SCS leads
 

Hi everyone,
Thank you for all your wonderful threads. I live just south of Perth Western Australia in a small country town. I traveled up to Perth 3 months ago and after trialling the Boston Scientific implant I went ahead and got the SCS permanently implanted.
Everything that possibly could go wrong did and I had it removed only 2 months later. The sales rep had set mine to the coarse setting (the most intense) I think it was a personality clash a huge personality clash, maybe it's because I have visible tattoos. Luckily I saw a relief rep who actually saw how unprofessional he had acted and his funny games like calling 8 of my programs "Bottom" then locked me out of some of the settings so I couldn't change the name :( It was in very poor taste! I'd love to report him, but I'm too afraid of the back lash and what the outcome won't be worth going through that. I had a melt down or breakdown as it was.

My question is has any one had their leads implanted permanently under their skin and not not in the spinal cavity? Or would that is used only on the trial? Every time I lent back on a chair I got zapped like a cattle prod. (Already it was on the most intensive setting).

Thanks in advance,
Julz :)

How horrid
 

Hey Julz, so sorry you had to go through that. I don't know why some people work in the pain management field, surely they should have some sort of test for compassion before they employ these cretins.

I'm a bit confused, you said you have had it removed, but you are asking about leads, are you worried a lead has been left in? Anyhow it definitely shouldn't be zapping you. Do you have a good relationship with your PM? I hope so, travelling from down South to Perth by car or train is tough when in pain.

Hi Pam,

I think I read in your thread that you've met the Boston Rep with your leads?
Mine was taken out about a month ago, but I just want to know if it's normal to have the leads placed under the skin for a permanent implant?
Dr Holthouse didn't believe that the headaches and nausea were related to anything but I thought since I kept knocking them I could have got some migration or something? I thought I was going crazy as these symptoms I told were unrelated to the implant and I was so glad after reading a few threads it was quite a common symptom.

I've asked to be referred to Fremantle Pain Clinic as there's nothing more Dr Holthouse can do for me at this stage and medication is about all that will control the pain. So fingers crossed they might be as to help. I've had the facet joint epidural injections and laminectomy. I haven't had fusion as I was referred by Dr Holthouse to Dr Paul Taylor in Murdoch for a 2nd opinion. I was told to try leave it as long as I can. That the stability of my spine could see me going in for more operations after the initial fusion and I'm not sure myself I could go through it.

I have moderate disc degeneration and arthritis and shows a lot of injuries plus nerve related having Spina Bifida and extra transitional disc. I was 13 when I was seriously hit by a car (which was never followed up by my mother) and years of horse riding and abusive ex husband unfortunately took their toll.
Coming up to 50, my back is rapidly showing these efforts now. As a youngster I always had back pain, but now it's getting so debilitating and the pain is more than I can bear. I've always worked and been active and have raised 3 beautiful on my own, so it's so frustrating and upsetting not being able to work full-time any more. (I'm looking into a uni degree now).

Thanks
Julz xox

Sorry my *3 beautiful children :)

Boston rep
 

Hi Julz, no I haven't met the boston rep! my current SCS is a Nevro Senza HF, it's high frequency and you feel no vibration whatsoever. My trial was in November and in December the permanent was placed. They had difficulty and the op took 3 hours of pushing and pulling and only 1 lead placed as couldn't get the other one in. I'm supposed to be referred to Holthouse at some stage for a paddle implant. Nevro don't do paddles so it's a Boston that they are talking about implanting and my Nevro rep will work in conjunction with the Boston rep to manage it.
However in the meantime, my PM is doing disc injections to determine if I need another fusion done on L2/3 vertebrae above where they did the double fusion L4/4 S1 last year in June. And, as I haven't heard from my Nevro rep about the paddle I just don't know if they themselves know where they are at with it. My PM rang her while I was there and left a msg for her to call him back, I texted her and have heard nothing back. I know she is busy as two other reps finished but crikes I had the implant done and do still have one lead in and I'm sure they are supposed to keep in contact with me...
Re the lead, my battery is in my right butt cheek and the lead is in under the skin leading from the battery up to Vertebrae T9. If you go onto YouTube you can view a small 4 min demo that explains how it's done. Implantation of Spinal Cord Stimulator by Joe Ordia, MD - YouTube

www.youtube.com/watch?v=u4gQ-JpYyxs

Have a watch of it and it explains how it's done and also shows you. It's not to graphic, but be prepared for the cheek clenching when he is pushing through the flesh to connect the lead to the battery...
As you had the Boston, can I ask what model you had and was it percutaneous leads or paddle. Also could you feel the vibration. I really don't think I will be able to tolerate vibration so it's important for me to know before they go ahead with a paddle implant as I won't be able to trial it.
I think at Fremantle pain clinic they team you up with a pain management specialist and a psychologist. It will be easier with them in the same premise, my Pm is in South Perth and my Psych is at Hollywood hospital, although I haven't seen her since June last year. Why they feel the need to go back into childhood past is beyond me, it's pain we we dealing with...
So what is Holthouse like? my NS is Malone and he is fantastic! best surgeon I have had in years and he takes the time to explain to you and your partner what he is doing and what's going on. He also has a great old fashioned physio team he works with and they believe in small muscular physical development to provide support rather than relying on braces etc.
With the everything possible that could go wrong go wrong, I totally get you, I'm in the same boat and very nervous about what more can go next time. I've had a number of stuff ups with surgeries and am definitely not up to facing another merry go round of hospital stints.
I haven't heard of Paul Taylor, hope he does well by you:hug: