dear straker

I'M HAVE MY SCS TRIAL ON MONDAY, I HAVE HAD CHRONIC PAIN
FOR THREE YEAR, DONE ALL THE USUAL STUFF, MY NS THOUGHT
THIS WOULD HELP. YOU HAVE TO HAVE A PYSCH EVALUATION FOR
THE INSURANCE, WHICH IS A PIECE OF CAKE. IT ONLY TOOK A WEEK
TO APPROVED BY BLUE SHIELD, WHICH SURPRISED ME, I THOUGHT
IT WULD TAKE LONGER. I HAVE HEARD GOOD THINGS ABOUT SCS,
THOUGH I KNOW IT SOMETIMES WONT WORK ON SOME PEOPLE. I WILL
KEEP YOU POSTED. I SHOULD BE ABLE TO POST MONDAY NITE
HAVE A GOOD WEEKEND
CINDI

thanks hun i am in the uk so insurance no problem! hope you have a good outcome re your trail.and i hope that you are not in too much pain afterwards ...thanks again tony

Hi Tony~
I have had my scs for about three months now and feel like it was one of the best decisions I have ever made. I have had back and leg pain for over ten years. The feeling of the stimulation is... strange, but it really helps! It took some time to get used to. A video I watched about the scs says it feels like a gentle message... to me it doesn't feel like a gentle message, but rather a muscle stimulator-from the inside. Hopefully you have a good PM doctor because I feel that it is SO important to the success of this thing!! I'm not going to say that I am pain free now, but I will say that I'm able to do so many more things now than I was able to do before.
Good luck!

i Tony~
I live in the US in a pretty small Texas town... My PM doc is the absolute BEST! As time has passed, I have become more accustomed to the feeling of the stimulation. I wasn't sure I could get ever get used to it, but each day I would turn up the stimulation level a smidge and it made it easier to get used to. I am still taking pain meds, but seem to have much better coverage than before. Recently I had to make a long trip to a big hospital (six hour drive) with my dad- he had to have quad bypass surgery- and I only stopped once during the drive. We spent two weeks at the hospital for surgery and recovery, and the only time I had trouble with my pain was when I had to help my dad get out of bed or back in to bed. I never would have been able to do this BEFORE the implant. I had high hopes that I would be able to get off the pain meds, but it looks like for now I'll continue to take them. My activity level has increased so much that I have a tendency to over do it. It's almost like being locked up for ten years and then finally being released! I felt like I needed to get out and do things that I couldn't do before.
I would so recommend the scs to anyone that is thinking about getting one. Feel free to send me a private message ANY time.I'll keep up with your e-mail address too. Good luck!

I can truly understand what you are going through and honestly say that my SCS probably saved my life. Living with chronic pain is very challenging and stressful at times.

The thought of living another 20-30 years longer with things getting worse is not acceptable. You need to take charge of your future, like I did, and try every alternative.

My SCS gives me the temporary relief I need to get up in the morning and continue to function in my job. I am too young and unprepared for retirement so I need to work full time. Without my SCS that would be impossible especially if taking drugs was the alternative.

I strongly encourage the trial. If that works out jump right in and get the SCS installed. After the initial brake in period of a few months you will be very happy you did.

Jerry

I had a Medtronic SCS implanted 1 year ago this week and it saved my sanity! After 4 failed back surgeries (including fusion), and a neurosurgeon 'acidentally' chopping up the nerve roots to my left leg, I lived in constant agony. I couldn't sit, walk, lay down, clean, cook, sleep, drive, without pain. Everything was painful. I am 35 years old and a stay at home mom to 2 young girls - I can't exactly take 'time off'. I had the SCS trial done and cried when they took it out because I loved it so much!

Although I continued on serious pain medication for several months after the implant, I have gradually weaned off them and am now on NOTHING for pain.

I would warn anyone considering it that it is not a cure. Do not expect to be pain free. (It took care of about 60% of my pain.) It's like having a headache instead of a migraine - at least you can finally function. And you have to charge it, play with the remote to get the settings right, take extra time at the airport, sit with Medtronics rep. while they help you get the right stimulation in the right areas. But when you live with chronic pain for any amount of time, you will agree it's worth it to get relief!!!

i am still in agony carnt sleep /yaking large amounts of oxycodone but i have to wait 12 weeks befor the scs pain doc can see me! what am i going to do befor that ?? turn the pain off!!...i am in heel right now i never thought things would get this bad..but all i can do is wait .thanks again love to you all tony xx

It's been a very long wait for me on several medical issues. Things are finally coming together now. I have my surgery date for SCS implant (did trial) Aug 12.

