Hi Mel.
Hope your OK. Im having my SCS out on Tues coming. I need a MRI so I have to go through operation again.
I dont even know if they are replacing the stimulator as it's a bit urgent.
Really do hope you guys are ok
Ady.
Hi Ady. I had my SCS removed yesterday, well most of it anyway. I had the permanent unit installed on 17th September but almost immediately started having problems. Thought initially it was just a question of the leads having moved (confirmed by X-ray and CT). I was experiencing increasing amounts of high intensity pain in my legs and life has been fairly unbearable. So, what should have been an hours surgery yesterday to simply replace my leads, turned into a 4 and a half hours experience. Two surgeons tried repeatedly to get stimulation into my lower limbs. This time they had no luck at all and could only get stimulation into my right buttock whatever they tried. Eventually they decided to call it a day and remove the wires titally (a wierd and unpleasant sensation). I was awake throughout the whole procedure, with the exception of having the staples put in at the end when the discomfort became too much. They have left the battery in place as they feel that a very new procedure a DRG stimulation 'might' possibly work for my totally dead nerves. A DRG is a Dorsal Root Ganglion stimulation, where electrodes are attached to individual nerves. Apparently this new procedure being more targeted stands a chance of working. I remain unconvinced and sitting here tonight in pain am not sure I want anyone playing with my spine again! I hope your surgery goes well. If they are taking it all out they will do under heavy sedation and you will not feel anything. If you have it replaced, I'm afraid you have to go throught the whole 'being woken up to position it' process. Good and please let us know how you get on. Take care Graham
hi:
Tell your husband that he won't feel a thing as he will be put out. That's the best part. Yes, there is pain afterward at the placement site as there has to be a means to insert the unit. After a few days, the pain will ease up. There will be a slight soreness and over a short period of time, that will subside. My op took about 3 and a half hours as an outpatient in a hospital which of course includes prep, procedure, and recovery. As long as you have a good doctor, there should be no problems with the procedure itself. You will be briefed on how to use it and the package should also have a detailed book and a video. All are very helpful. You also have your personal consultant who will help with the programming of the unit and of course teach you how to use it. All I can say is good luck and wish you and your husband well.
Graham,
So happy to hear from you, even though it was your worse experience. I hate this thing and want it out it is doing nothing but make me worse and now I can't even stand for long without shooting pains all in my lower back and legs. I almost started to cry in the store what an embarrassment that would of been. Please keep in contact, private message me and we can exchange E-mail addresses if you like, would like and love to keep in touch with you.
Take care, heal my friend, I have been thinking of you.
Cindy xo
My husband had the Nevro Stimulator implanted 3 weeks ago and has not had any success. So far it has made the pain worse. He went to the ER 4 days post op and was told by his doctor to turn it off. The battery gets so hot under his skin that it burns. Has anyone else had this experince? This device has cost over $100,000 and is doing nothing, but making things worse.
Hi Cindy,
My husband had his simulator implanted 3 weeks ago and has not been able to turn it on due to the battery over heating. How is your husband doing?
Hi lisa77285,
I had mine put in September and when I charge it gets all hot, but my I'm worse off than before, I can't even walk for more than 5 minutes. And almost unbearable to get out of bed on days, so I can relate to what hes going through.
I hope he feels better.
Cindy
Hi Lisa. My husband is SLOWLY improving. His abdominal pain is lessening. He left the hospital with a walker and still needs it 3 1/2 weeks later. We think the leads must have slipped off to the side and touched some nerves which caused all the additional pain. Surgeon had to open up the incision and move the leads to the center. Now they are in the perfect location. His pain management wants him to heal for a full month before he actually turns on the stimulator. I still have hope that it will eventually help just feel terrible he has been through so much pain
Hi Karen. My husband is SLOWLY improving. His abdominal pain is lessening. He left the hospital with a walker and still needs it 3 1/2 weeks later. We think the leads must have slipped off to the side and touched some nerves which caused all the additional pain. Surgeon had to open up the incision and move the leads to the center. Now they are in the perfect location. His pain management wants him to heal for a full month before he actually turns on the stimulator. I still have hope that it will eventually help just feel terrible he has been through so much pain.
