat down. if it's on your butt, your pants are always going to be pushing on it. that would be quite uncomfortable. it turned out for me that i didn't have enough fat content, so mine tried to work itself out of me, and i ended up having to have it taken out after 6 months. ick. besides, during the trial, they gave me so many limitations that i didn't get a good assessment of pain relief. i thought it was covering the pain great, but of course i would cause they wouldn't let me do anything. :rolleyes: after i got the permanent one, i went on about my normal routine, and thought i was gonna die! :eek: i had it reprogrammed many times to no avail, so make sure you give it a good going during your trial. go about your normal routine to make sure it covers your pain.

the incision for the leads is very small. i can't even see it now. but the incision for the 'generator' is about 4-5 inches long on my side and is still very apparent. as i said, that was about 12 years ago. the implant site wasn't really what i would call painful, but it was just weird feeling. now that they've taken it out i have scar tissue there and where the leads were, and it IS painful now. having it taken out is much worse than having it put in. the surgery to have it put in is a cinch. no problem at all. also, when you have the unit on, you will feel it 'zapping' you much more when you lean back against something. for instance, if you lean back against the leads, you'll feel alot of stimulation and you may have to turn the unit down. you'll learn how to work it as you go. that's one thing that surprised me, and they didn't tell me about it. lol

if i can answer any other questions, let me know, i'll try to check in again. hugs, lee

I had two trials. When on the lumbar trial, I was able to bend over the kitchen sink and wash my hair and then sponge bath. For the cervical trial, I had to bite the bullet and not was my hair for the whole week. I washed my hair the morning before the procedure and then when hair got looking not so good, started wearing a ballcap when going outside. The let up in the pain felt so good that I really didn't care how my hair looked, I was just so thankful to get the pain relief.

Hi Jami
 

Welcome to the "Bionic Butt-Club" :)

What is your original pain condition if I may ask?
Insurance companies can play some tricky games. Even if you do wait till the next year and change insurance, you could possibly get denied as "pre-existing condition".
The most important part of the 'Red Tape' is getting the doctor to send your insurance a letter of 'medical necessity'.... and then once approved, get it in writing. I'm not sure regarding the Medicare "DME" issue.....Medicare has made so many changes lately that I would talk directly to a Medicare Rep (and get THAT in writing :) )

And yes, you made a good judgement call regarding the cost in the longrun....(Even if you DO have to make pymts up to $5K, assuming your SCS proves successful) My pain meds were running me almost $1k a MONTH.

Like you, i spent 100's of hours online reading up on this procedure and even at that, when it came down to the nitty gritty, a few 'surprises' were pulled on me (such as battery placement....and in another's case they completely changed the manufacturer without his knowledge/consent......you know who you are M56PJ :) ) Nothing to fret about, just saying, be open to variables.

All your Q's are good ones, these things are important for us to have 'peace' with......somehow it all ends up working out. Sponge baths, plenty of powder......you'll get thru it. Just read thru alot of the threads and posts here and it'll paint a pretty clear picture. Listen to your body.

It's good to have you on board!
Stick around so we can learn from YOU as well!
It's a TEAM effort, no doubt about that!

Rae
:hug:

When I had my trial i really did not have an incision the lead was inserted through and epidural needle thingy. So all I had was a small like hole that the things came out of and then a stitch to hold it in place. While the trial was in I would sponge bath and we bought some of the waterless shampoo so my husband could wash it using that and use a washcloth to get it out. It did not get it as clean as washing but made it bearable and not so oily. When I went in for the permanent I had to stay one night at the hospital. I had two incisions one about 4-5 inches long where the battery was and one straight up my spine about 8inches long. When looking at an xray of my back you can see the lead and two rectangle things near the top. I have never asked what them are. When they first put the battery in they put it near my bra line on the right side and it was awful. Every time I would try and sit back it would hurt so we moved it right above the pant line. That was a great place until I fell and ripped it loose. I dont think that happens to many people but of course I would be the one in a million. They went in an repaired it but later that month I had to have it removed so the side could heal up better and not be inflammed. I will get my battery back later this year. After the surgery you need at least two good weeks of total rest no work or house work. After the first couple weeks I was able to start moving around alitte but had to be careful and no heavy lifting or bending. After the 6-8 weeks if your feeling up to it they will start letting you go back to being more of your normal life but just be careful. If you have any more questions please feel free to ask. We will be glad to answer.
Angela

