Spinal Cord Stimulator
Posted , 146 users are following.
Has anyone had a spinal cord stimulator,it has been one suggestion for my husband who is still suffering after 4 years after his first surgery, he has had a further op two years ago and is still suffering immense pain, has weakness in his leg and finds walking difficult and now needs a stick to walk with. I am hoping someone has had a spinal cord stimulator that has had similar condition as my husband because as I understand it it is only a minor op to implant. I think the other option is fusion which I have heard horror stories about, especially as he doesn't seem to have success with major ops. Thanks
19 likes, 888 replies
robert26463 khi
Posted
I see my back doctor tomorrow. I turned off my SCS last night to see how my Trazodone and Lyrica worked without it. After about 3 hours I turned the SCS on again. I can say that it did give some relief, but not nearly like the advertisement book that came with my SCS suggested. My pain is somewhat controlled between the SCS and my medication, but I am nowhere near what I expected to be. I hate that I don't have a Nevro rep available locally. If I want a reprogramming I have to wait until my doctor is implanting another Nevro SCS to get squeezed in to see a Nevro rep. That is just plain wrong. Had I known this before I had the implant, I would have chosen a different route. Their is a pain control clinic in Montgomery that uses the Boston Scientific SCS. If you need help, you can just drive up there and see them. I had an unsuccessful trial with them, but I would be willing to give them a second chance. They were pleasant and available. I'll update my posts after my doctor visit tomorrow. About all I can say is the SCS didn't eliminate my need for pain medication. And that is what I thought this was supposed to be about.
ken23428 robert26463
Posted
Robert,
Montgomery? What state?
I'm a Crimson Tide fanatic, born in Mobile. That would be crazy if you are a "bama" resident.
In a previous post I stated what the spinal clinic nurse told me. " The patients get the SCS implants, but they still want their meds".
As I said before, either you have a drug addict or the SCS implants don't work.
I feel bad for your situation. I live in San Antonio, and there is always medical practices around. I guess it's the military bringing us around from all over the country. Its not bad if you enjoy the 364 days of summer here. I don't remember Mobile being this bad. At least there isn't a bullseye painted over this city for hurricanes. I went through too many in Mobile.
I would call Nevro in California. Make the Nevro rep come to you.
I just dont want to make headlines for an ex P.D. getting a dui. Ive fallen asleep at a red light before. That changed my mode of transportation quick. Also, no meds if I drive.
They should accommodate for some of the distance at the least.
I inderstand what your going through, just hope they dont cut your meds. I could do without the SCS . The meds and a heating pad are what helps. Prescription strength lidocaine works as well as anything too!
Blessings,
Ken2438
debby88905 robert26463
Posted
debby88905
Posted
SORRY!! That was entered well before I was finished!! Anyway, the SCS I've had implanted since 24 May '17 is an utter failure. This discourages me at the very least! My trial went so well, and I think I've said it here already, the permanent is, has to be, a different one, period. The trial had a three year battery life, I was told there was one with approximately ten year battery life so it made sense from a logical standpoint...just very different results. Programmed & re~programmed, at least twelve times and no change. It's more than a fair shot in my opinion. I learned to turn it off when I went to bed as this is the only position I get relief. I take Trazadone as well, but now smaller dosages. I'm "fortunate" that I am able to rest with mostly little discomfort, though in recent weeks I've noticed that changing a fair amount. I'm going back to see my Neurosurgeon in a few weeks, the pain mgmt. dr. has little to no time to spend with me. I wanted to mention my SCS is Abbott formerly St. Jude. Programmers are easily seen, but I just don't think it's the way to go for me as far as getting relief to any degree. Hope all goes well for you, and everyone else here. Take care.