I'm happy your husbands leg pain is better. Hopefully the shoulder will heal. I noticed that my husband is stooped over because of the pain in his abdomen. This is causing the muscles in his shoulders and neck to hurt. Seems like it is an endless cycle
So you are happy with your SCS? My husband had trouble with the initial placement. It must have inflamed some nerves. They had to go back in and reposition the paddle leads. It's been 3 1/2 weeks and he's just beginning to feel better. Hopefully by Christmas it will be better. That would be a great gift.
Hi cynthia:
I have been following the posts on SCS and I had a stimulator trial and permanent placement. It only worked in my legs but was hoping it would work for my lower back which is the most painful. All was done as an outpatient but you are taken care of as if you were inpatient The trial was done in a surgical center and the permanent one in the hospital. Needless to say, the unit did not work as I expected it to. The unit itself looks like a pacemaker and the battery is supposed to be in the unit itself. That is what I was told. It is non-chargeable and has to be replaced every 4 to 5 years. So, no matter how I look at it, it's going to come out. The placement of the unit went well and yes, I was in a lot of pain during the first few days. My unit had to be programmed a few times as it was unstable. If I were lying down, the buzz was more or less consistent but everytime I moved, the intensity changed and it became stronger. I was always trying to adjust the unit but still the intensity varied. I got so disgusted with it, that I just plain turned it off, No stimulation now, I discussed with the doctor where I live now and it is recommended that it be taken out. I also asked him if there was another unit that is a lot better than this one. He did say that there was a new one and many times better than the one I have. I am thinking about it and looking up video's on you tube with patients telling like it is. Fortunately, it is non biased. I looked into the manufactures site and watched the video's there too. There were about 6 patients and all said it is just wonderful and took away their back pain. Not one negative review and of course I expected that as negative video's would not be shown. Typical advertising. I cannot put the manufactures site here as I did previously and the monitor deleted it. You can find out more about it as most pain doctors would have that information.
Your case is a lot different from mine as you being in a lot of bad pain and movement is very hard for you. I don't know how long ago that you put the unit in but I would imagine the pain of the incision site would be healing. There is also a large lump on my right side as I can feel the unit. I can sleep on it though. Personally, I am not happy with the SCS because it is no use having it if you can't use it. What bothers me most is that many doctors and mfg reps give you the reason why it will work and how happy many patients have it. That is a bunch of bull. The cost is extreamly high as mine with the trial and permanent one cost $200,000 for a 3 hour stay in a surgical center or hospital. I had insurance so all I had to pay was $150.00. I am on Medicare. When I moved to Seattle, I had to change insurance companies and I would have to pay 20% co-pay of what the surgeon, anetheiseologist, and hospital stay which is rather costly. Even if the doctors are paid 60% of it, then I would still pay 20% of the balance. 20% of $120,000 and you see what I mean.
Meanwhile, I do hope you can see your doctor soon and get things done for your benefit. I do wish you all the luck and next time, I want you to say everything has been taken care of.
Hi Cindy and no I am not happy with it. It has been turned off 6 months now. What a waste. The wonderful things that they say about it doesn't hold water. It's like anything else, sell and doctors make more money. Unfortunately, this is what medicine is today. Exhorborant prices and sometimes not enough patient care. This I know because i have been through it. I also had and still have great doctors who cares. Personally, I really have to think about doing this new stimulator. What I would do is go through a trial once again and really evaluate it. If I decide not, then my doctors recommended medical marijuana. That is costly as well for certificate, exam and the pot itself. There is an oil based product you place on your tongue which is supposed to work quite well. If the price is too high, then I'll just go back to Morphine and Oxycodone. I tried to wean off it but I get withdrawl symptoms. I also would be in a lot more pain. Where do you go from here, who knows! Well, thats it for now and take care and please tell me what is happening with what you are going through. I hope for the better. By the way, you responded to me immediately after I wrote to you. 
