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Spinal Cord Stimulator Experience?

Started by Randy W on 10/21/2012 8:31am

Hello, Everyone,

After failed lumbar surgery and a series of ineffective post-op epidurals, my pain level is high enough to require daily narcotic medication. As you all understand, it has effected every aspect of my life.

Has anyone had an experience with Spincal Cord Stimulators? (SCS) My surgeon told me he has only seen 2 or 3 cases like mine out of a thousand in which the pain increases dramatically after surgery. He says further surgery will not help as the nerve root at l-5 S-1 is so damaged. So the SCS seems to be my only option.

Any input?

Thanks.

Randy

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16 Responses

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Randy, I just had one put in on the Oct 11. My surgeon was (i think) real bad in Syracuse. I had to have it done at home for programing.I couldn`t move my arms for three days. The first week was hell for me. But I`m on Oxycottin 30s 6 aday and Oxycodone 15s 6 aday so pain above nomal is hard to manage. The trial worked well on me, that`s real easy to try. They put a few needles on your spine. I was on half of my meds on the trial. Randy at this point this is where I`m at. Sam

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Now Guy`s , From having the SCS put in I ended up getting a real bad infection. It`s very hard to treat because of having the SCS in there.I had a emergeny operation I was in the hospital for 5 days .Now I have in home anibiotic I have to give myself Total of 5hrs aday. They call it a infusion (intervinus) I have a pick line in my arm that go`s to my heart. This is for 30 days. Maybe I pushed trying to get fixed to far.I have a 25% chance to keep my SCS. This is I think is my last chance of having a Kind Of Nomal life. This infection is just the one of 100 that happen from surgeries. So as you sign the papers as they say it won`t happen to you well it happened to me(presurgery). Sam

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Sam, So sorry to hear about your nightmare experience with your SCS. I had no idea it's so painful. I had a spinal infection after cervical fusion years ago and it was much worse than the operation itself. Please try to stay proactive. There have got to be other ways. Have your tried acupunture? I did, from a very reputable Dr. of neurology from China. I could actually walk without pain for about 2 hours after my first treatment. (then he left on a long vacation!) I know what it's like to be in a narcotic haze all the time. It's all I can do to wake up at 4 or 5, in blazing pain, slowly make my way downstairs, pop a pill and make my coffee. "Is this going to be my life?" I don't have to tell you that it's torture. I'm curious, what is your issue? Failed back syndrome?

After 2 1/2 months post op, I insisted I see my surgeon, that something is wrong. A possible re-herniation? I had to BEG him to get another MRI (since he had written the "definitive" paper saying getting an mri sooner than 6 months post-op could show false positives.) I told him my pain was NOT just nerve damage. I could ACTIVATE the pain by moving my pelvis a fraction up. He finally relented.

I got my results yesterday. Scar tissue has replace my hernated disc in pressing against my nerve. But this time it's twice as bad. So I'm not the only guy on the planet begging for a fusion.

When was your surgery and when was the last time you had an MRI with contrast?

Hang in there.
Randy

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Randy, I`m on OxyContin 30s 5 aday, Mobic 15 1 aday, cybamblta 30mgs 1 aday and Zenaflax 2aday with all this crap my pain level is a 6 on one of my best days.I had a open back L3-4 fusion 7/10. I have had 5 surgeries since because of the fusion.I always said I over fused. I found this surgern in NJ right outside of NYC he has help me a lot. I didn`t go with him on the SCS because I figured I needed some one closer to home to program it. Well we all know I got this bad infection from the OR. I have SCS in and on right now I`m taking 1 30mg oxycontin less 30 aday. It`s winter in Syracuse it helps I will have more to say on SCS soon. Back to my open fusion. Did it help me? Yes I can sit in a chair now. It didn`t help my pain level at all. I was told by my surgeon in syracuse I neened a Lamonecty (2012). The Surgeon in NYC said if I had that surgery I would be in more pain after then I`m in today. That`s what you are which is sad. This doctor waved a 3000$ copay for me on a4700$ surgery. He got paid 1700$ for a 1 hr and ahalf surgery. I never in my life have had anyone do anythg like this for me ever. I had no feeling in my left leg and foot. After better then ever. Just beware all the surgeons will say the same thing to you in your area.Go out of town if your having troubles.

