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
shirley7000 khi
Posted
Greetings,
I'm currently on Day 4 of a Nevro HF10, and so far I haven't felt a thing! I do know that SCS don't work for everyone. When they don't work, is it typical to feel nothing? Or do people feel some kind of sensation - just not the right one? I'll be having an x-ray tomorrow to see if the leads have moved. I'm really anxious about this, had tremendous hopes that this procedure would be "The One" for me. Thanks!
(A little background on me - I've been in severe, centralized chronic pain in my S1/S2 area for 7 years. Have tried everything - ALIF/PLIF at L5/S1, nerve ablations, epidurals - you name it, I've probably tried it.)
I wonder if others who have
paulbklyn shirley7000
Posted
Hi Shirley
I'm in NYC had nervo implanted about 6 months ago,
still on the same program as I left the hospital.
I'm suffering from PHN for about 3 years.
Have nerve blocks twice, my present pain dr ( 4th in 3 years )
gave me shots but in a different way getting some relief as he
also increased the vicodin.
My main concern was sleeping, as night time came around, the pain would go from a 4 to a 8 like electric shock treatments in my neck.
Sleep is a little better but i'm on to many meds.
The people at Nervo are very nice tried many times to help me,
it was the dr that was money hungry and didnt even look at me
when time came for an exam. He didn't check the incisions until
I asked him to.
My present is rate top 3 in NYC and he is trying
Wish you all the best
They can reprogram the Nervo call and ask them to.
You have to be your own Boss stick up for yourself
God Bless you
DJ1976 shirley7000
Posted
Hi Shirley another New Yorker.
Are you in the trial? Or is it an implant. I can speak about the trial, which I participated in. For me the trial did not work. I became, in our area where my trial was, The only one for whom the NEVRO never worked. It was not for lack of reprogramming. The rep from this Company went above and beyond calling on the powers to be to come up with programming that they usually have to use. After 8 days everyone realized that their product was a no go for me.
Once you get to about day 6 and they tried a number of combinations, they agree, that is Pain Mgmt., the rep and of course you. You will feel nothing, no sensations either tingling and pulsing. If this your case, if it is a no go, ask to go into another trial. The next one may work,
Don't give up. If you don't fight and speak up for yourself, no one else will. Good luck and keep us posted.
Dee
shirley7000 DJ1976
Posted
Hi Dee,
Thanks so much for the quick response! Yes, this is just the trial (I'm sorry I didn't mention that.) I'm on Day 5, and we still have 2 days left* I haven't felt a single thing on Program 1 or 2 - so onto Program 3.
Thanks for letting me know that you also didn't feel anything. That's been my experience too. I assumed I would feel some sort of sensation, good, bad or indifferent. And I agree with you - the Nevro reps have been amazing.
Dee, did you go on to try other SCS devices?
*This morning I woke up with extreme tenderness at the sight of surgery. It's worse than the surgical pain! So I'm likely going to need antibiotics, and who knows, perhaps they'll remove the wires? I'm with Kaiser Permanente, and they didn't give us antibiotics, which didn't bother me - until now. Will probably be leaving for the doctor soon...
DJ1976 shirley7000
Posted
Hi there. Yes I went thru the Stim with St Jude's. It is a two wire stim. At day 6, with a huge thank you to my wonderful, who the day before came to my home and wiped out the programming and started from scratch. The next day, I walked to my daughters and back. The pain was like a hot knife in my right butt and down the leg. After 20 mins. The pain was gone. I was so excited finally after 3 years no pain. Returned to the PM and we went to see the surgeon for consultation. Then on March 2 the implant was put in. It is and looks like a paddle. As of today, I have had absolutely no pain reduction whatsoever.
If, you should go for a trial with St. Jude/Abbott, Abbott bought out St. Jude's stimulator, make sure if you have positive results with the leads, that the surgeon WILL SURGICALLY IMPLANT THE LEADS AND NOT THE PADDLE. I didn't realize that I could have asked the surgeon about the difference. I was led to believe the paddle was more effective. NOT IN THIS BODY. So when I see the surgical PA in two weeks, there will be some tears flowing and some anger that this, too, is not working. Frustration seems not a strong enough word to use.