I know it' frustrating! If you need some information or just want to talk to someone who has gone through it, we all are here for you. You are also welcome to PM me if you like.

I currently take oxycodone and have the Fentanyl Patch, still in pain though.

Wishing you pain free days or even an hour!
O-

hi love the tattoo!!.is it yours?..i am glad that you are having less pain and can do things that you have not done for years..due to your pain..i am goint to see about having a scs within the next 12 weeks.i just hope that i am a suitable paitiant for one ..as i am in a right state at the moment .i am unable to do the most simplest of things with out being in teribal pain..i feel very old!!.all i do is lay in my recliner and take pain killers..not much of a life for a 42 year old married man..sorry to here about your husband{my wife lost her father by suicide 7 years ago so we know a little about that kind of pain too}..thanks for the advice you can always email me if you want a private conversation tony

I posted a link to another thread about SCS...I know C personally , she is one of my best friends and she is doing great with hers...better than she even thought she would do. Anyway , I thought that maybe you could hook up with C to ask questions , she is great at helping others out. I hope this helps....please keep us posted as to what you decide to do and how you are doing.....take care....Miki

http://www.spine-health.com/forum/pain-management/those-scs-do-you-ever-...

I'm in London and was told yesterday that after epidural injections and pulsed radio frequency that didn't work that my options were either a third surgery or a spinal cord stimulator. My consultant told me that it wasn't curative that it may help for a short term but I'm sent to another surgeon for a review to decide what's best.

The thoughts of either scares me and I just don't know if I like the idea of a SCS but I really don't want a third op either. I've been on different meds which haven't really worked and have left me feeling crap.

Are you having a SCS?

Cx

it looks like you and i are at the same point in time regarding scs..i too have had 2 ops both failed .the last one has made me a cripple! the pain from my lower back is hell and before the op i only had pain in one leg now i have pain in boths legs!.on the 19 aug 08 i am having an epidural ..never had one before hope it works because i carnt go on as i am .i am waiting for an appt to see weather i would be suitable for an scs.i an having second thought though because my pain is a 50/50spilt back/leg i have been told that a scs wil not do anything for back ache.some ppl say they have a flare up regarding pain ..i dont! i have pain 24/7 it never goes away.only the oxycodone takes the top of it.but i am taking so many of them at the moment.just to stay on top of the pain..i dont know what to do .i have never been so ill in all my life.i spend all day on my recliner not because i am lazy its because i am in so much pain..i hate it!! i will shut up now and try to get my 3 hours sleep before the pain team stick me in the back with a bloody big needle!!.good luck to me STRAKER

Before I had my second Fusion at L5/S1 I went to see a Chronic Pain Physician about this device and he suggested this to me . I later found out I had fractured the First Fusion and set about getting it fixed . The Sciatic Pain however has not eased and I am in a lot of Pain . I am very sensitive to any medication and this makes my positoion very delicate. I was given all the information , including a video on this device and I only read a little and did not watch the Video . Can't find it , looked everywhere. You have helped me understand what this device is all about and I hope soon that this opportunity comes my way again . This Pain is so hard to endure . Good luck and I hope anyone who is about to have one installed the greatest of success. It sounds awesome !

I know that the stimulator is quite expensive, but, a little relief from agonizing pain is better than no relief from agonizing pain. I have had my scs since March and it has helped me in more ways than I even realize. My dad had to have bypass surgery in June and I spent 2 weeks at the hospital with him, after driving 6 hrs to be there, and slept on these chairs that pulled out into a cot. I NEVER would have been able to do this BEFORE I had got the scs. I wouldn't have even been able to make the drive. Does it take all my pain away? NO, but it does ease it enough to allow me to do things that I wasn't getting to do. I have sciatica and back pain too. The scs helps with the sciatica A LOT, the back pain- not as much. I was afraid that my doc would stop treating me with meds after I got the scs, but he didn't. He realizes that I'm still in a lot of pain and he wants to help as much as possible, Thank Goodness!
Good luck with your next treatment and with your decision about the scs. Oh yeah, I don't know where it's posted on this site (ask a moderator) but I watched a video that someone had posted about the implant surgery. If you can find it, watch it. I thought it was VERY helpful!