Hi Mel,
I live in Connecticut and I also heard good things about my SCS from the rep went on website same thing but I did see the rate of no effect, so I took the plunge to do it, but omg I can feel around the battery shrinking and it hurts like hell plus its all bruised around it, when I have to charge I have to lay on my back and the pad for charging makes my back hot but I can't feel it cause I have no feeling there, cause they put it in the same spot the took for my bone graph for my fusion and an ganglionectomy which didn't work but fixed the burning sensation I was having, so now I have a dead leg, I can't feel from my left butt check to my foot, I'm so fed up with the rep saying give it time can't keep changing my program my nerves have to get used to it. Bull this is just not working out for me I'm actually in more pain plus I'm taking more meds than ever, tried to go walking around the grocery store couldn't do it, I was actually sitting on anything possible lol not funny but I had to just get what I really needed leave the cart and go home and laydown, its getting so frustrating I really want to take it out its been 3 months it that's what they told me it would take to heal, so basically I'm pretty much bed ridden and don't want to go out at all knowing that if I go out I have to have my meds on me cause when it flared up omg the pain was so bad I literally started to cry in the store, I felt so embarrassed something they said would help me isn't doing a thing, I have a appt. With my pain management, which that's what they throw you in when the neurosurgeons give up on you, so your in palliative care, which means make you feel as comfortable they can get you on meds. So frustrating don't see the doctor I get to see all APRN's which every month I go its a different one. You just get so upset you want to just throw in the towel, I do want this out a friend from here told me about another procedure which I'm gonna ask whoever I see ask my doctor about, its like the SCS but helps for the nerves its closer to all your nerves in your spine, I looked it up it sounds a lot better than what I have now and I think that's what I need since its all nerves that is causing my body to be all hurting, I walk with a left limp and I get stared at. People don't understand what we go through day and nights we can't sleep and your so tired you finally drop from exhaustion. So inbox me so I can give you the new one that's finally come to USA soon.
Take care and hopefully some pain free days!!
Cynthia(cindy)
Mel,
Yeah I forgot to say I also have medicare on disability, plus I'm on state as 2nd insurance cause I can't afford to live off what they give me, Connecticut is so damn expensive, I need somewhere warm not rainy and snowing ugh....the sad part is that my back can tell me a few days before bad weather lol I'm the weather person...my trial and surgery was about the same as yours, if not more, I couldn't believe the pain was when I woke up, the place I went is a surgical center and its like cattle being moved in and out. It's so sad you get your hopes up and boom crashes right in front of you, I was trying to stay so positive, but with no luck of course, I feel like I took 5 steps back.
Stay in touch
Cynthia( Cindy)
Mel, My husband had the new approved 2015 Nevro Stimulator put in a few weeks ago and it had to be turned off 4 days post op because of the burning pain it caused. He sees the doctor tomorrow for next steps.
Lisa,
Is it in the battery site and down that leg?
Cindy
The pain is mostly at the battery site and it isnt even turned on. He has had an issue with burning pain down his let prior to the implant. This device seems like a big waste of time and money.
Yeah I feel the same way, was of sleepless nights and more pain here. When you see your doctor again let him know cause I had it and it was my nerves they got cut by the disc exploding, it was the worse pain ever it felt like someone had a torch under my foot and it traveled up my leg, my 2nd Dr tried the ganglionectomy to see if the nerves would reconnect it didn't work just left me with no feeling down the leg, drop foot and very hard to walk, I have to think while I'm walking. A few times I actually fell due to the carpet, floor or stairs I didn't pick up my foot far enough, still alot of pain but its in the bone very hard to explain, cause of the no feeling in the leg. It does suck but at least I can some what walk and I'm not in a wheelchair as one Dr said I would be by the time I was in my 40's, I'm doing my best not to end up in one, I do use the carriages at the stores that are electrical scooters. I can barely shop now, this scs was a big waste and more of a mess for me.
Best wishes to your husband and I hope he feels better soon.
Take care
Cynthia (Cindy)
I am so sorry to hear this. I have a feeling that there are going to be a lot of unhappy people after getting suckered into getting this device. They told my husband he would be back to work a week after and off pain meds - Ha Ha What a lie.
Lol yeah that told me I wouldn't be on any meds too. It's a joke!! And the reps are mean...haven't heard from him, so I'm just gonna tell them to shut it off and take it out, I'm done with this feeling...