Problems encountered with SCS...
 

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 :o

:grouphug: Rae :grouphug:

good idea rae

so the only problem i encounterd so far was electrode dislocation

xxx

Really good idea Batman!!:p

Lead Migration
 

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! :eek: 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.

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?

Check References
 

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.

:hug: Rae :hug:

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:)

My biggest SCS challange so far
 

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.:eek:

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.

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 ..

Hip Pain - neuropain
 

Hi Joan

It can be typical of doctors to blame you're neuropathy pain with your hip, they are very different types of pain and the hip pain is localised to one area am I right? I have to tell you my aunt had one of those dodgy hip replacements and a year later she had to have it all done again... it's been 4 years now since that second surgery and she has never been better, she does anything and everything she wants to do. She definitely didn't want another surgery as it took alot out of the first time round but she just couldn't accept bad health, she couldn't accept the pain so she did it and she's so happy she did.

If your hip Doctor is blaming your neuro pain for your hip then I would think about getting another opionion, as you say yourself you know the difference and why wouldn't you.

Wishing you well.

Sinéad xxxx :)

Yippii
 

Hi Karen,

That's great news about the appointment to see the consultant about the paddles, it's about time to you're getting sorted from May to now is a long time.

Let us know how it goes will ya?

Chat soon hun,

Sinéad :grouphug::grouphug::)

Paddles
 

Hi Saffy-

Glad you are seeing neurosurgeon about paddle leads, as my situtaion was originally addressed by paddles, and I have been a "happy camper." May the discussion go well, and may paddles, if tried, prove to be the improvement you truly need to have precise coverage without uncomfortable anomalous side effect coverage.

Hopin and Prayin,
Mark56:hug:z

Bear hugs for both of you:

http://i297.photobucket.com/albums/m...bearhugs-1.gif

...which are nice unless they're real bears :eek: but they're not, so we're good.:)

Problem with SCS's
 

Hi guys,

Unfortunately my SCS has to come out as it's not working as it should for me, I've been really uncomfortable the last few months and i most definitely am not getting any better.
Does anyone know if you can have paddles with the Nevro? or is it just leads. I asked my Consultant and he said that you can't have paddles but I still wonder if that's true or not, does anyone here know? He also said that the leads can tend to slip more with this implant.


Love to all,

Sinéad :)xxx:)

Again, I'm so sorry about your latest development, Sophie.:(

And sorry about the cryptic bear hugs...I did that the other night while in a Lyrica haze...it was meant to go into another thread but I can't remember what it was...hehe....was playing with Photobucket's animation features and put the snowflakes in the bear picture...I remember that much. Drugs will make you do things like that.:eek:

Oh, and I also have a question about the Nevro: I went to their web site, clicked the US link, and the first think I noticed was this at the bottom:

CAUTION: Nevro’s Senza™ system is an investigational device limited by Federal (USA) law to investigational use. Not available for sale in the United States

So I'm guessing that's that, then, hunh? We can't have it here, right?

That's not good!
 

Hi Joan
I heard something about this, is this one newer to the Nevroe systems going in now?
Someone that would know about these implants told me that the clinical trials that were supposed to have taken place hasn't been done.
Now Europe and the US have different ways of approving something, a drug or a device can be approved years in advance before the US, whether that's because there are more drugs to approve or just because are been cautious I dunno.

Gosh, it is something to be wary of though. Does anyone know what the success rates are for the Nevro? I'd love to know, now that I have to my Medtronic out!

Well that's my two cents worth!

Sinéad xxx

Any info we can get on the Nevro seems pretty sketchy. When I was getting my implant, I asked my Dr if he heard of Nevro and he didn't.
Your side of the world is breaking the new ground on this system.
I remember trying to do a search awhile back and all I got was a website similar to what Joan mentions.

I wish we had more to go on, Sophie :Dunno:

Don't give up hope tho. Our forum keeps growing and more people are happening upon us while they are searching the net. I'd venture to say that someone will happen along who could shed more light.
Jenna is the only person I know of who has the Nevro

I hope you are feeling a bit better tonight? :hug:

Yup one must remember our Govt
 

ALIAS FDA, has to receive application, proof of lab trials, and give consideration to the whole of the implications of the proposed use of any new medical anything. It is miraculous aspirin has not been removed from the shelves and treated as a controlled substance over here....... But then, they are bureaucracy...... true? I have been reminding folks of our forefathers who brought forth on this continent a new nation conceived in Darwin's concept of EVOLUTION with a letter R added to the beginning. Votes work the same way to effect RESOLUTION of career politics by allowing us to vote everyone out and plug in fresh blood- away with republicans and democrats alike for new blood, new thought, new approaches without cronyism, pork barrel legislation, and such, and oh, by the way deal new cards to a bureaucracy which stands as roadblock to improvements in society....... Oh, no, have I gone and suggested there might be a better way?

Tired of a two party logjam,
Mark56 :mad:

Let there be Nevro

Hi Mark,
You make a good point but bureaucratic nonsense is all over the world. The funny thing is, every year (except this one) for the last 10 years or so we have gone to the US and I usually have a list for Walgreens from family, friends and myself for the over the counter Tylenol PM, Iprofen (sp?) and some of those baby products for my nieces and nephews that you simply can't get in Europe. I'm also aware of friends in Ireland sending folks in the US the likes of Nurofen Plus (paracetamol and 30mg of codeine) which you can buy over the counter here and in the US you need a precription for them. Thankfully though they have clamped down big time on that drugs availability over the counter and believe you me that's a good thing, there are so many people addicted to this drug that it has become a massive problem. It's almost as bad as an addiction to cocaine and there is no treatment for it, it's not recognised in the same way as addiction to opiates! There you go. If we had the FDA standards here it would never have made it to the shelves!