Arising this morning in Austalia , tears to think of another day with this reched agony.The sensitivity I have to medication is my greatest obstacle and I have been suggested as a candidate to have this implant. I have had this pain for three solid years now and two massive lots of Surgery both Anterior and Posterior, I also have an Artificial Disc at L4 to. Anyway I spent all night trying to find the information pack and video but I guess I threw it out thinking my last Surgery would fix my problem. Wishful thinking , damage done I think . Ok , will look for Video and I have to go to the Doctor tomorrow so will talk things over with him. Can't go on like this. Even when I am on heavy Meds I feel like I have a rod stuck up my left Butt Cheek.Living with Hope always and Thanks so much for your reply Terri

Hope you have success and I will be watching to see how you are doing . Thoughts are with you. Anything is worth a try when all other has failed. There is no quality of life in this pain.All to gain and nothing to lose , bar the pain.

I had the trail stim put in a week ago. I go to have it taken out today. I do feel like it gives me a considerable amount of pain relief. I have been able to DRASTICALLY reduce my pain meds. I guess you get used to the pulsing sensation. Mine is in my neck. However, when I turn it on it feels like it goes down to my leg. I don't get the stimulation feeling, I just get kind of a knee jerk reflex reaction and I seem to walk a little bit clumsily. Also since it is in the cervical region, I have a lot of variance in the strength of the stim depending on how my head, neck or body is positioned. Has anyone had a stim implanted in their neck? Medtronic has just came out with a new RestoreUltra that is rechargeable and very small (2 1/2 in diameter and only 9mm thick). I was glad to read where someone responded to a post about their friend having a stim transmitter about the size of a cigarette box and how uncomfortable that was. The response was that their's was really rather small, hardly noticable at all and not uncomfortable. That was one of my concerns.

Can someone tell me what the drawbacks have been for them with the stim? I feel a little disoreinted, unfocused and clumsy. Does this go away?

Any input will be greatly appreciated!!

M

Hi M

Welcome to Spine Health. I have a Medtronic Restore Ultra in my C-spine. Just keep in mind that the trial stim leads are only tacked in at the skin, so they move around ALOT! Once the permanent leads are placed, they are a bit better. Since your neck moves so much more than any other part of your spine, it is very difficult to get a constant stim like many do with the ones placed lower.

C-spine stimulators will stim down to your toes, depending on which contacts are activated on the leads.

I go around with my butt, legs and feet buzzing all day long and have no problem with clumsiness. In the morning or when I turn it up higher, initally I get the feeling I'm being cut off at the knee. Not painful cut off, just majorly restricted. It eases up after a few minutes.

How soon until you get your permanent implant?

Please feel free to PM me or email me at haglandc@toriitraining.com

"C"

I have read so many good posts in regards to this form of pain mgmt. I had an in depth interview with the shrink, who also works for Medtronics. I am scheduled for 8:30. From what I understand the procedure last 3 hours. I will have anesthesia but will be awake when the leads are attached. For those of you who have had this procedure, how was your trial? Were you able to drive, shower, do laundry and other "normal" things during the trial?

Any info would be greatly appreciated.

Karen

Karen,

I was unable to shower during the trial with the exception of my lower half of my body and a hand held shower. Needed help to since I had external generator. Fortunately my trial was only 3 days. Here's a photo of my trial scs. Mine is a c-spine. The box is a connector.

Totally cool that you posted that picture! I'm sure others will be thankful to see it! I had absolutely had no idea what to expect. Hope you're feeling well!

This is a post from the old site that contains a link to a video of an scs implant. I watched it and found it very helpful and extremely interesting. Anyone considering getting an scs or getting one for sure should take a look at it... If someone wants to replace the links in here to one that you can just click on instead of copy and paste, please feel free to do so!!

