SCS & Pain Pumps For spinal cord stimulator (SCS) and pain pump discussions.

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Old 06-28-2010, 03:39 PM #1
msdilbert2 msdilbert2 is offline
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Default new to group, trying to get more info from fionob on her double scs or anyone with 2

Hello everyone, I have had many lower back surgeries and last year had a c4-c7 fusion, degenerative disc disease has no bounderies. Have been on fentanyl patch which works great for the pain, but basically puts a stop to my gi tract. I stopped the patch in mid May to get the bowels back in working order, but now in pain from neck to lower back with right leg radiculopathy from scar tissue. Just saw new pain md who told me about the cervical scs, but i left wondering how I can get some pain relief from neck and back issues, and then I found this site and fionabs emails. Would love more info from anyone who has had 2 and your stories- good or bad. thanks to all!
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Old 06-28-2010, 05:23 PM #2
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Default Welcome :D

First, I want to say welcome to the community. Everyone has been very helpful and feel free to ask anything !! I have both a lumbar and a cervical spinal cord stimulator (Lumbar implanted 6-10-09, Cervical implanted 7-30-09). I know these dates really well because they are like second birthdays to me.

In Sept. 2007, I was in an auto accident that caused severe nerve damage (from the nerves being stretched), a diagnosis of brachial plexopathy -aka thoracic outlet syndrome - and lumbar RSD followed. I already suffered years with degenerative disc disease and radiculopathy down my left leg. As if that wasn't bad enough, another car accident (and neither my fault LOL) in Nov. 2008 left me with both cervical and spinal stenosis ( along with left shoulder tendinopathy and chronic bursitis). Needless to say, pain prevented me from living daily life - was fired from my job of 13 years and I had 2 toddlers to care for. I hated pain meds, but didn't have much choice. Life was hard.

Fast forward to my SCS implants, and like I stated, it has been like a rebirth for me. Am I feeling 100% better?? No. Do I still have to respect my limits?? Yes, BUT my limits are much greater than they previously were. My SCS feels like they are 'massaging' my angry nerves. I LOVE THEM. I call them comfort food for my pain. I am a new person in the sense that much of my depression has lifted. I used to take Cymbalta, now I'm off it. I took painkillers daily for 2 years, now it is very rare I take one (maybe 4-6 a month). Some people haven't had the same experience as I, but I can't express how GRATEFUL I am for all the help they've provided me (that and I had an awesome PM doc who threaded those leads so well it hits all my pain areas).

Again, welcome to the board ...... should you have any more inqueries, we're here for you

Vanna
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msdilbert2 (07-05-2010), Rrae (06-28-2010)
Old 06-28-2010, 08:56 PM #3
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Laugh Welcome Pam!!

So glad you found your way to the SCS forum!!
We also have some here with the Pain Pumps as well.
A wonderful, fun, caring bunch of peeps here!

It'll be great getting to know you. We are like 'family' here
You will be very inspired, I can guarantee....and no doubt we will learn and be inspired by YOU as well!

Pain is NO fun at all, but we find ways to keep smilin and building from one another's strengths here!

Keep us updated on your thread!

Caring
Rae
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Old 06-29-2010, 04:00 PM #4
msdilbert2 msdilbert2 is offline
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Unhappy thanks for the feedback

Quote:
Originally Posted by Rrae View Post
So glad you found your way to the SCS forum!!
We also have some here with the Pain Pumps as well.
A wonderful, fun, caring bunch of peeps here!

It'll be great getting to know you. We are like 'family' here
You will be very inspired, I can guarantee....and no doubt we will learn and be inspired by YOU as well!

Pain is NO fun at all, but we find ways to keep smilin and building from one another's strengths here!

Keep us updated on your thread!

