Spinal cord stimulators

Hi Krissy

Thanks for your reply.

I had mine done in guys hospital in London, this is just the trial which they said lasts anything from 5 days to 21days depending on what they want to see and results in getting, where did you have yours done.?

I had mine done under a local but I am sure if I had it permanent then it will be sedation or a GA as they place the computer under the skin, they didn't say where they will place it but I have seen people say back, tummy ect.

I have seen a few chats before regarding pain around the battety sites but I can't recall what people suggested or what the problem was caused by, possible a reaction to the metal.??

I have never had headaches before other than just the normal ones when a little run down, this feels like I have been smacked with a hammer and the light causes me to squint, the surgeon said this sometimes happens and should go, but that was last Thursday.

I hope your pain settles and that you get the results you want from the device. Do keep me posted when the device gets turned on.

Best regards

George

Hi George

I'm really sorry to hear you are feeling like this.

My permanent nevro HF10 was done at guys aswell..I was under Dr.lambru.. Having tried botox for migraines.. Didn't give much improvement.

They didnt offer a trial temp implant..they went straight to the permanent implant.

My device is implanted quite close to my spine..I thought it wd be more by the flank..the fatty part..my device is soooooooo visible..and they arnt small devices! Keep on at them and contacting them if you are struggling and don't feel right! You no your own body...I Met another girl on surgery day who had the permanent fitted straight away...please keep in touch

And I hope you start to get some relief 😌

Thanks Krissy.

I am under Dr Al Kaisy but was operated on by Dr parmigani ( not sure of correct spelling).

I am going back Friday and I am seeing the pain nurse and Dr Al Kaisy this time so hopefully they will give me more info in to if it's working or if they need to change it.

I didn't realise they did a implant and then turn the device on at a later stage, did they say why it's done like that.

Best regards

George

I too am under Dr.al.kaisy.. He is the implant surgeon...he did mine as far as I am aware...was supposed to see him before and after surgery but it didn't happen! Do you see Roy the pain nurse?

Apparently they don't turn the stimulater on till end of week 4 so this gives your body time to accept the implant etc...also if there is any infection or allergy this will be sorted out before the switch on...

Yes I was a little surprised I had a different surgeon as dr al kaisy said he was doing the op, but one surgeons as good as the other!! I hope 😀

I have Katie and Steph who have looked after me and they have been great and very helpful in getting me seen and devices changed ect.

Did you do the 2 week input program, ??

:-)

That's good they are supporting you.

No input programme.. One tech day which all the op was explained.. Saw psychologist.. Neurologist signed forms..Bang.. Done..then op 2 wks later! Lol

Lucky you, well kinda :-)

The 2 week input program was to me a waste of time and NHS money, had to sit there and talk about feelings, learn how to breath to help with pain, get asked what pain is to you.

Total waste, pain is real, pain hurts, and to me no matter how much you talk about it and have breathing patterns and let your mind drift, none of that gets rid of the pain. Would rather of just had what you did.

:-)

I had the Boston Scientific one first and it wasn't working right, so they changed to NEVRO. I wish, I would have told them to just take it out completely. When k see the neurosurgeon on the 30th, he's the one that did my spinal fusion. I'm going to ask if he thinks if I should just have it taken out completely, since I haven't really been using it, and it's just causing more pain for me. I told my sons father years ago when they recommend this procedure for him absolutely not, then I went ahead and did it like an idiot. I guess I was looking for pain relief. I just turned 33. I injured myself when I was 27 at work, and it's something I'll have to live with the rest of my life 😔. Best of luck to you!!

Wow! That's intense stuff for 2 weeks!

I agree...what a waste of NHS money and as you say pain is painful no matter how they try to dress it up!

My battery is so visible which I'm not too happy about..I feel it should have been placed into the fatty part and not the narrow part of my back!

How are you feeling?

Hi Jenjo683,

I'm sorry to hear that the SCS isn't working for you. I only found out about SCS a couple of months ago and had pinned my hopes on that but from what you're saying and the other things I've read on here I'm not too sure now.

My surgeon wants to fuse my back as decompression and discectomy didn't work but I'm against it as a friend of mine has had five surgeries at the same site.

iI'm under a new consultant that has talked about the SCS.

My pain varies from day to day from just the lower and very weak legs to pain in lower back and un both lega at the same time.

Most days it's probably 7/10, over the years my pain threshold has has increased, but when it's bad I'm laid up in bed.

Keep us updated and I sincerely hope that your situation improves.

Regards,

Albero

Anyone getting a SCS should make sure they connect with a rep who is available to be there when you have questions and need an adjustment. Adjustments are necessary as your body heals. But not all reps have the same experience level at changing settings. I was sent a rep who was unable to get the settings back on after shutting them off. Instead of calling for help she just left and went to her next appointment. I have good pain relief with my SCS. I just have an issue with how the reps play down what the patient says. And I feel hospital staff is responsible for knowing about the surgery that the patient has so they can answer questions and provide appropriate post op care.

Sorry to hear that Jenjo, from what I have read in other forums this did seem to be the biggest problem. I met a couple of people while at the hospital and one had it in there tummy and had no issues and the other in the back similar to you and had the same problems.

Can I ask other than the site problem did you get any reduction in your pain.??

Regards.

George

Hiya

My battery is soooooooo visible it's unreal!!! It's painful aswell... Day 10 at the moment.

I look like I have a growth on my back!

It's a nevro aswell.

..was hoping it may get better but quite concerned

😞

It does seem to reduce my pain 35-40% max

Why did they place your battery in your back, mine is in my upper buttocks close to my hip. I can actually sleep on my sides and back with no issue. I can feel it and I can tell it's there but it is not bothersome.

Jennifer I am sorry they put it in your back, my doctor said that is the worse place to put it, you don't have enough fat to padding it back there, so he says the buttocks just below the hip bone is best, that is where he put mine. It stayed sore for several days but I can now sleep on it without any problems. I would have them put it in a different location to if you can. Wish you the best of luck.

Sorry Jenjo683 spell check corrected you name to jennifer

Hiya

I'm 14 days post op and my battery looks dreadful!!!

To say it's very visible is an understatement!

They placed it in my back next to my spine...where I have no fat!!

Due to go and be switched on in two weeks time so will speak to them then.

I can feel.every part of the battery through my skin...if I wore a dress you would see the battery really badly!

Gggrrrrrrr

That's fine. My name is Jennifer anyways! 😁

Mine is right above my butt, still it's not right. Since I am still losing weight constantly, it shows more and more. Even the Dr. that put it in said if you are still losing weight you can't have it there. I told him that before I went in for the procedure. Why don't they listen??

Don't give up. If you can get the surgeon to move the box to the fatty part of your upper buttocks, then it would be more comfortable. Some people have it in the belly but it is harder to pick up the signal in the abdomen. If the surgeon who put it in won't change it, then find another surgeon. Anyone with a lot of experience would not have put it above your waist. You have to take the bull by the horns and tell them what you want. The surgeons just put them in. They don't have to deal with it daily like you do. I would even contact the company who makes your stimulator and tell them how it was placed and request a referral to someone who knows what they are doing. Avoid those who think spinal stimulators are the cure for everything but don't even know how to properly place it surgically.

Thank you for your help...

It was Dr.l.kaisy who is the implant surgeon.

I have not fat there at all..walked around the supermarket this evening and that was painful!

It's madness...I will talk to them when I go a week Thurs to be switched on....they offered to give me lidocaine patches when I see them next...how very generous of them!

Hi Paula,

Is the SCS wirking for you?

Has it decreased your pain and improved your quality of life?

I hope you are one of the success stories?

Regards

Albero