I just want to thank everyone for taking the time to respond. This seems to be the most helpful site out of all the ones I have found. It's rare to hear any good stories about the outcome of the scs. All it seems one can find is the negative (which I realize happen). I am very realistic and know that it can go either way.

Here is my story:

Five years ago, I was playing in a softball tournament one weekend. It rained almost the whole time. I ended up with walking pneumonia a few days later. I literally coughed so hard one night that when I went to get up the next morning, I hit the floor in the most excrutiating pain I had ever felt. They thought I had just pulled a muscle but it turned out I had two ruptured discs. They did a discetomy that didn't work and caused the discs to completely blow out. I did physical therapy and injections trying not to have another surgery because I was terrified of back surgery and the horror stories. This went on for several months until my foot and leg went numb. My neurologist said you can do two things, lose the use of your leg or have surgery to repair the discs because you are risking permanent nerve damage. I did the surgery in Feb. 2006 but ended up with nerve damage anyway. I felt GREAT at first but it wasn't long that it made a turn for the worse again. Scar tissue built up quickly and embedded the nerves at the L4/L5 and L5/S1 levels. Lucky me that I am one who's body produces scar tissue. THEN.....

I had mentioned to my doc about having constant burning pain in my shoulder and my fingers going on for a very long time. I said was that just the stress from my job? He said lets do an MRI just to see. Welllll he got the results and said oh my, your neck is worse than your back ever thought about being. I had 3 ruptured discs that had to be repaired quick. I had a 3 level fusion on my neck a week later.

Fast forward 4 years, NOTHING has helped the pain. I have failed back/neck syndrome, and DDD. I have been through multiple shots, physical therapy, MRI's etc and there isn't much that can be done. They finally told me this is what I am going to deal with the rest of my life. Two years ago, my pain doc wanted me to have the SCS done, I went through the evaluation and was trying to get set up but it took too long. My LTD and company insurance ran out. I was approved for SS disability a few months later but in between that time, my daughter had a baby girl who was born with down syndrome and heart defects. I had to help with her and go through her surgery so my procedure was put on hold. She is now two years old and just a big ray of sunshine in our lives!

The pain is so bad now that I have no life. I can't even walk around the store without barely making it to my car and being down for two days under the influence of pain meds. I have two grandchildren that I can't play with and do things like I want. I told my doc enough if enough, I am READY. If I can get off some of these meds and reduce the pain even 25%, I will take it.

So here I am, scheduled for the evaluation, trying to get the trial done with big hopes that it will hep me regain some of my life to do the permanent implant. I hope you guys don't mind if I bug you to death with questions as I think of them lol

Jami
 

You could never 'bug' us enough no matter HOW hard you try!! :o
We are just one big happy family here in our own li'l world http://dl.glitter-graphics.net/pub/5...gumtwy2sum.gif
And YES, like you, I had searched the cyber world endlessly... It was easy to find web sites with info on the SCS but i could NOT find any legitimate ones with discussion from the patient's point of view!! The few I did find had a lot of negativity and/or the members seemed to 'bicker' amongst themselves....but then when I happened upon NT here, I was instantly drawn in. At that time, this SCS/Pain Pump forum had not been created yet, so i frequented the "Chronic Pain", Peripheral Neuropathy, and RSD sections. (by the way, if you still have that 'burning' neuropathy pain, I would highly recommend hopping over there to the PN forum. It is very active and FULL of endless knowledge. I jump back and forth between this forum and PN, and RSD) Anyway, I soon realized that people were coming to this forum by the bucketloads asking about the SCS. It became evident that having a seperate forum specific to this discussion would be very beneficial.