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Sam, It sounds like your experience is getting better. I just had an mri and learned that I have scar tissue binding to the never root where I had my L-5 S-1 laminectomy. The pain is now much worse that when I had my herniated disc. I'm now looking in laser surgery to buzz off the scar tissue. It's an out patient procedure and I've read the benefits are awesome. Another surgery is now out of the question, unless I have a fusion. Another surgery would most likely just add more scar tissue. They can also shoot chemicals into the nerve root area to dissolve the scar tissue. You mentioned surgeons- I can't believe yours waived such a large deductable. Mine is the head of the Emery Spine Center, very well known. I see him this week. I can't imagine he will go for the laser route. He's been pushing me to get the SCS. I'm trying to be very proactive by addressing the cause of my severe leg pain (I'm on crutches, now just about out of a job, in debt--the basic American healthcare nightmare...) not the symptons.

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Hi Randy,
at the time of my 1st surgery I was 38 years old...I was TOO YOUNG to be Disabled...My life before my back injury was AMAZING!! I had a great job, traveled for work and pleasure frequently, I ski, scuba dive, sky-dive, ride a motorcycle. I was outdoors doing something everyday....

My 38th Birthday...Jan.2008 While visiting my Family in New Jersey...I ended up in the ER with "foot-drop"...from Herniated and bulging Discs L4-L5 SI nerve root. I ended up having an Emergency Surgery L4-L5-S1 Laminectomy & Microdiscectomy. The 1st surgery was a success!!!...it was the First time in YEARS I was WITHOUT pain!!!! It was AMAZING..June 2008 later I felt so good I went back to work in Vegas. 3 months later Oct.2008 I ended up flying back to New Jersey to have my 2nd Emergency Laminectomy & Microdiscectomy at the L4-L5 level.

I had suffered with chronic & consistent sciatica pain on the Left-rear side for several years prior to my surgery. Pain Management Doctors in Vegas almost had me "hooked" on Pain Pills. I was getting epidurals 2-3x week, Morphine, Methadone, Opana, Fentanyl, ...you name it...I was on it!!!! I went to work HIGH on Pills to just get through my 8 hour shift as a Casino Bartender.

My Neurosurgeon in New Jersey said he WOULD NOT perform any more surgery on me..."cut me off"... NO MORE Pills!!!! He said my nerves we frayed and damaged beyond repair...He suggested a Trial SCS.

The First Trial SCS with 1 electrical lead was implanted Nov.2008...I worked pretty good. The unit was very "directional" and didn't give the all the coverage that I needed for the areas I was experiencing the most pain. So the Doctor put in a 2nd Trial SCS with a 2nd electrical lead. The 2nd Trial SCS gave me greater coverage than the 1st. Please keep in mind...the SCS didn't take away the ALL the pain, but it helped take the "edge"off. I was still taking 10/325mg of Percocet 4x daily,
150mg of Lyrica 3x day, 350mg of Soma 2x day, 10mg Elavil at bedtime.

about 6 month later I was only taking HALF of the meds prescribed...My SCS as running 24/7
Life was kinda getting back to "normal" I was swimming, walking...riding my motorcycle. The Stim was annoying as hell...but it HELPED