You're sick of a two horse race, democrats and republicans.... they're all the same no matter what way you look at it, there are a few good ones but most of them are not in Politics for the right reasons.

We will fight to live another day!

Sinéad :)xxxx:)

Hi, I am a newbie to this forum. I had spinal cord stimulator put in July 2008. I have been dealing with chronic right shoulder pain for 6 years now. A few months ago I started feeling random zinging, some really intense...to the point that it would effect my right leg and even my ability to talk. It looked like I was having a seizure sometimes. I figured it just needed to be adjusted, it had been about 6 months since I'd adjusted it. Apparently, my lead had short circuited. I had a wire lead. I just had the paddle lead and laminectomy. I was warned it was going to be a lot more painful than the original surgery, but MAN is it painful. I'm freaking out because I am feeling worse pain on the right side of my neck/ back/ shoulder blade and am having a hard time telling the difference between my shoulder pain and surgery pain. Any ideas how long this surgery pain will last? I am dying to get back to my regular self and to stop hurting so bad. Thanks for your help!

Hi Maggie .. and welcoem to the forum.

I'm very interested to hear about your laminectomy/paddle lead, as I am due to have one in October/ish this year.

I didn't find the other surgery painful at all so am wincing a little at the thought that this is going to be worse?

Mark .. where are you? Now this guy will have all the answers.

Here I Am...... puff, puff.....
 

He says having just come in from a nice mountain bike ride on genlty zig zagged hill pathways and paved surfaces..... taking it easy you know. At least it felt good, but since my feet don't cooperate well, I had to adjust the pedals to keep the tread of my shoes on the pedals. Learning... still learning...

Laminectomy...... a surgery to remove the lamina or a portion thereof [rather as wing like structures to either side of your spinal column for the protection of that all fragile and tender spinal cord]. I experienced laminectomy BOTH for the sake of a much earlier fusion surgery and the 2010 implant surgery whereby the paddles were implanted at my T8-T9 position for the sake of enabling pain management regarding my lower body, waist down raging pain. No doubt, Maggie, in your shoulder care situation, a higher implant may have been made, but the pain profile will be similar.

I was sent home the same day as my implant surgery; now, this is major back surgery, mind you, but in the US with high medical expense balanced against miserly insurances cross referenced against highly increased risk of infection manifesting while in patient at most any hospital, I was urgerd, "will you PLEASE go home!" This after I was told, I would be kept overnight.... go figure.

Nevertheless, I determined my bed beckoning from home would be OH SO MUCH more comfortable than a hospital bed [I have experienced those so much, I want to avoid them forever]. The answer "Not so much." I hurt just as badly at home as though I had been in hospital. The first four nights were plain miserable, but at least I had my favorite body pillow over which to through my leg as I sleep better on my side, and the side which received the hip incision for the computer/battery unit was thusly elevated. A good fit..... although it still hurt.

I was sent home with surgeon prescribed surgical pain meds and sleep meds to ADD to my pre-surgery regimen of pain management meds. The effect was to KNOCK me OUT. Kinda hard to recognize the pain if one is drugged to sleep. Mind you, I was already on Morphine straight, Neurontin 3000mg, and Restoril 30 mg. Sleep, sleep, sleep [reminds me of the Wizard of Oz and the poppy scene].

Bottom line on bad surgical pain was about 5 days full on pain, but this did begin to abate at that time, and I began to consume less of the post-surgical pain meds until discontinuance altogether in the early second week post surgical as I continued the pre-surgical pain management meds. My unit went live with the programming session on the two week anniversary of my implant and I soared into heaven at the relief. Next was the complete withdrawal from my pain management meds over the course of the following two months, followed by a deep bout of depression [not unexpected totally given what I had accomplished], but it was handled promptly with counselling and anti-depressant and anti-anxiety meds.

REMEMBER BLAST [no bend, no lift, no Stretch, no twist] following surgery for as long as you can stand it...... your surgeon will prescribe physical therapy to assist in integrating those features of your body movement over time. Also make use of logroll to arise from bed, depending on where the computer unit was implanted. Since I am T8-T9 paddles, wires between, and another incision in right hip for the computer/battery unit, I HURT all down my back. Be kind to yourself, look for a week to notice pain abating, look for a couple of weeks for surgical pain to really become far less noticeable, and then probably only at the incision sites. Keep incisions clean once you are allowed to bathe so as to avoid infection [I had a NASTY infection at the implant site of the wire leads from my Trial surgery..... you know pus, the works right there at the on ramp to the spinal highway to my body- doc jumped on that right away].

You can do this. All will be well. While results are different for everyone, I manage my pain [lumbar and legs] fully with my stim unit and my trusty cushion. I am about to return to employed work. In the meantime I invented a cushion for folks like me and got it patented and now sell it bunches of places, I volunteer providing a caring presence to those around my community who either are ill, enfeebled, or jobless so as to help them find restorative self esteem in regaining meaningful work, and I LOVE to sing praises to my Lord in church [did a rendition of Amazing Grace yesterday]. The spirit is willing, the body is a lot different than it used to be, so my days alpine skiing are finished I am sure, but there are many other things one can do to bring benefit to the world about them [writing a book about my experiences...... that is taking a while].

In prayer and caring for you, Maggie,
Mark56:grouphug: