Hi all, last week I had a low frequency spinal cord stimulator fitted. I started getting high BP, really bad headache and feeling sick so they kept me in. The surgery was done under a local only so no GA or sedation. I had to rtn again yesterday as I was still getting the headaches and sick feeling but I had it on a high setting 8.6 out of 10 as lower I couldn't feel anything.
They have now changed the leads and device to a nevro HF10, I am still getting the headaches and they now can't do a MRI as the leads are not compatible. I am not feeling any change with the device and it isn't assisting with the pain, I know it's only been a day but I don't know what I am to expect from it.
They want me to keep the trial going for 2 weeks.
Has anyone got any experience good or bad they can share.?
Thanks
George
Hi
I had a permanent nevro h10 implant fitted.. Without any trial first.. 10'days ago.
I had sedation for the permanent implant and am currently experiencing alot of battery site pain.
My implant isn't due to be switched on until 4 weeks after surgery..29th September.
Having headaches but they are my normal migraines..
Is yours just the trial implant and where did you have this done?
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, ??
:-)
I had my NEVRO implanted June 21st here in the States. I have had nothing but problems with the implant battery site. I told them from the moment I came out of surgery that it was too close to the skin. They tried to brush it off. After a 2 month check up, oh maybe you need to see a neurosurgeon and see if he can do a relocation of it and put it in deeper. Mind you, I have already lost weight since the surgery. You can actually see the outline of the battery in my back. It's to the point where I don't turn it on anymore because the battery pack it's hurting me even when I have it on. Good luck to everyone that has the surgery. I just want this out!!
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
Yes i had alot of trouble with sharp jabbing pain down my legs and arms. I had to have it removed after a few months.
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
😞
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!!
It does seem to reduce my pain 35-40% max
I recently had the permanent nervo hf10 implanted 2 weeks ago, I did have severe headaches for about a week but it went away. I do know when you have the permanant one in you can have an MRI of you head and the extremities just not your torso. I had to have a MRI of my head yesterday becuase I have MS. If you can hang in there I would speciallynae if it is helping with you pain. It has made a Hugh difference with mine. I never thought I would be this pain free. The only thing my SCS has not completely helped me with is my severe hip pain. I wish you the best.
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
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?