My SCS worked for about 3 1/2 years before one of the Leads moved or slipped out of place.
Workmans Comp got involved...I was injured at work in Las Vegas...I begged to go back to Jersey but my Employer said I had to use a Doctor in Vegas. The Doctor in Vegas decided he was going to do a SCS REVISION and REPLACE the Generator(battery)...This "NEW" SCS was a HUGE FAILURE>>>It doesn't work AT ALL where I need it. The Doctor said I had "TOO MUCH SCAR TISSUE" the signal can't get thru....I think that is a bunch of BS...since me surgery...I have "NEW" Damage to the "good side" the Right side that I depended on. I have ZERO Core Strength
I'm not sure what I'm going to do...The Doctor told me I am "TOO YOUNG & TOO ACTIVE" for this "type" of SCS . The want to take this SCS out and perform MORE SURGERY to implant PERMANENT Paddle Lead...which requires some discs in my Thoracic Spine to be removed.
THAT SURGERY IS MAJOR...and I have less than a 50% chance that it will help my pain.

I still have my non-working SCS in my body...I don't plan on having any more SURGERY...
Since March 2012...At age 44....I am now PERMANENTLY DISABLED

BEFORE YOU DO ANYTHING>>>>Find out which "type" of Lead that plan on using with the SCS
The Medtronics SCS..with 2 Leads by .I had implanted...was "MINOR" out patient surgery. The Medtronics SCS with the Paddle Lead...is MAJOR SURGERY!!!!

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RANDY...WE NEED TO TALK...lol You are in the SAME BOAT I am... I'm one of the 2-3 cases like yours.
I TOOK the RISK...I was desperate to get my "Life Back"... My last SCS was a HUGE FAILURE...
LeesaRs@msn.com

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Hi Randy,,after my first laminrctomy last march,3 mos after the surgery I was labeled w Failed Back Syndrome,,I too have been in 24/7 unbearable pain since,,they R still tryin to convince me to put in the SCS but I refuse,I rather stay on the oral meds and take my chances on this route,, they all say they dont want us to get addicted,But I think of it this way,,if U have diabetes or some other condition that needs medication for the rest of your life,,whats the difference w pain meds,,just bcause their narcotics...I think ill stay w my desision this way,,weather it b meds or narcotics the liver wil get affected..This week I just got my letter of acceptance for disability,I know im still young being 45 but do I have a choice,,NO.All I want to b is comfortable and to b able to bare somewhat of this life, everyone is different,,whatever decision you make can never B wrong,,its just the outcome that we worry about..Good luck to whatever U decide,,its always in gods hands...Rene :)

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I didn`t see your name put where ever you have to say on here. That`s the reason why were here for the good and bad.

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Leesa,

What a heartbreaking story. I'm so sorry what you went through. My surgeons have decided to perform a L-5 S-1 surgery. They say that I may still be in pain after the surgery, but a fusion is the only way to find out. I'm psyched.

Have you ever been to a reputable acupuncturist? I have foot drop and have severe pain from hip to toe. My acupunturist is also a Chinese neurosurgeon who spent time studying in the U.S. He spoke to me and examined me for over an hour. He actually TOUCHED my body, which rarely happens with my other doctors... He then inserted about a dozen of needles along my spine and down my bad leg. He attached electrodes to the needles and shot electricity into my for 30 minutes. I was shocked. After the therapy, I could walk. My pain was GONE. It remained that way for two hours. Unfortunately, it came back with a vengeance after. I guess the stimulation woke up the nerves. The doctor, very thorough and gentle, told me that was normal and that because of my damage, I'd have to go through extensive treatments. YES I said. And then he told me he was going to China for several weeks. AHH! If I weren't going in for my fusion in a few weeks, I'd be seeing him three times per week. I say give it a shot. Randy

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Sam, I highly recommend seeing an acupuncturist. (See my previous post) As for all the meds, I'm so sick of taking them. I get fuzzy and I'm opening a new business. This at a time when I need to be on top of my game. If I had explored EVERY option, like the fusion I'm getting Dec 12th and was still i pain, I would be running to my acupuncturist daily if needed. The trick is to get the right guy.

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Hi Randy,
Sorry to hear you are having more surgery....fusion???? I'll keep my fingers crossed.