robert26463 khi
Posted
Sorry--I should have said Montgomery, Alabama. I was stationed at Fort Rucker, Alabama, from 1978 until 1980 as a writer for the Army Flier newspaper. That was my first assignment after completing my training at the Defense Information School.. I was born in California and I was afraid Alabamans would be a bunch of Klansmen and rednecks. When I got here I found the people to be the friendliest I had ever encountered. Twenty-five years later I was offered the managing editor position for an Army magazine called "Countermeasure." I was glad to accept the position and I spent the final 10 years of my DoD civil service at the Army Safety Center. I retired in January 2013 in good health. I had to wait for retirement to do stupid stuff that has brought chronic pain into my life. I desperately want to minimize my pain and the affect it has on my life's current goals. The Nevro SCS was presented to me as a way to reduce my pain significantly. It has helped some, but not nearly as much as I would like. Now here is the funny thing about my job at the Army Safety Center. My desk was positioned between two women who worked as editors. Paula was a graduate of the University of Alabama. Julie graduated from Auburn. When football season started I had to duck to dodge the "bullets" between the two. I was "asked" to pick a side, but I told them I was a fan of my school--Central Missouri State University. So I effectively dodged that one.
ken23428 robert26463
Posted
Sorry to say that although Alabama is number 1, Julie has bragging rights.
Im' still in mourning about that one.
I'm a Dallas Cowboy fan(atic) too.
My son is twenty three, and has yet seen the Cowboys of old, the "triplets".
I'm doomed for The NFL season.
I would demand the SCS be removed, at least for a better brand. It only cost tri-care about 90k. Whats a few more dollars?
Blessings and good luck with the Army career. My Dad and Mom did very well in " the day". Although nothing could make me live through deployment in South Korea again.
I had the feeling the government was slightly corrupt. No proof, just a feeling.
Blessings again,
Ken
robert26463 khi
Posted
I forgot to mention that I did call Nevro in California after the rep who was supposed to help me quit after 6 weeks. Whew--did that ever create conflict between me and Nevro. My doctor's staff treated me like I had leprosy. All it did was get me a "squeeze in" meeting with a Nevro rep when my doctor implanted another Nevro into a patient. The crazy thing was the rep did the reprogramming on her laptop in maybe two minutes. The problem is the reps are traveling all over the country so for me to get an appointment with a rep is a rare thing. It is like buying a fancy, expensive car that requires special maintenance but the mechanics are always on the road en-route to the next customer. Kind of sounds like they are more interested in selling than maintaining.
ken23428 robert26463
Posted
Good choice. My wife is an Air Force brat from Springfield. But she is half German. Missouri was just a pit stop to have a kid.
Sorry, but I have not heard of a University in Alabama by the name of Auburn. As far as I know the only in Alabama is the Crimson Tide.
My Dad was a retired Full Bird Col. in the Army (RIP). A very smart man.
I guess you can add another 18 years to my service record.
I was an MP in the Air Force and that led to my led to my Career in L.E. Thats was before you could transition to a civil service position without much trouble. Not me! Same with my Mom. A Captain in a typing pool (wow, that dates me) straight to Civil Service.
As for the reprogramming, I havent had any serious trouble getting a Nevro rep. Its a new one every time, so its like starting over. I have a deadline, so Im not dealing with this POS much longer. I feel as if I have aged twenty years in the past two. My pain has intensified after this implant, so it is truely a POS.
The Nevro rep still is pulling my chain. She stated the Nevro implant has completly turned lives around once the correct program is found. Im skeptical to say the least. Success is about a 50% reduction in pain, not a 20% increase.
Its not the last thing I'll try. The pain pump has a few good reviews. Just minor side effects, like possible paralysis. And...Germany has great reviews on disc replacents instead of fusion. That would give the wife a good vacation. All my bills are paid, and the kids have graduated from Incarnet Word College, so whats 120k! College for two was cheaper and less painfull.than my spine. The focus now is my health. I have plans of cruising the world and going to Vegas and New York, they are on indefinite hold currently. We went on vacation to Vegas in Janurary. I was in so much pain I was in bed by 9pm. The first time we both passed out on the plane trip home! Chronic pain changes a person so mùch. I used to look like
Arnold's ( The Governator) training partner. Now I dont look in the mirrors, its too painful. To painful to work out also.
Too return to the topic, I also have the very same feeling about my pain clinic. Everyone's an addict. The Nevro reps look terrified, as if I was going to serve them with a lawsuit. I may just do that if if all programs are tried.
Now that the DEA is involved with our meds, its going to get tough, so nows the time to get the Nevro out or reprogramed. Soon we will be given aspiren for hospice care.
Im about to wake the spouse for work, cause Im medically retired
I know this is early, but my back keeps me awake most nights.
Blessings for you. I pray you will find something that helps besides the meds.