Caring
Rae
let me try this again, keep hitting enter! Thanks for the feedback from Vanna and Rea, I really need to know I'm not alone with all this pain, without fentanyl I can do very little now, read alot! I will talk to my md in a few weeks and tell him what I've found out from you great people. ntHe wants to start with multi level facet joint blocks at neck. Have had injections and laminectomy last year for lower back without much help, so I will discuss the scs further. Hope to talk to everyone soon, thanks again, Pam
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Old 06-29-2010, 07:57 PM #5
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Default sorry late getting back to you

Have been in a "fog" from the dilaudid and fentantyl combo. so not up to much other than what I need to do around the house. I finally got the ins. ok for both the cervical and lumbar SCS, so waiting to hear when my surgery date will be. Have been thinking about Mark...if I remember right, today's his surgery day???

As far as pain control, I went through both a lumbar trial and a cervical trial, both about a month apart. I got relief from both, the cervical moreso than the lumbar, but was told that this is typically the case...cervicals tend to be easier to get broader pain relief. Also, during my lumbar trial, they hit scar tissue, so didn't get as much pain relief in right leg as I'd liked, but the pain relief I got in my hips, lower back and left leg was enough for me to say yes to the permanent even if I never got the pain relief for the right leg.

So, now I'm in the waiting mode, back on mind-numbing pain meds., waiting to hear when my surgery date will be.

If I've failed to answer any of your questions, please respond back...as I said, in a "brain fog" lately
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Old 06-29-2010, 08:08 PM #6
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Default oops, said wrong med.

See what I mean, just not with it lately...said fentanyl when I really meant to say phenergren...dilaudid and fentanyl, now that combo. would put someone way beyond "brain fog" I'd think
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Old 06-29-2010, 10:46 PM #7
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Default Pain Pump, better than meds

I am new to this sight, but I had my pump implanted on December 23, 2008. This day is well remembered as I can remember the phone call from insurance company. They told me 2 days before Christmas or wait till spring. No question about it, it was one of the best presents I could get. Well, I can say it helps diferently on different days. I went from $6,200.00+/- a few dollars a month in medications to down to only about $400 a month. I had been on so many different meds and so many different combinations, I believe that the withdrawls from changeing so often were the worst. What I am getting at is everyones experience is different, and ultimately your expectations of relief are the only thing to count on. My issue is that I trust in people until given a reason not too, but now I am "investigative" in all parts of my life. Especialy my mental and physical health. The pump ,to me, feels like a deep massage some days and settings, and other days it is just anoying. I am hoping that I will find some relief in the future, but now just trying to get through 1 day at a time. I still take 30mg Cymbalta, 30mg 3x Flexoril, 20mg 3x Methadone, & Advair 250/50 2x (asthma) daily, and percocet 1-5x @ 10/325 each as breakthrough and 30 -60mg of Restoril for sleep every 2 to 3 nights. It seems like a lot, but nothing compared to before the pump. Good luck and always check, check, triple check and have someone you trust check the doctors out............. I was "lost" in the system before I realized they "insurance" doesn't care as long as you do not ask the right questions.
God Bless, and know what you are gonna ask before going to see anyone.
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Old 07-04-2010, 02:07 PM #8
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Default New member in Florida

Hello, I am new to this forum and need information. I have had 3 spine surgeries: two cervical fusions and a five level lumbar fusion, but I continue to have neck, low back and hip pain that prevents me from working. I want to have a spine stimulator implanted for my low back, and possibly my neck at some point in the future, but I really want to go to someone who is very experienced with this. I live in Northwest Florida and I am willing to travel to a doctor that is within a day's drive, if necessary. Also, I would like to know of doctors who can and will do 2 SCS's. The pain mgmt doc I have been seeing doesn't do cervical SCS. Thanks!

Terrieg
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Old 07-04-2010, 02:48 PM #9
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Default

Hi Terri,
I am going to p.m. you some info and a link
I have mine for T.N.(face pain) but the doc that did mine is one of the best in my area for SCS...I am in Daytona Beach Fl.
so let me message you with the info okay.
it is nice to meet you
I know your are going to find this place filled with understanding caring folks and find the info you need.
PEACE
BMW...Tina and T-Rex (my stim)
opss I cant message you yet but I am going to try the email option you have up..if not I will be back to post my email and we can connect that way okay?? !!
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Old 07-04-2010, 03:05 PM #10
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Default

okay it sent off to you... let me know if ya get it ..just tag a thank you and I will know ya got my message okay t.y.
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