We're glad you've happened upon us and hope you stick around to share your experience. We continue to learn and grow on a daily basis and the neatest thing about this is that it's 'real people' talk. Not business propaganda, no sales pitches.....just real people who are fighting to get their lives back, just like you....and from what you've shared, you've got aLOT to fight for! So, thank you for sharing, and you'll be amazed at the comradere and true loving support you'll get here.
We help each other as we go thru the gammet of emotions that chronic pain conditions bring.

Isn't it 'amazing' some of the things we are told when we reach out for medical help with a pain condition ? 'stress'......'menopause'.....'it's all in your head'......:rolleyes:. THEN, once it does become clear that there is a 'real' situation going on, it can be difficult to find a Dr willing to make the commitment for the long-haul, without being 'passed off' to the 'next' guy.
Honestly, (and with all due respect to the medical personnel) I've learned MORE from this forum than I did from ALL the Dr's involved in my 5yr battle.

You certainly have seen your share of struggles, but I can sense you are determined and ready to get your life back! Chronic pain is such a rip-off.

I'm sure you've probably read thru the threads and topics involved in the course of getting this procedure. There's a good thread somewhere down the list here regarding the pyche eval. It's all standard procedure and it appears you've got a good grasp on what's ahead.
And yes, there ARE stories here of struggles and failed attempts, but there is a wide range of folks here testifying that the SCS or Pain Pump has helped tremendously. There are no two stories alike.

From what I've seen, especially here lately, is that the hardest part of the process is the WAITING. Once the trial procedure proved successful, it is VERY hard to have to wait for the permanent, especially after having had a taste of what a painfree life is like!

Welcome aboard, my friend
Rae
:hug: :grouphug:

Dear Jami
 

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:

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
 

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.

Questions
 

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
 

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:

Withdrawal
 

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 :)

Hi all, i have being redirected to this topic and have read all your interesting posts. I have a friend who went through all the presurgery procedures before the implantation of a SCS here in Ireland only to find out that the the health insurance co. wont cover the cost of the SSC device itself [only the implantation].Here in Ireland, SCS cost varies between $20,000 and $40,000.I would like to know the cost in America.It is for the L4 and leg area. many thanks.

Good to see you again, Chiron!
 

Hmmmm :Ponder: That's a good question.....
It's hard to give you a 'straight' answer on that, beings we come from two completely different 'worlds' with all this healthcare mumbo jumbo :)
Part of it depends on HOW the billing is being done.......is it in a 'Freestanding Facility' or is it in a hospital setting under a specific Dr/Anesthesiologist's care? There are so many variants it really is hard to say what the actual cost of the unit itself is. (Example: does it include the cost of the trial procedure .... ?) Plus there are 3 or 4 major companies that independently manufacture these things.
But, in trying to gestimate the actual cost of the actual unit, after disecting our multi-faceted medical bill :) , the 20K to 40K range sounds probably feasible. It would probably be more accurate to go direct to the website of the manufacturer to pin down a more accurate estimate ....ESPECIALLY if this is going to be out-of-pocket.....ouch...
I don't know how healthcare is overseen in your neck of the woods, but here in the states, a hospital can charge you $25 bucks for @#$%^ tissue to blow your NOSE in!!! :eek:
........and we wonder why........:o....well, i better not go there.

It's good to hear from you again!!
:grouphug:

Well my psych evaluation is complete. I was in and out of the office in 45 minutes. He was really a nice guy. He did say I am depressed. DUH, YA THINK? lol I laughed and said if you have chronic pain that affects every aspect of your life and it doesn't depress you, I would bow down to that person if I could bend lol He smiled and agreed. I did discuss what Cymbalta did to me (made me deathly ill for 2 days and nauseous for another 5 days before I said hell with this) since that is also prescribed for depression. He is going to recommend amitriptyline to my doc instead. He also felt that will help me sleep better at night than Ambien. I can only hope so. He told me if I was still feeling depressed after I recovered from the implant procedure, please come see him. Sure, I will get right on that as soon as he gets a polka dotted elephant for me to talk to!