Ken
Jenjo683 ken23428
Posted
NEVRO, could never find the right program for me I was in the same boat as you. My leads migrated north on me twice causing an extra surgery the first time. The second time, I said nope, take the POS out of me. Its causing me more pain than helping me. Man was I ever right! I had it taken out 6 days ago and i feel like a different person. The dr that put in it, actually spliced my wires together. I'm looking into this to see if its common practice. I've also looked into Dr. Ritter Lang in Germany. The M6 is the newest disc replacement and i believe it starts at $32k for the first level, and its an additional $4k per level. I hope this information is helpful.
michelle21711 Jenjo683
Posted
Hi Jenjo, its michelle getting back, second day with me for the trial,using burst its called,I,am in so much pain,where they opened me up and the legs are burning so bad it makes me sick,through up sick,but this is really my last resort,the doctor i had fussed the L4 and L5 and what did,i thought was great cause I was out of back pain I thought,that was only the begging the nerve damage, started and i was screwed,so i go back to that doctor and he did another mri, and said oh no now we have to fuse the L3 into L4 and into the L5 and that second surgery destroed my back,i got every shot they have no relieve ,i have so much metal in my back,went to another doctor and he said he wanted to take the medal out,I dont believe him, to do that much more damage i could never recover,so that brings me to you with your screw up,think about BURST,Its on the outside for a week hitting back,hips legs,and in a week if i get that 50% relieve i will go for the surgery to put it on the inside,Please dont stop looking cause the pain we take over your life,remember its called BURST,got bless and keep me updated.
debby88905 michelle21711
Posted
To michelle21711 Oh man do I ever understand the surgeries, the SCS, and my nerve damage is what I'm left with in left leg. I'm fairly certain the one you're talking about is Boston Scientific Spinal Cord Stimulator. Not the kind I had, mine was Abbott formerly St. Jude. My trial was like Heaven! The permanent was a different unit with a battery with about 10 years life. It NEVER ever helped. & I drove to Denver (about 120 miles one way) at least a dozen times to re~program which never helped me. I REALLY hope yours will give you long~lasting relief. I've only read the one post by you so not real familiar with your situation. I just had to say something after reading this one you wrote! So so familiar. I've had L1 through S1 surgeries down to 9 screws, a rod, spacers. Used to have cages several rods & more screws than I could tell you! I had my SCS removed during my last surgery Aug. 24th 2018. Being in so much pain caused me to become desperate! So I trusted, hoped, prayed even that SCS would help... 😦 Picture a sad face here! I wish you well, I personally have NO faith in this thing & have read very few positive comments. I've come to believe these docs have stock in some of the different brands of these SCS's. . Been a while since I was here until I saw you'd made a comment. Best to all here....
robert26463 khi
Posted
I saw my pain doctor on Wednesday. He implanted the Nevro SCS back in January. We had a frank conversation about the Nevro SCS and its relatively limited pain relief--certainly far less than promoted by the advertising. He told me about 10 percent of his SCS-implant patients get no benefit while the amount of help the other 90 percent can vary significantly. I wish we had had this conversation before the implant. My expectations turned out to be way too high.
To say I am disappointed would be an understatement. However, my disappointment is not with my doctor. I believe he believed this could really help me. My disappointment--dare I say disdain--is with Nevro. NEVER go Nevro! You will be left hanging on the end of a limb. In my case Nevro's reps weren't available when I needed help. My rep wouldn't answer my texts or respond to my calls after 6 weeks. Unfortunately for me, the SCS wasn't working and my family doctor cut down my pain meds so I could feel the "benefit" of my SCS. A real double whammy! I can't find words to say how I feel about all this. all I can do is reiterate--NEVER Nevro! Never Nevro! Never Nevro! Never Nevro! And if I didn't mention it before, Never Nevro! I can't say for sure about the Boston Scientific SCS. What I can say is I received much more information about the Boston Scientific SCS before I had my trial. Also, I always had help within a reasonable driving distance. Those two things were very valuable and, I think, essential to responsible, proper patient care.
