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Your Experience/Thoughts on Spinal Cord Stimulator
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nowthis posted:
I'm going to see my PM Dr. next month and we are going to talk about options for my Low Back & Leg pain. Bulging Discs L4/L5 L5/S1.

I have been having these problems since i was 14/15, am now 25.

Im on Oxycodone 15mg 4/day and MS Contin 30mg 2/day. Been on pain medications since i was 18. Although they do help, i am wanting to try something else that can POSSIBLY provide more pain relief on top of my medication.

I have tried Physical Therapy, Facet Joint Injections(never again), Epidural's(which do help my leg pain), Chiropractic Care, Disc Decompresson Therapy(did help my leg pain), i think thats it.

Anyway, wanted to know if anyone had any good or bad experiences with the SCS, or possibly surgery includng Discectomy, Spinal Fusion, Laminotomy, Laminectomy............

Thanks for Everyones Help!

Johnathan
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Out2kat replied to An_223480's response:
You should LOVE your permanent St Judes Permanant (see my other posts & attempt to post an MRI slide )- one of my POSTS ACCIDENTLY came up under YOUR NAME - but I signed it at the BOTTOM with my E-mail address : kovacsmar@aol.com Subject SCS or Back Pain - Web MD

NOW it took 2-3 weeks for the HEALING of the permanent BUT DO NOT GET DISCOURAGED ........ it takes some time and maybe an adjustment but I LOVE the relief and St Judes could not have been nicer and worked well with my AWESOME Dr.
GOOD LUCK !!! Marilyn
 
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levinescott replied to An_223479's response:
just a little suggestion contact the rep from the stimulator they can readjust the settings to make it smoother less vibrating
I have to have mine adjusted every couple of months due to the amount of scar tissue I have
Good Luck
 
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Kavyo responded:
Johnathan,
I have had three micro-diskectomy surgeries and a spinal fusion all on level L4-5. I had the St. Jude central stimulation unit implanted in August, 2006 to deal with foot and leg pain. It has been a great help. Although I am still on pain medication and MMJ the stimulator helps a lot, it reduces the amount of pain medications needed. It causes a "buzzing" feeling in your lower extremities, which is not too bad once you get used to it. You would have to fight me pretty hard to remove it. The most important thing is to have a good surgeon whom you trust, and to be extremely careful after the micro-diskectomy surgery to be sure you do not re-rupture the disk, as it is weakened by the surgery, trust me I know.
 
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daisydo63 responded:
I just got my temp. trial Tuesday. TODAY, NO PAIN, Slept through the night for the 1st time in 26 months. My back is sore from the procedure but my Spinal pain, lower back COMPLETE Lumbar region and si1, NO PAIN !!!!
Mine is through St. Jude Medical. I am secheduled for the permanent one in a couple of weeks !!!
L. Wade
GA
 
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daisydo63 replied to ctbeth's response:
I TOTALLY agree!!!!! I told them today, they can't have the temp back until I get the permanent !!! LOL.
 
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daisydo63 replied to ctbeth's response:
Mine is St. Judes also.
 
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Jayg53 responded:
Hi Johnathan,

I've had bulging discs/degenerative disc disease, sciatica for about 25 years now. Several caudle injections, epidurals, SI joint injections (3rd and last one caused a cortizone flare for about 3 months -felt like my testicles were being crushed for that time). Tried a SCS for a week 2 years ago which was ineffective for me. What was supposed to be about a 5-10 min procedure turned out to be about an hour long. The surgeon said he had done several thousand of these but had never seen a spinal chord like mine, he said it had an extra sheath around it that he couldn't easily fit the wires in. In hind sight it was kind funny cuz he kept poking me in the spinal chord which caused various parts of my body to jerk around and he kept telling me not to move and I kept telling him I couldn't control it and he kept saying he knows but don't do it cuz he is messing with my spinal cord. My primary doc (who focuses on chronic pain) went to a pain symposium and the results at that point were that SCS is only effective in about 10% of the cases. So far the best results by far for me was going thru a 3 week intensive "Structured Pain Clinic". I was introduced to yoga, tai chi, pilates, diet, sleep, effectiveness of endorphins and how the body and mind works with pain, how the various types of meds work. The regular practice of yoga, tai chi and pilates has become a part of my daily life and at times I am pain free. I had another injury about 3 1/2 years ago where I tore the labrum in my hip very badly and I had to be fairly sedentary for over a year which caused all the back and leg pain to flare up. Now I'm slowly getting back into my regular maintenance routine. It is very hard to get moving when one is exhausted from pain and lack of sleep and the depression that usually follows but that is the best thing to do. Get the body as fit as possible and you can deal with the pain much better and your quality of life will be much improved.
 
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CAHayden responded:
I am sorry you have had such trouble at your age. I tried everything without help. I agree I would NEVER do facet injections again. I had a stimulator implanted 8yrs ago. I can't say it is a cure all becuase it isn't but it did help. What helped was that I was able to decrease the amount of medication I took daily I did not go back to PT but started walking daily regardless of weather or anything else. At first it was 2 blocks then 3 till I was able to go shopping at the Mall and not want to shoot myself, LOL. I used the SCS for 3 yrs then I just could not stand the sensation anymore. I was walking 2 miles a day and able to volunteer 3 days a week in a elementary classroom. With your history this is my advise and it is just my opinion. Go see a new pain mgmt specialist, interview as many surgeons as you can and look at a more aggressive tx plans, yes surgery. You are taking a pretty good dose of narcotics daily and that only causes more problems the older you get. Surgery is scary but it may be that with least invasive surgery you can get off the drugs and have a better life. Wishing you the best!
 