Chronic Pain Therapy: Spinal Cord Stimulation - Video
Beth Israel Offers Inside Look at Chronic Pain Therapy OR-Live.com webcast February 6, 2008 at 6:00 PM From Beth Israel Medical Center, New York, NY As more and more Americans are working harder, living longer and looking to remain active, chronic pain has become a main focus in today's world of pain ...

"The ideal candidate for spinal cord stimulation is someone who suffers from chronic pain who has not responded to primary medications, therapies or surgery," says Dr. Sheu. "Once evaluated by a qualified pain specialist, an appropriate patient can undergo an outpatient ‘trial' to experience spinal cord stimulation for themselves and determine if the relief is significant enough to proceed to a longer-lasting treatment".

With spinal cord stimulation, the electrical impulses are delivered through a lead, a specialized, insulated wire that is implanted within the spinal canal. These electrical impulses block the pain signal traveling to the brain, providing lasting pain relief for the patient.

The Spinal Cord Stimulator implant surgery is performed by Dr. Robert Sheu, Director of the Pain Division in the Department of Pain Medicine and Palliative Care at Beth Israel Medical Center.

A Medtronic RestoredAdvance Spinal Cord Stimulator is implanted in the patient.

The video starts off interviewing two females who received the Spinal Cord Stimulator.

The video has footage of the Spinal Cord Stimulator surgery.

The patient is awake during the implant surgery.

http://www.or-live.com/bethisrael/1867/#

The video time is approximately an hour.

http://www.or-live.com/bethisrael/1867/ … h/rnh.cfm?

Terrie, thanks for posting this. Spine-Health maintains a vast library of various videos covering conditions, treatments and much more.

Here is a link to a video for Spinal Cord Stimulator Implant:
SCS Implant

I was asked by a couple folks if I could post more photos of the SCS. Here's 2 photos taken just a couple hours after the surgery implanting the permanent system.

This first one shows the trial stim gone and just some covered up staples between my shoulders.

This next one shows the entire system. The pocket on my right hip just above the glute which contains the battery/generator and if you look you can see the swelling all along the right side of my back where the extension wires were run up to the leads in my neck.

I want to wish everyone good luck with their permanent SCS and for those still waiting on a trial, hang in there!!!

"C"

It looks like your surgical site is gonna look pretty good! Mine looks like a zipper had been sewn in and then removed! I think maybe I had a little bit of trouble healing up because I wouldn't quit touching it! Being a nurse, I knew better, but just couldn't make myself keep my hands off of it! The itching from the the staples, I think! Good luck with yours!!!

Hahaha a sewn in zipper. Same here. Looks like you should be able to unzip it and pull the generator out. I had the staples in for 14 days and after about 8 or 9 days they got loose so of course I had to mess with them. I stretched things a bit getting up and down out of certain chairs or in and out of the car. My tattoo kind of hides the one between my shoulders well.

I tried not to touch the pocket itself, because I read that messing with it too much could cause the generator to flip inside the pocket, which of course would mean further surgery. Living 7658 miles away from my surgeon is a great motivator to "leave things alone".

Have a great day.

"C"

HA HA HA My zipper is bigger than your zipper

I guess I better stop playing with my pocket.

Has anyone named their new side kick? Isn't it cool that it works even though we all have different stuff going on.

To all others, I hope the trial works for you!
O-

I call my remote: Sparkey! Sometimes I tell my husband to hand me my 'shocker', but it's name is Sparkey!

Oriah- I am so glad you finally got your scs turned on! I can't imagine having it in there and having to wait almost two weeks to have the thing turned on! My was turned on while it was being implanted and I haven't turned it off since then!

When I had my staples in and I was feeling them, it felt like one of them was loose, so I messed with it and messed with it and then I pulled it out! VERY PAINFUL! I don't recommend anyone trying this themselves. Self removal of staples leads to... OUCH that hurts like the dickens!!!

All this info is so helpful. I am being referred to a PM for evaluation of SCS. I don't even have the appointment yet but I am already nervous just on the principle that I have been through 9 years of this with no luck so far. Can you provide any more details on this psych eval? Why is it so long? I have never gone to a psych before. (My problem is supposedly related to the S1 nerve; chronic pain from left butt through left leg). The only thing I have to help right now is percocet and they don't do much. Thanks!