Anyway, he is going to make sure the report/approval is in my pain docs hand before my appt next Tuesday. I think from there, they send that in to the insurance company for pre-approval? The trial isn't scheduled until they get the approval, right? Or is all of this done for the permanent if the trial works?

Hi Hugg724,iwas on AMITRIP for awhile and the side effects were awful but in saying that,dont ignore your drs. advice.The operative word is trip,i went on mindbending trip with them and when i went off them i went cold turkey. If you suddenly starting having unrealality exerpiences, then see your doctor again.Each one to their own, i suppose. It might not affect you. regards

Hey Hugg!
 

:rolleyes: I love your outlook.......(i thought the polka dot elephant was supposed to be included with our care-package) :)

Yeah, i think it's all protocol for the permanent implant.....
The psyche eval, as you know, is mainly to rule out a couple of things....
such as a somatoform disorder? or to make sure you aren't a dependent drug-crazed junkie expecting the SCS to solve all of the answers to the universe. ....... Mine was doing fine, until 'they' decided PLUTO is no longer an official planet! :eek: Now my programs are all messed up!! :rolleyes:.....
....and i won't EVEN make mention of what this has done to 'URANUS' ?!
omg, it's obvious i've overdone the coffey bit again this morning.

One piece of red tape at a time...... :hug:

:holysheep::Bow::blush::ROTFLMAO::ROTFLMAO::ROTFLM AO:

The Tape
 

Ahhh...... funny sister..... you eat too many grasshoppers perhaps.... for you see, it is the TAPE which holds the universe together. This is why duct tape so popular.....

Seriously, you are on point with the psych eval issue. So Hugg, the psych eval is supposed to be almost the last step to the waiting game for the insurance folks to contemplate approval of the procedure, Once your doc receives the psych eval report they must dictate their recommendation to the insurance company accompanied with the psych eval. Then the insurance folks get it all with your file and think it over. Plan on a bit of a wait followed by a great surprise when your doc's office staff calls with the insurance result. My doc, for instance, is so conservative on his recommendations that he has a high success rate at receiving insurance approval. The approval did come and we were on calendar for that sweet appointment to go to an outpatient surgery center for Trial implant!

Praying you get this soon! You might want to leave the elephant in the car when you show up for your Trial. The waiting room may be fairly small........

You are almost there!
:hug:z
Mark56 PJ :)

unsure
 

:confused: i have read a lot about SCS I am in trial now I am so unsure the trail is very postive, but I am concern about permement installation because of all the negative coments, have not seen a lot of postive comnent about SCS thanks for the leap of faith still wondering if I am gonna do it

Hey Charles!
 

Hi there Charles- If there are questions more specific to your conundrum other than that you are undecided at this moment, I am sure we would gladly weigh in on them! Lots of good drive space going to waste here unless we reach out to help one another!

Until I see your posts again,
Mark56 :)

Hey there Charles!
 

You've come to a great place for information and support!
Maybe it would be a good idea for you to start a new thread and share a bit more about yourself, as far as how you've come to the place of getting the SCS trial....what type of pain are you dealing with? I think I saw in one of your posts you mentioned your left leg? Am I on the right track? :)

So, if you'd start a new thread, that'd be great and that way all your info will be in one place and we'll all jump aboard and you'll get tons of good support!
To start a new thread (as opposed to tagging posts on existing threads), just hit the 'new thread' button at the top left side of the screen and title it however you want!

I also sent you a 'visitor message' on your home page :)
Just ask if you need help in getting around!

We'll all have lots to share!

Caring
Rae
:hug:

I appreciate this thread....reading through it, I found so many of the same questions I've had, and some great answers. Gave me more to think about, regarding the SCS, but I always feel that the more info I have, the better prepared I can be to make a wise decision! Prayer certainly doesn't hurt, either! :+)

percey4
 

Did Social Security Disability pay for the unit and dr. bills?