Go in armed with knowledge. Go to their website an look and read everything beforehand. Scroll through all the different posts. I have a post I started about Trouble Walking after stimulator implant. You are not Lainey. Check out the discussion to see if you can find help. We have a patient who herself is a retired PM Dr. She is very helpful.
Good Luck in your quest for pain relief. We are all on the same journey, but we all have various degrees of relief. Keep us posted.
Dee
shirley7000 DJ1976
Posted
Hi Dee,
Wow, that almost seems unethical to switch up the wires with paddles - it almost sounds like a bait-and-switch! At the very least the doctor should have at least informed you ahead of time... what's the point of doing a trial if the doctor's going to implant something different? Ugh, I absolutely hate that this kind of thing still happens in this day and age.
I saw my pain management doctor yesterday, and she agreed to let me try the Nevro until Monday. The Nevro Rep also reprogrammed my unit. (I asked about parasthesia, and she instantly programmed that so I could experience it. I had a nagging suspicion that my unit didn't work at all - but once I felt the parasthesia I instantly knew that yes - it works!
My pain management doctor also gave me some very good advice. She said that if my pain relief never hovers over 30%, to not be overly optimistic and say that it's 50%. She said that when relief is only 30% it doesn't last long. This was something I needed to hear. Like everyone else, I'm desperate for any relief, and because I would've been happy with 30%.
She also said that this is not the end of the line - there are other options. That almost made me cry - I didn't realize how anxious I've been for this treatment to work, and a big part of that is because I feel like I've already tried everything.
By the way, I think I last wrote that I was afraid I might have an infection. Five days after my trial scs implant I had severe pain that seemed to come out of nowhere! But thankfully that was not the case. I must have slept on my back without knowing - who knows?
I'm so sorry Dee that you're going through this. Please let me know what the doctor says. I hope you give them hell. And thank you for all of your wisdom and experience, it has helped me tremendously!
Shirley
DJ1976 shirley7000
Posted
Thanks Shirley. I know when I started the trial, they said if I had good luck,the surgeon would implant a paddle. Even my husband who went to all the pre surgical consults himself never made the connection that the paddle could not accept the positive results. Never in my conversations, do I remember anyone saying that the trial leads could not be implanted. Only that the surgeon uses then paddle as it has many various settings.
when I see the surgical team, I will be armed with 1) my anger that two months in an you're finished, 2) questions of going back to square one in programming 3) most important a different rep. to do the programming. It should be a very interesting meeting. If all else fails and nothing more, when will you remove the battery and paddle. Grrrrrrrrrr
Dee
Jenjo683 DJ1976
Posted
I have had my stimulator corrected 3 times since December!! This last time, I thought for sure it would be the last time, but nope! I get more relief when the darn thing is shut off. When Nevro called me today, I expressed that to them. They asked me if I was willing to go in for reprogramming, and I told them they have to do it on my schedule now, since I am scheduled to return to work this Monday May 15. I said either you can do it tomorrow, or you will have to wait until the 31, when I have a drs appointment. They were like let me check with your rep and see what we can do. I am so sick of this thing. Now, I am all scarred up, from the multiple surgeries, that even the tech taking the X-rays made a comment about how bad my back looked. I'm only 33, and have to deal with 8-10 scars from all the surgeries!
ellebe DJ1976
Posted
Hey there. Please elaborate on the option of perm leads or paddle. I hadn’t any knowledge of this so my neuro put in a paddle. Pros & cons? ??
enujgg khi
Posted
Hi,
I'm sorry your husband is in such pain. I am in a similar situation, and have to use a rolater to help me walk. I have severe spinal stenosis.