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CAHayden replied to Jayg53's response:
I agree I have had chronic pain since 1991 and tried everything. The stronger you are the less you hurt. I only need a day of depression to remind me why I must move wether I want to or not. Good luck.
 
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pamspigs4 responded:
I have it. it works great for me. rechargable battery is terrible. i have a new battery put in once a year. that's the only draw back. go for it. i have told others to do and they are glad they did it.
 
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jemmbee responded:
I too wanted to try the SCS but it didn't work for me. My doctor inserted the temporary (trial) version made by St. Judes. It was removed 2 days early because, even after 2 tried at reprogramming, I had too many "positional" problems. They consisted of pretty painful jolts of power when I made the slightest changes of posture or position. My doctor has suggested that we try again in 3 months with a different brand of SCS -- the one made by Boston Scientific. Most of the replies refer to units by St. Judes - has anyone any experience with Boston Scientific? (My pain is in lower back & left leg & foot). Thanks.
 
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Willowgirl53 responded:
Johnathan,
I had a fusion at L5-S1 in August 2007 due to arthritis. Unfortunately I still have a tremendous amount of back pain. I am also on lots of pain meds.
I had the injections as you did and to no avail they did not work. I also have been to PT numerous times. When I had the trial for the stimulator I thought my prayers were answered. As they were testing the area where the electrode was placed I said "Sign me up for the real thing, no pain!" It was difficult to tell during the 5-7 day trial to tell if it was really helping. Although I did have such hope that it would because of when they were doing the procedure and the stimulation started and the pain was gone.
After the trial was over I had the stimulator implanted. Again unfortunately I still had pain.
The stimulator relieved my left hip pain but it just could not capture the low back pain. I waited the appropriate amount of time to go back to be reprogrammed. Still no relief. I then went every two weeks to be reprogrammed for quite some time. They could never capture the lower back. I could feel it from my toes to about mid buttocks on both sides. I also felt it in the pelvic area, abdomen, and both sides. When feeling it in the abdomen it was very uncomfortable.
I finally had it removed after ten months.
I did meet a man whose son had a stimulator for ten years and had no pain since then. I do know of a few people who have had fusions and do fine. I am one that nothing has worked so far. My pain medication takes the edge off the pain. Although I cannot work and do not lead a "normal" life.
My best wishes to you in whatever road your choose............
 
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mredn73 responded:
I had a GREAT TRIAL with my SCS system! This being said, the surgeon decided on using Boston Scientific's SCS system, there are other manufacturers, and I have had BAD LUCK with it!! The 1st one they put in would not charge and had to be replaced!! The second one covers the right side pretty well, but that surgery caused scar tissue to grow at my L5/S1 left nerve root, which increased the pain and the left lead needs to be revised!

That said, I wholly support the SCS, the trial was AWESOME! I was able to get out and do things I couldn't before because of the pain!!! Just be careful and make an informed decision about the final unit that is implanted, you'll be living with it! I plan to have mine removed and have a Medtronics brand put in it's place.
 
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imachildagain replied to Willowgirl53's response:
What an incredible difference in people's pain relief. I've had L4-S1 fusion, and C4-C6 fusion, 4 epidural injections, 6 radiofrequency (nerve cutting), years of pain doctors, P.T., exercises, ointments, neck cortisone injections. 6 months after lower back fusion, scar tissue wrapped around screws causing severe Sciatica pain, aching in buttocks, thighs, calves, 3 knee surgeries (same knee), Neuropathy feet pain, lower back pain. Had the Medtronics SCS trial and the 1st day I knew it would work. I could barely walk before, and the 2nd day I walked up a steep hill, cleaned house, etc. The permanent implant was put in about 6 months ago. Medtronics has patiently helped me target different areas and have many different settings. I did not think it would help the knee replacement, but it certainly helps, and helps Arthritic pain in my other knee, takes care of the sharp Neuropathy pain in my toes. The lower back seems the most elusive, but I do have one side that works perfectly and a new setting is working across the area. I use at night also as without it I only sleep 2 hours and wake in pain. So I turn it way down and sleep normally now and am building up my energy and exercise. I chose the rechargeable as it's supposed to last 9 years instead of 5 years. This is Medtronics brand that makes the pace makers. It is excellent, and I use it at very high levels, so usually have to recharge after 5-7 days. But if I remember while I'm watching t.v. at night, I just charge and try to keep it fairly full all the time.

Now for the upper back, had C4-C6 fused, now problems with C3-C4, and C6-C7. But tests are showing it's all 4 discs causing more nerve pain. The Neurosurgeon and I both feel more fusion is not needed, but the last medial branch block worked great, zero pain in mid-back and neck, no headaches, no arm pain or nerve pain. Then did the radiofrequency for those areas that didn't work at all. I'm wanting to see about a cervical SCS as the lower one was so great. My pain level in upper back, headaches, etc. is at a minimum of 8 every day.

The tingling pain from the SCS is weird at first, but I've adjusted, and has decreased a lot until there is a change of position, but no sharp jolts. If I have more extreme pain for a while, I gladly take sharper tingling for a while to get rid of the pain and then turn down.

It has saved my life as such, I can sit at the desk, do house work, play with the grandkids, actually go shopping, and just enjoy life and work.

For those that it doesn't work, don't quit trying. I couldn't take any more nerve cuttings, hard drugs, surgeries (33 in total), and this has worked beautifully. Medtronics told me that after about 6 months most of the tingling does go away and I can easily drive now without the worry about a jolt.
 
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nowthis replied to An_223479's response:
Wow, i really hate to hear that your not using it already! Did the trial not work? I hope you will take CTBeth's advice and talk to your MD to see if the can change your settings.

Good luck & thanks for responding to my post!

Johnathan


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