[Rrae]

In responding to bobbob's querry regarding problems we've encountered, I thought it would be good to have an easy-to-find thread on this topic for those who are wondering what might possibly go wrong with the SCS.

I'm not a 'negative' person by nature, but I think it's important for folks to get a good perspective on this. Maybe we should also start a thread on positive testimonies as well

Rae

[leiea]

good idea rae

so the only problem i encounterd so far was electrode dislocation

xxx

[Sophie_]

Really good idea Batman!!

[Rrae]

Thought I'd copy this over here rather than retype

One of the biggest culprits which requires repeat visits is lead migration.
Myself included, but I confess that it was my doing. I overdid it as I began to feel better and one of my leads came loose from the dura and slid down 6 inches! I don't know HOW long it had been since it happened but when I finally got a lumbar xray, that's when it was discovered. It took some prodding to get anyone to give me the time of day. Lord. But (get this) >> I was doing just fine with the one good lead so we just decided to have the bad lead taken out rather than go back to the OR to fix it. I'm amazed that one lead is doing so well in covering my bilateral leg neuropathy-type pain.

Other issues can't be helped, such as scar tissue or lead breakage.

It is very disappointing to me that patients don't seem to get very good follow-up care. Some do, but alot of people are left feeling like the lone ranger once the high-dollar procedure has been done.

I would venture to say that communication is key, especially during the initial implant and getting coverage where it needs to be. Precision is paramount for a successful outcome. But it's kinda hard to be precise when you're in the twilight daze undergoing this radical procedure.

[JoanB]

Thanks for bringing up the issue of follow-up Rrae...I hadn't thought about that. But how do you know if the people you've chosen are going to be good about that or not?

[Rrae]

Originally Posted by JoanB

Thanks for bringing up the issue of follow-up Rrae...I hadn't thought about that. But how do you know if the people you've chosen are going to be good about that or not?

Most legitimate practices will provide references (with their permission) of patients who had this procedure done. People in general are more than happy to share their experiences. Also, it's pretty easy these days to check the reputation of a doctor or clinic to see if they've had complaints filed against them. In smaller communities, word of mouth can be helpful.

I wish I would have specifically asked about follow-up care. I guess I assumed this was part of the procedure. If I would have had a 3month or 6 month follow-up, my lead migration would have been detected much sooner.

I hear alot of people saying that they feel like their doctor didn't seem to care much once they got their huge chunk of $$ - and I do mean HUGE.
Not everybody tho. Some people have a fantastic medical team.

My doctor is extremely arrogant and I always felt rushed.

It seems there is no such thing as too much researching when it comes to this.

Rae

[Sophie_]

Hi Rae,

Well said! There are so many bad Dr's out there who just don't care about their patients, it's all about money, nice cars, golf. Then again there are alot of good Dr's who do care and it's very obvious when you meet them. I'm lucky my Dr is one if the good ones but I've seem way too many of the bad ones!

Thanks for bringing this topic up

Sinead xxx

[pooh_ac]

Has been battery life until the last 6 months. I am currently finishing year 5 on my rechargeable unit, my understanding is the thing shuts down in year 8 or 9. It will need 1 of 2 things at that time.... A new "battery pack" or an entire new unit. I am researching "updates" for my own edification. Will study "harder" as the time nears for a change....
Oh yeah I did take a nassty fall (dislocated my shoulder) which did "dislodge" my leads the fall before I got this unit.

[JoanB]

Originally Posted by Sophie_

Hi Rae,

Well said! There are so many bad Dr's out there who just don't care about their patients, it's all about money, nice cars, golf. Then again there are alot of good Dr's who do care and it's very obvious when you meet them. I'm lucky my Dr is one if the good ones but I've seem way too many of the bad ones!

Thanks for bringing this topic up

Sinead xxx

That's how I feel about the guy who did my hip replacement two years ago. It still hurts, and since I made the mistake of mentioning my periepheral neuropathy to him, he blames my pain on that. Nice try, but I can distinguish the difference between the two. And before anyone asks, no, I haven't found out if the hip is one of the recall ones--I'm afraid to, as the only remedy is to go through the whole surgery all over again, and I just don't know if I can take that emotionally or financially right now.

[Saffy]

Hello all. When I was fitted with my trial stim on 18th May this year, I was encouraged to immediately use it and try doing "normal" things .. like walking and pottering about the hospital.

Right away I noticed that the stim not only stimulated my left leg and buttock, but also my right leg and between my legs.

I was told not to worry, that this was VERY early days and hopefully once the leads had settled in, things would work out ok.

Sadly, this hasnt been the case and therefore I have been unable to use the stim hardly at all because of the sensations .. when I did it has caused paralysis to both legs ..

Am at the Neuro Surgeons on Thursday next week .. having been referred by my Pain Consultant, as he feels a paddle lead might give me better coverage ..