Don't sweat the psych eval! It's not as big of a deal as you are probably making out to be in your mind. I was totally scared to death to go have it done. I thought they would figure out I was crazy! Basically what it's about is to make sure you don't have any unrealistic expectations about the outcome of the stimulator and that you have a good support system put in place. The guy I went to see asked me the necessary questions, but mostly we just chatted. They are very sneaky that way! (just kidding) The questionnaires kinda long but I thought the questions were kinda silly and repetitive, but I guess they get out of it what they need to. The appointment didn't take me as long s I was told, but I think they just want to allow for enough time to answer the questionnaire. Really, it's not a big deal. Just relax and go in there with an open mind! Good luck!

PS- Welcome to the forum!!

My experience was very informative. The psych specialized in pain management. Not only was he able to my questions regarding the procedure but directed to me to a monthly pain management group. I would love to see him on a regular basis, but he no longer accepts new patients.

Karen

First of all, thank you for your response to my questions. "C" - the pictures were a big help. My back looked exactly like yours with the exception of a massive amount of bandages and tape. I didn't realize how much relief the stim gave me until it was taken out. Like mcobb, I was sore were the leads were put in. I was so careful about doing anything during the trial. It was confusing when asked if I was able to do more during the trial. How do you do more when the instructions were don't lift, stretch, reach etc.... It was also cumbersome. I usually sleep on my back with a cervical pillow and as you can see from "C"'s photo that position was uncomfortable. I also got the trial stim right before the Labor day holiday because of that the reps from ANS were out of town. I would have like to have had a little more guidance. The ANS rep was new, she had previously worked with Medtronics. Has anyone had any experience with ANS?

I got it taken out last Tuesday. For some reason BCBS only approved the trial. Now I have to wait for the doctor's office to send paperwork to BCBS for permanent stim approval. As of today NOTHING as been submitted.

My meds are not controlling the pain. I was hoping to hold off increasing or changing them but at this rate, it will probably be October. I take three 40mg Opana ER and up to six 4mg Hydrmorphone. In addition to 3 1mg Xanax, two Soma250mg, Cybalta and Ambien CR. That seems like a lot of medication.

Most excellent!!! I'm glad that the trial went well for you. I'm glad that the pictures helped out. I will keep my fingers and toes crossed that you get approved for a permanent SCS soon!

The cool part is that YOU KNOW NOW that there is relief possible for you!!! So hold on to that thought and trudge forward through the day.

kstarr

Like Terri says, don't sweat the psych eval. Welcome to Spine Health too!

"C"

I had the SCS trial earlier this year before my fusion 3 months ago. It was offered to me around 6 months after my microdiscectomy didn't help me, and I was surprised because it's usually offered after all else fails. I had all the ESI's allowed and had just started on Fentanyl patches.
The next morning after the SCS trial, I was terribly sick. I had a terrible migraine-like headache that worsened when I slightly raised my head. I did turn the unit on; it was painful to lay on my back and it didn't feel like no massage to me. It was very intense in the leg mostly, and in the bottom of my foot. I just didn't like how it felt for the brief time I had it on. When I woke up sick, I turned it off, not knowing what was wrong with me.
I was sent to the ER and had a blood patch done and was given a spinal tap which irritated more the hell out of my sciatica. I felt better at first, but when I got home, same thing again. Headache, nausea, projectile vomiting, and hearing impairment. I was losing more spinal fluid.
Went back to ER and had to have the leads pulled out and another blood patch. When I got home, I threw up, and still had a bad headache. I was told to just take pain pills for it until it was gone. It took 7 more days to rid myself compeletly. I also had to deal with dizziness and felt like I'd been out to sea for a year without setting foot on land.
I don't mean to scare no one. There's a lot of good outcomes here, but I felt compelled to tell my story. And to top things off, I did have a spinal headache post surgically this year, but this time it went away fast. I was offered another try if the fusion doesn't take the pain away adequately. I'm scared. I'd rather pay copays than 75,000. Nothing in this life is fully guaranteed.

JUST FOUND OUT THAT BS APPROVED MY PERM SCS, NOW WAITING
FOR A SURGERY DATE. I SEEMS LIKE FOREVER SINCE MY TRIAL.
I WILL KEEP YOU POSTED ON THE SURGERY DATE
CINDI

Very cool news!