.
debby88905 robert26463
Posted
don'tI agree with you 110%! I had an Abbott formerly St. Jude. I do hold the "dr" accountable in a big way. Earlier post to michelle I said I believe a lot of these docs have invested in these companies, Boston Scientific, Abbott, or any of them. Yes i may sound paranoid, but I don't doubt it at all!! My trial was Heavenly!! but the permanent was a totally different unit. After about 14 months I had it removed during my last back surgery. I turned my SCS off the last 6 months or so that it was implanted. useless anyway. Best to you.
michelle21711 khi
Posted
Hello, my name is michelle,im starting my trial back stimulater ,as of today, after two back surgery and its very scary,but this is the only place i have left to go,i pray this works,after the two surgical back operations i had so much nerve damage in hips,legs,buttocks cream, or nothing works, i really got depressed ,so like i said when you are in this much pain,you cant see the other side i were this for a week,and the doctor wants at lease 50% or better pain reduction im beyond that praying,and giving it my all,and in one week the trial comes out and the forever one goes in,like i said there is no life while you are in that much pain,wish me luck and please pray that this is just a little note,too you and your husband,that there is help,my trial stimulater is my last resort living pain free, and i will take that 50% please let me know how you both are doing, and if i can help.
curtis7677 michelle21711
Posted
Hi Michelle; Curtis here. I have had great success from the trial stimulator. It was installed in November 2016. I had probably 80% pain reduction with a reduction in my pain meds; Opana (40MG X 2) per day and Oxycodone (10 MG/325 X4) per day. I was able to reduce the Oxycodone down to 2 tablets a day. I tried the Nevro stimulator after a double fusion (L4/L5 & L5/S1). I was experiencing a lot of break through pain even with all these meds without the stimulator.
I had great results during the week the trial SCS was installed. I had the permanent Nevro SCS installed on December 7, 2016. It took about a week to get the Nevro SCS dialed in. I experienced 75% - 80% pain relief from December 14, 2016 until April 17, 2017. I began to have a lot of break through pain again and the SCS had stopped working. Come to find out my leads had dropped a 1/4 cm and was not aligned with the area. It was not until September 2017 that the Nevero Rep and my Pain Mgt doctor said "hey lets get an MRI and check the leads. So during this this 5 months I went up to 15 MG Oxycodone 5 times per day and since Opana was taken off the market was on 40MG Oxycotin twice a day. (FDA took Opana off the market in July 2017. So the doctor thought the change to Oxycotin contributed to my break through Pain.
It took several months to get dialed in again but working with the Nevro Rep for my Pain Management doctor we got it figured out. Since that time I now experience 3 weeks of 80% - 90% pain relief and I am backing off the meds. the fourth week of every month I have to lower the level on my SCS two levels from where I receive the most pain relief. They have not figured out why I am getting too much stimulation after 3 weeks and have to go the 4th week with reduced stimulation.
All that said I realize I am in the minority of those Nevro patients that have had some success with the Nevro SCS. I have found that less stimulation is actually better than more. Its not perfect but it helps a lot. Good luck with your procedure. Give it time, it may work for you. Remember sometimes the less stimulation is better.
michelle21711 curtis7677
Posted
hello,curtis, 7677 thank you for all your info, I have a doctor that said ,well if this dont work for you,there nothing we can do.I went to my sergent and he was going to take all the medal out I would not do that because on mri the medal looked great,the nurve damage in my legs,hips,back.and my legs are so filled with water,but the meds he has me on is hydro every 4 hours,i would love to come down on meds but cant,i have a doctor that thinks well if this dont work,there is nothing we can do,Im on 2 and half days on trial,still have so much pain i just shiver its so bad,if i had a good pain managent doctor,I think we could work this out,I dont know who your doctor is but i wish i did
knew,Im just a number here,I have tried everything I also had L4 L5 and it stared with that,he went back in and fused the L3 S1 so after the 2 back surgery ,the nerves became so intense i would just lay there and cry,i cant go any where im in so much pain, and his girl at office tells me this is a very easy trial,so we all no she dont no what she is talking about,i was at my last hope here,please curtis help me find the the right place ,and what do i do now,i also took somthing for my shanking with pain and he made me get off them,he said they dont mix, im so scared that if this dont work he will send me away,after spinal tap nurve test,im feel like im alone and have no life in me to get the help i need,i want to thank you for all your infro ,its nice to get someone to talk to, thank you so much,I will pray for you,again thankyou.