It's funny that you mention acupuncture..I go 2-3X a week..and yoga...they seem to be the only things that help. I'm also going to try "water therapy" to regain core strength.

Best of luck. Keep me posted.
Happy Holidays
Leesa

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Merry Christmas to all, I`m going to have a great day today thanks to the SCS .I`m on only half of my Oxycottin now.I don`t take any oxycodone since I had it put in. As long as I only do things like I would before life is good. If I go and lift things and do stuff that makes me real sore at night the pain comes through. I`m still on antibiotics from the OR infection. I don`t know if I can keep the SCS.This has been a life saver for me. If a doctor offers it to you do the trial that part is easy. If it helps you will know in a day if you want one or not. Sam

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Oh Randy,
I did a lot of thinking before writing this because of the following:I injured my back 2x while as an RN-My last day of work was in 7/95 @ 27 y/o. I had so many trigger point & epidural injections that I can count,numerous PT,consults w/so callled specialists in NYC,back & leg brace, & then I met a young pain management/anesthesiologist in 2000 who told me & my hubby(an MD) about this great new device-SCS aka stimulator-after much fighting for approval w/WC I get the approval in 11/00 & had a successful trial & we schedule a stim surgery implant-back then they "stapled the stimulator wires" from the mid neck down to almost my behind & a neurosurgeon did that while the pain Dr & rep installed the generator in my abdomen. It took about maybe 30-40% of my pain down to a tolerable level but I was stilll on my Oxy 40 4-5xdaily-ok here is WHERE MY HORROR STORY COMES IN- slowly i noticed the "tingling" sensation was decreasing,changed batteries in the outside pouch-nada. Back to the pain Dr-the rep & him concur that something is wrong w/the device-NOW I AM SCHEDULE FOR A REDO!! MY 2ND SURGERY DONE ON 2/26/01 was done & a new stimulator & generator was installed-3 months later the same thing happened but NOW THE GENERATOR IS MIGRATED FROM THE POCKET & YOU CAN SEE THE PLASTIC WAFER UNDER MY SKIN-When I went back to the MD & stim rep that concurred that this malfunctioned x 2!! I told them I wanted it out & they told me to see the neurosurgeon-I went back to the neurosurgeon(biggest,best on LI) who told me they only COULD TAKE THE GENERATOR OUT OF MY ABDOMEN & THE LEADS ON MY SPINE ARE PERMANENT & NO ONE IS WILLING TO TAKE THE RISK OF REMOVING THEM OFF MY CORD!!! BECAUSE OF THIS-I CANNOT HAVE ANY MRI'S!!! AIRPORT SCREENINGS ARE ALSO FUN-love getting publicly "felt-up" in front of strangers @ JFK-lol! My hubby has elderly patients that have them installed & he said they DON'T ATTACH TO THE WHOLE SPINAL CORD ANYMORE & 1/2 HIS PTS TAKE THEM OUT OF THEIR BODY DUE no relief---Sorry this is so long,but please get a second opinion,check out their success & failure rates-I wish you good luck w/what ever decision you make & if you have any ?'s or want to talk-I am always here for you. Wishing you a Happy,HEALTHY New Year!!
Bulldogmommy

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I've had lots of surgeries to those areas as well, but I know lots of people who had surgery just like me. I'm scheduled to get the scs trial device this month on the 12th. I don't know where your doctor has been but I've met so many people in physical therapy going through the same things I'm going through after all those treatments. I've been to the laser spine institute as well for surgery to those areas and got no results. Guess I'll see how this scs device works.

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Hello, everyone--we know this is an older post, but we'd like to share some new content SpineUniverse recently launched specifically about spinal cord stimulation. This article is a great place to start as you explore this treatment: ( Spinal Cord Stimulation for Chronic Pain: What You Need to Know ).

We hope this information helps clarify spinal cord stimulation. If you decide to pursue this treatment, we hope it helps you find relief!

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