Spinal Cord Stimulation
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Notes on Spinal Cord Stimulation
steve45447 tammy1123
Posted
steve45447
Posted
Hello Marie, Wendy
I guess I am butting into the conversation myself but feel the need to throw in my two cents worth. Concerning the doctors as experts and us as laymen is really not so accurate. We all know we are suffering and why and where and the Doctors try to figure it out, at least the good ones but they have no personal experience with all our individual problems. I have been working on my problem for five years and while it is complexI have seen at least 30 doctors and most don't want or have any idea how to fix you. Most will cover for post OPP problems done by other doctors, check out John Hopkins report on this. We have got to try to understand and help ourselves and in the process find one of those doctors that are going to try and help us know matter what.
cynthia70714 steve45447
Posted
Steve45447,
I agree each person is a different case, we all go through pain, what we do on here is vent complain and tell each other's stories and maybe understand we will or can get a little info from one another, I personally had my stimulator Nevro stimulator put in revised and taken out on Dec 8th had it in for a little over 2 years I thought my world would was going to change for the better but in my case it got it worse, not that my Dr is getting greedy by not taking certain insurance companies I am losing him after 10+ years I got to know all the people in the office, and I feel so disappointed knowing I have to find a new dr and start all over I've had so many different procedures steroid injection and you name it in the past 20 years as I got hurt at 25 I feel like I did 20 years ago and now to lose my dr, it's a shame that drs see money signs instead of helping us who hurt, he was going to do a MRI and get going on that to see if I need another fusion and now I'll have to wait probably a good 3-4 years for them to do anything again.
Thanks for listening and hope you have a pain free day
Cynthia
steve45447 cynthia70714
Posted
In my case I am done with surgeries they have hurt as much as they helped. My Stimulator does help but there is no way to get off the Neuronton and Zanaflex. Use pain creams in place of pain pills. Got off of them 4 months ago and still dealing with withdrawal symptoms. Saw six doctors for help, they were all useless. Should have checked into a clinic as everyone is different but dealing with those symptoms is its own form of hell on top of all the other problems.
Anyway, I sincerely hope you find a good new doctor and you do not have any setbacks.
marie04822 steve45447
Posted
I attempted to find the report from John Hopkins that you referred & couldn't find it. Would you mind sending me the www. location of it? I definitely feel the more informed we become we can understand what the Doctors are telling us. I do feel a lot of them speak a different language. I, too, have gone thru 5 years of pain by I am hopeful the Stimulator will "stimulate" What else but hope do we all have? Short of looking up a Medicine Man we have to stick with the current medical professionals. Good luck to you all. Marie
cynthia70714 steve45447
Posted
Steve
Yes I am hoping to find a good dr the whole starting over is going to be a mess, plus I have been on methadone for 20 years and oxycontin zanaflex valium frova for migraines and dicoflenac for arthritis it's amazing cause if I don't find a dr I'm scr ewed the Dr I'm seeing before I leave is going to help me out with meds for a few months until I can find a new dr. I hope I don't have to go through withdrawals and he said he'll give me a way to come off the meds the right way so I don't have a stroke it's unbelievable, how your insurance can let these drs do this because of what insurance we have, I'm so sickened by that alone
Cynthia
Emis_Moderator marie04822
Posted
If you want to exchange links that may not get posted you can use the Private Message service to pass them on.
https://patient.uservoice.com/knowledgebase/articles/398331-private-messages
Regards,
Alan
marie04822 steve45447
Posted
steve45447 marie04822
Posted
marie04822 steve45447
Posted
jarhead63 tammy1123
Posted
I just found out yesterday that my pain mgmt dr will be using a St Jude SCS on me and I'm going to have a one on one with him this Monday and ask him a few questions and wondering if y'all have some I might ask.......I know I want to ask why he's using St Jude over Boston Scientific ; what kind of relief (percent wise) is he expecting, how long is the trial with this one, what are the odds it will help both the back and neuropathy/nerve damage in my feet, and should I get this or should I maybe get the Dorsal Root Ganglian Stimulator.......
