I've had my burst stimulator since Feb, 2017. To the point, I can't get the doc or a rep to give a good answer on how high to set the amplitude. I can find no literature. To me it makes sense, the higher the better and I have seen some reviews that state the same, but I don't want to over stimulate either. Just curious what number do you keep yours set on? I'm at 38, but feel I need to go up.
I had my neurostimulator implanted almost a month ago.
I am still having the same pain as before! I turned the unit up and it helped a little but I was light headed and sick to my stomach.
The rep called and wanted it put back at the setting he set.
I am so frustrated.
Have others had this happen?
Mine is 8! 20 was too much for me! Ugh
I know the info seems scarce. I have a caring rep thankfully. Ask for a different rep.
Hi
I had my implant about 6 months ago, didn't work while the trail did
I was reading this site and joined it because I am considering doing the Burst. But I do have auto immune disorders and so far the artificial knee and the screws and bolts and my back are causing much of an inflammatory condition. The more I read this on this site the more I think this battery could cause an even more inflammatory condition . Knee replacement and revision did not work much swelling and heat and pain . Fusions in my back feel hot also and still have all the sciatica pain. I also hav The PM doc told me this would take all that pain away. But now I don't know I have had so many things done and they haven't worked and I'm really afraid of this . My rheumatologist wants me to do Humira again was on it two months and got sick. But I've already had cancer so that is very dangerous. But I really don't want to cause myself anymore pain I would love any insight anyone has on this. I take approximately 30 to 40 mg of oxycodone a day and they act like this is so bad for you it doesn't take away all the pain but it makes it where I can function most days. I think it might be better than this and possibly cancer? But as someone has already said on this site they just keep on about opioids and frankly in my experience over 20 years of remedies they are the only thing that is helped noticeably . And less dangerous I think but they're not much of a money maker anymore.
I agree re the rep. He was great prior to and right after the implant. I called him about a month later to say I was getting shocks from the battery. He said if it’s not to bothersome, don’t worry about it. I must say the St. Jude’s Burst did take care of my lower back pain.
Have you ever had an issue with overheating where the battery pack is implanted? Also I just had a kidney stone which I have never had before, I wonder if this device can cause kidney stones.
Hi all. I just joined the site and I read through all the posts. Oh my how interesting; I wish I would have found this site sooner! I had the Nevro device implanted 1 1/2 years ago. The trial worked great; I had about 60% pain reduction! Unfortunately the permanent placement has not worked; I even turned the device off for four months and kept a detailed daily diary for 8 months in total. My Nevro rep said have been hot and cold. When I told m6 PM that Zite was not happy with support he called them and obviously made it clear he would not tolerate poor support for his patients. They then had the tech come meet me at my doctor’s office and reprogram the device again. I have been through most of the new settings and it is still not helping. I think the trial works better because you do not have a big batttery in you pressing on nerves. I too would have nausea and shock-like pain and with the help of my rep we figured out it was related to over stimulation (the power level being too high). I have found that no matter what programming they do (setting up which electrodes will send stimulation) if the power level is above 3 lights I have bad effect s of over stimulation. The power level tolerance will differ by person; I am small/thin so for me it is lower. I was seriously pursuing having it removed but I do believe that there are still times when I might get a 10% pain reduction and 10% is better than nothing! I am on 37.5 Fentanyl Patch and now down from 80mg of Oxy to 40-50 mg of Oxy daily (on top of the Fentanyl). Are any of you able to work? My life is drastically changed; I have lost about 98-99% of what I used to be able to do. Can anyone share how you recovered even part of your life while dealing with the constant, excruciating pain?
wow- I have no idea of why some of my words changed in my text above! I am sorry some of it is hard to decipher.
Kay
i am so sorry you suffer. All of us here suffer. People cannot know what it is like to wake up to pain. Days pass then weeks months and years with only memory of what life used to be. I too just found this site and wonder now if these stimulators are just snake oil.
i have a Boston Scientific implanted June 2014. It was a help until about
six months ago. The battery is sitting on the left side of my spine now (I too am thin) and the stimulator causes more pain when I turn it on. Or is it just my back deterioration is just happening faster.
looking back I wonder if it was a placebo and all along my back continued
to deteriorate until the idea of the device helping no longer works. I would have mine removed but cannot deal with a surgery. I cannot find a person saying a revision surgery really helps. Some have the device removed then regret it. What do we do Kay?
Be careful about sharing the meds you take. Best just to say opioids.
My back is now in a lateral shift, self diagnosed. When I told the PM doctor about one shoulder being higher than the other he said "our bodies just change when we get older". He never looked at me. I wonder if the shift was caused by the battery.
As far as living with this pain, I keep a journal. Every now an then I hav a good day so on the worst days I look back. Is three or four days a year enough? I don't know.
i have a DDS Double back brace which helps. Look into it. My insurance paid the most of mine.
also, there are studies showing virtual reality games work as well as opioids for chronic pain. I am looking into that.