What I really want to tell you is that I attended the Pain Clinic for years and the Doctor tried all times of treatment and tablets. However, none seemed to do a lot for me. He said the only other thing he could offer me was a Spinal Cord Stimulator. I have this done and had a trial period of 2 weeks. I'm sorry to say it done nothing for me. It has a tingling sensation, but the pain was still as severe as ever. After the 2 wek trial period I had this removed.
If your husband decides to have this done, I do hope it really works for him.
MrsGritzLovesU2 khi
Posted
My husband had a Medtronic Spinal Stimulator practice lead wire accidentally nick
a nerve!!! He screamed bloody murder. The Pain Mgmt. Doc finally pulled the wire out.
To this day I am married to a man that hasn't had a real smile or a day without
excruciating pain.
The stimulaters can work. Get a good surgeon with a history of success?
Elteec98 khi
Posted
I had my trial two months ago and is was so easy and painless. I have spinal stenosis, arthritis, fusions, 8 titanium rods. That relieved my pain by 70%. I had permanent SCS ten hours ago. Boston Scientific and can get MRI's. So far it is virtually painless. I'm 58 yr old male injured in combat 1991. A little tired today. Minimal pain where the incision was made to put in leads and implant device. The 3" incision made on lower left back for the battery I can't feel at all. May be a little more sore tomorrow but so far so good. In fact, I have taken 50% less meds today than normally. With original surgerywhich was scheduled for three hours lasted 8.5 hours because so many things didn't show on MRI and bone scan but discovered when the neurosurgeon opened me up. I only have one program to use until followup next week where additional settings will be inputted. My pain was terrible for many years. Was taken 90mg of Morphine sulfate and 60mg oxycododone daily to keep pain level at a 4 on 10 scale. We'll see what happens in the future but my goal is to get off all opiates. I'm glad I did this.
mary_ellen92416 khi
Posted
Hello hi
Of course everyone is different but you can do a trial for SCS. Burst DR is the latest.
Unfortunately my brothers back per the doctor said he looks like he was run over by a truck since he was a fireman for so many years.....ceilings falling on head etc. He has a spinal fusion and laminectomy but still was suffering. The SPS did not work for him BUT depending on the injury they results was very positive for the majority of patients. You can do a trial for 7 days without the surgery and see if it’s helpful for him. It’s callef Burst DR. Best of luck - prayers are with you
melanie_2013 khi
Posted
Boston scientific is the system I have.
I have severe nerve damage under my left ribs. Every breath I take is painful. I will say a scs takes some getting use to. Once you get it you just have to have a new normal which will include charging your battery and knowing your limits.
My reps at BOston scientific are great! It takes a lot of patients on both sides. I would research pain doctors and find one who takes time to exsplain the surgery. Your husband should first get external test model. I knew the right away it was right for me because of my pain relieve. My pain was not gone but I could tell a big difference.
I will say i believe you get out of it what you put into it. In other words pay attention and do exactly what the doctors say as far as limitations post surgery.
After you begin to heal start getting your programs set. I have 6 programs depending on the location and severity of my pain is the one I choose. Along with my meds.
Some folks have had terrible problems with infections and arm and back pain.
My advise is to first google the operation so your husband understands the process. If you decide it’s for you don’t settle once you get it. Make sure you take time and get the programs most helpful for him. It important to know what feels good standing may be to strong setting or laying. That was eye opening for me!! Haha so keep that remote handy!
Some days I just can’t get relieve. I told that to my rep I said it seems when I change programs and switch from one to another so I go from nothing to on. It seems that burst eases the pain. So he programmed me a setting called burst!
These machines are remarkable in my opinion. I will never be cured. I will always depend on a machine but has given me hope and I don’t have to stay so sedated that life passes me by.
Good luck to you and your husband.
Elteec98 melanie_2013
Posted
I've only had my perm SCS for just over a month. Initially, I had rib pain when turned up. But, once I got reprogrammed all those issues went away. I'm just having a hard time getting it to take care of my sciatic pain.
Elteec98
Posted
socksmom melanie_2013
Posted