What you guys and gals think and any other questions ???
cynthia70714 jarhead63
Posted
Jarhead,
I was gonna get the St Jude's cause the Nevro wasn't working but with the pain level I had he thought that would be better with my kind of pain, but before taking out the Nevro we talked and my systoms sounded more to do with sciatica or pinch nerve than anything, but do ask alot of questions I was talking to the rep from St Jude's and he said to bad that I was leaving my Drs office cause after he did CT scans and found out I would of been a good candidate for the St Jude's one it sounds like my systoms fit with St Jude's, now I got to find new dr get MRI with contrast I just have a feeling that I'm gonna have to have a few more levels done and if the pain is still there m the new dr wants to try the St Jude's stimulator I might give it one more go at it, I just want to relief some pain and get some of my life back that I lost over 20 years now, I know you can't get back the time but hoping for some relief from all this pain, ask questions like charging battery life how long does it take to charge and what percentage of relief will it give you.
Take care and best of luck and keep us updated on that unit.
Cynthia (Cindy)
PS happy holidays
jarhead63 cynthia70714
Posted
Praise God and thank u Cynthia.....My Dr stated that he truly believes the St Jude ((with new "burst" technology)) will help tonz with my lower back pain (even though coming from like L2 and L3 area ) AND very probably my neuropathy pain in the feet and that wud be ssssssssoooooooooooooooooooo awesome considering they've been hurting since boot camp in 1983 ........ And he said if it doesn't do all he believes it will I could always try the Ganglian Dorsal (??) stimulator, except that it will only help with the feet and not the back.........But he said that he really likes the St Jude SCS and feels their reps stay in touch with their patients much better than Boston Scientific and I will definitely need that......So we're hoping and praying and I'm praying for all of us/y'all to find relief without pills and such....Something like the SCS WILL help and between that, chiropractic help,acupuncture, we ARE gonna win !!!!! Scrwe pain !
ddv01 tammy1123
Posted
Hi Everyone-I feel like I have many kindred spirits on this thread. I have had my neck fused from C3 to C7 (2 surgeries), I have had laminectomies, discectomies, fusions from L4 to L5 and L5 to S1 (4 surgeries), all of which have left me with severe burning, tingling, stabbing, shooting pain in both legs, both feet, my left foot is numb and I cannot move my toes, pain continues in my lower back, neck, shoulders, arms, hands, fingers. I cannot sit, stand or walk for good amounts of time and am on enough meds to knock out an elephant and still no relief. I have had the St. Jude and Medtronics neurostimulator testings, both of which did not help and last November 2016 I had a pain pump implanted and ended up back in the hospital with cellulitis, sepsis aureus, pulmonary edema and congestive heart failure. I was very blessed to have made it through all of this and then the pain pump had to be removed in December 2016. My wound would not heal and I had to have a neurosurgeon take the pump out and plastic surgeon to remove the necrotic tissue that developed from the original surgery. It took me a very long time to recuperate and I spent most of 2016 in the hospital. My Pain Management Dr. suggested a new neurostimulator made by Nevro-he said it worked very differently from previous neurostim stims in that it did not present with any type of tingling (parenthesia) that the other stims did. I had the test for this recently and finally found some relief from the burning and tingling that has plagued me since 2011, every moment of every day. To me, this was miraculous! It did not help too much with lower back pain and the severe cramping I developed in my left leg and thigh, but I was happy with the reduction of pain I did have. After the Nevro testing I was told by my PM that to insert this system permanently they would have to insert a paddle with electrodes in my thoracic space, which would also require laminectomies, and then an additional incision to place the device in my upper buttock. It would obviously entail a hospital stay and at this point, I don't know what to do. After so many surgeries and hospital stays I'm not sure I want to go through another invasive procedure again. The funny thing is that since the testing electrode was removed from my back, my level of burning and tingling in my feet and legs is not gone but has subsided a bit. Anyway, I hope this is helpful to someone out there who is facing these issues. My thoughts are that I have to try everything and anything that could help me with these severe pain issues that I live with every day. I always say that except for my November 2016 pain pump debacle, I am blessed that my issues are not life-threatening, only life-altering. I wish you all better health and to not give up-something just has to help us.
jenny65761 tammy1123
Posted
Hey - I spotted that this discussion came up if you search for Nevro patient blogs. I spent quite a while hunting out blogs from people who had a Nevro fitted for real unbiased info but struggled so I started my own. Here is my one month update which I hope I’m ok to share:
https://bionicjenuk.wordpress.com/2018/08/12/month-1-complete[/b]/