Keep hoping for a resolution.
sending you gentle hugs.
You say the trial worked but not the permanent implant...was it because the implant was not the same as the trial. Ex. single leads trial and paddle for permancy? That was my case. I wish you luck in dealing with the pain.
The pain meds you are on would knock an elephant out. How do function ???
I just had my stim removed. Not sorry in the least. 8mos. To the day. Right now dealing with post o.p. issues. Pain from the staples. There are lot. They come out next Thurs. I have no regrets with my decision. Lousy aftercare from Abbott who bought out St. Jude. Either from their Tech in the field or from Corporate.
Now I will work closely with my new PM Dr. for other methods of control. Wishing you all the best in finding optimum pain relief with less medication.
Gentle hugs back to you PaleMoon. Thank you for your advice! Be well - sending wishes for better days.
Thank you for your post! I've had a fusion at L5-S1 and C7&c8? (not sure about neck). but still have lots of nerve pain in leg ,hip, shoulder .. Had a knee replacement and now have more pain and swelling than before the surgery ! But they tell me it's stable ? My other knee is gone and painful but it doesn't hurt as bad as the one that was replaced ,so waiting 'til Ii can't walk for that one !
I've seen a new pain management Dr. that has told me about the new Blast stimulator from St Jude (now Abbott I think). I'm kind of afraid as i don't seem to heal well.And seems I've tried everything. Many back and neck and knee injections. Didn't work.
But encouraged by your post. Because after so many surgeries and treatments sometimes we wonder if
it's just a scam.
Just to let you know your pst was helpful. If you have any other info I would appreciate It as Im still on the fence.
Thanks so much
I too believe too the press about opioids is out of control. People will abuse them no matter if they chose to. There is no money in opioids anymore as compared to other things . Procedures -lots of money. Biologics tons of money very dangerous ! I got really sick on them, I also have autoimmune problems. Think I'll stick with a few pain pills to help stay active (still pain but helps) instead of cancer or death !
Sorry someone was judging you for the pain meds you take. Pain patients judging other pain patients is incomprehensible.
we are each born with difference pain tolerance levels and suffer various levels of nerve damage. PM doctors are now relying more on genetic testing as some are born without the necessary liver enzymes to process opioids.
I am a 43 year old man with a fused hip due to Avascular necrosis which was done when I 23 years old. I walk with a severe limp because after the fusion I am shorter on one side then the other. Because of the limp and arthritis I have had an extremely painful back and am on social security disability because most days it is impossible to stand or walk. I went to a surgeon in Reno Nevada and after nerve ablations and nerve blocks he suggested a stimulator which could relive my pain by as much as 80%. This was I believe 2015 the first surgery was done by the surgeon and the St. Jude rep was there to show us how to use the device. When it was turned on I felt horrible burning and it felt like I was being shocked. I was told the leads had fallen and so I had a second surgery to replace it. The second surgery the box did not work. So again I had surgery with two incisions to remove both the box and the leads. This time they replaced it with the upgraded MRI friendly device. This device never worked correctly and soon after would not turn on at all. In the meantime my pain in my back is continuing to get worse and I feel like the device is also causing pain. I will need to have the device removed in a fourth surgery in order to get an MRI but I have put this off due to costs and needing a new surgeon because I have lost confidence in the one that performed the three failed surgeries. I have been having major depression episodes due to my worsening pain and lack of mobility. My wife decided to look into having it removed so I can have the MRI and hopefully treatment. We are hoping someone can help us with the process of a fourth surgery. So that I may be able to get some relief. The St. Jude rep was there to sell the device but after the 3rd one was installed he was replaced by a new rep who never returned my calls.
Hi, I am a nurse also and reading this is really discouraging. I was told I need a fusion, rods, screws the whole package, mid thoracic to coccyx. That is terrifying as well. This is by neurosurgeon. Also had all the pain injections possible trying to avoid surgery. The Pa called me after I left the PM office and was told I needed to go back to neurosurgeon since I have no pain relief. She approached the stimulator implant. Now, I am almost ready to say no. Don,t know what to do.....
Honestly I’m finding some people with problems with leads, battery failure and the stimulator not actually helping the pain but I have also seen more people who say it saved their lives. Which is why I had it installed 3 time maybe I have really awful luck
Ginny,
i am so sorry you hurt. The only real pain relief I get is from opioids. Pain, relief from pain should not be lumped in with the tragic misuse and deaths caused by street drugs. Taking my or your meds away will not change the drug crises.
i am 73 and have suffered with back pain for more than 50 years. By the time I got to a neurosurgeon in my 60s too much arthritis had set in for the needed surgery to be of any benefit so I got the SCS.
I spent a week in the hospital recently getting off Methadone and Oxycodone and onto Suboxone. I also started dosing with cbc oil. I can honestly say that I have very little pain now.
If I had it to do over I wouldn't do the scs implant but since I do have it I am enjoying it.