Do you have a SCS or Pain pump?

Hannabananna · 09-29-2012, 04:54 PM

hello everyone...delighted to find so many opinions on this subject. I had my scs implanted in March of 2012,,,yes it works for me although the pain from the surgery side effects is worse that the pain that I had it implanted to releive. I am on twice the pain meds. I had to return to work 10 days post op and work for another 5 months until I was able to leave that job...I think I may have torn stiches..the pain was unbearable between my shoulder blades. I have not worked now in 4 weeks so I am getting stronger with less pain. I would so like to talk to others who have had the unit taken out...I do feel like mybody is rejecting it....
As with others I have seen on this site...my doctors have truly been little help and I am seeking a new one.
I would NOT reccommend a scs based on my experience.
Great to be here
Johanna

Rrae · 09-30-2012, 03:52 PM

Welcome!

So glad you found us! I'm so sorry that your experience has been rocky and frustrating. It really irks me when I hear of these Drs who don't follow through with their patients after the implant has been done.

Many folks have had revisions and extractions, so please come on down to the active posting section below and start a thread. You will get great feedback from lots of caring folks.

It'll be great getting to know you!
If you have any questions on finding your way around or how to start a seperate thread, just holler ok!

Caring,
Rae

boggsr · 10-26-2012, 08:56 PM

new here I have had 2 back sugerys, now in july of2010 I had a SCS put in, It worked good 4 a while ,I had to retire in jan 2011 because my job required me to do heavy lifting & work as a deisel mechanic, now the SCS is not doing so hott, am taking norco ,cymbalta, zanaflex neoutonrin. all 3 time a day & the pain just keeps getting worse ,went to PM last thursday he gave me lidomern patches I can,t tell yet if they help of not, Dr. says my arthartis will just keep getting worse the older I get. My L5 disk is gone bone to bone all my lower back is bad Degertive disk deasese. has anyone else had the SCS not doing as good as it did? just wondering if your body will get used to it.

Rrae · 10-27-2012, 10:45 PM

Welcome to the forum!
Thank you for sharing your experience! Although I'm sorry to hear that you aren't getting as much pain management as you were 2 years ago.
Boy, I can SURE relate to those 'other' pains that come upon us uninvited as we get older! It sucks!

I've had my unit for a couple of years also. To be honest, I'm not sure if it's not doing as well as it did at first, or if my other conditions are starting to take the front seat. For the relief I get in my lower back and legs (Neuropathy, RSD), I sure wouldn't want to be without it, but it's kinda difficult to enjoy like I did at first with these blasted back spasms hammering at my sanity. I too still take quite a few meds, but at least I don't feel the horrible burning pain like I did pre-scs.

It's great to have you with us!
May I invite you to come join the active posting down below? Right now we are in the upper section of the SCS forum, where it's mostly introductions and information.
You'll be amazed at how many folks just like us live with these buzzing little units! Lots of great support!

Rae

tsi25 · 11-04-2012, 02:15 PM

I also have a SCS implanted and had to have it redone as it was to high in my mid region instead of below my knee. It has been in for about a year and a half. It really only helps take the edge off and that is it. My RSD in my left foot, ankle and calf has now spread all the way up my leg. They have talked to me about doing a prialt pain pump. I am trying to see what it is going to look like(as I am a visual person). Since you have had yours in a while are you starting to see any long term side effects??? Any information would be greatly appreciate.

Quote:

Originally Posted by lostmary

Hi all,
Hope this finds everyone doing well today. We just got out power back on. Been without heat, water, tv, internet for several days now. Good to be back with everyone

I'll start with my story for those that don't know me. I'm Mary and I've had rsd for about 4-5 years. I got my first scs over 2 years ago. I had the trial and after 3 days the surgical pain went down enough that I could get out of bed. I put shoes and socks on and went out. I had a cane to help me which was better then my walker. A month later I had the perm unit implanted. The recovery was really bad, and it took almost 4 wks before I wanted to get out of bed. I never really got the relief from the perm unit as I did the trial. I kept having the scs (stim) reset and I never had any luck with it. About a year later I noticed that the battery, which was placed in my butt, had started to turn around and it was hurting when I wanted to sit, etc. well the next dr. did an xray to see what he had to do, and he discovered the leads had pulled out and were somewhere else. So he replaced the complete unit moving the battery to the side. I knew something wasn't right, but as the dr. passes you over to the company rep after surgery, I didn't know for sure what was going on. I woke up one sunday nite, went to try to move, and discovered that I was soaked in pus which was pouring out of my side where the battery was. Long story short, ended up in ER, then surgery, then a nursing home. It was the worse experience in my life. Never again. In surgery, they had to remove the scs as the infection had gone up the leads to my spine. I don't think this would have happened if the dr. would continue to see you after surgery instead of passing you off to the comp. rep. who talkes over the scs side of things.

I swore I would never have another surgery and it took me over a year to decide that I really wanted to have my life back. I was on enough pain meds to knock out a horse, (of which I have 3 lol). I wanted my life back so bad that I started looking for things that I could do. I had been studing the pain pump for quite a while, doing research and talking to many pple who had one. Finally I decided to go for the trial.

It was the best thing I have ever done in my life.

The trial was 5 days in the hospital with an internal cath into the spinal fluid and an external pump. I woke up from surgery sleeping on my back. No pain from the surgical site. THey started me on Morphine, but it turned out I was allergic to it. THey were giving me zofran to stop me from throwing up, but guess what..I'm allergic to that also. (this is why the trial is done in the hosptial. they have to know that you are ok with the meds.). THey switched me to diluidad, which is more powerful the morphine, but less side effects and my life changed in that one day. the pain was almost gone. I could touch my feet and legs and walk without pain. even my butt was doing great. I didn't want the trial to end, but all good things must. It was 2 months before I could get in for the perm. THey kept me in the hospital for an overnighter to make sure I wouldn't get sick again. No problem. back a little sore from surgery, but I was up and walking without much pain. By day 3 I felt so good that I started ordering some scrubs as I'm going to go back to work as soon as I get the ok from the dr. The one thing I have found out about the pump is that you may have to search for a distance to find a dr that will do the pump. Why??? I don't know for sure but I have my theories. With the pump, you will be working with your surgeon/dr for the rest of your life. It is a commitment on your part and your drs. part. It's not put the unit in and leave, its monitor the pump, try different things in the pump so that you can get off the oral meds. I have horses and I want to ride again. WIth the scs I couldn't ride again, have to worry about the leads pulling out. ( of course they did anyway). with the pump, there are a few things I can't do. Bunge jumping. (darn it lol) and jumping out of planes. besides that I can do almost anything I want.

I know this is long, but I did want to explain how the pump works. You have a resivoiur that is implanted under your skin. Mine is to the right of the spine. to that is connected a cathater which goes into the spinal fluid in your spine. The dose of meds that you recieve is 1/300th of an oral dose. As this doesn't go thru the rest of your organs, it doesn't affect you like oral meds. I don't think thru a fog anymore. I can laugh at jokes because I really understand them again. Life is clear and brighter now. You can tell that I'm happy with it. I just wish I knew about it before and had done the extra that it took to find a dr. that would do it. None here would. They all hated it and said no no no. I found one in another state 3 hrs away, and it was well worth it to have my life back.

Any questions...I'll answer them Have a good evening
Hugs
Mary

SnowWhyte · 11-04-2012, 06:03 PM

Quote:

Originally Posted by DFW_Andy

So in my voting I selected both "Worked well" and "Worked somewhat" which obviously contradict - so I added, "I'll tell ya about it in a post"!

Basically, my wiz-bang, high-tech Medtronic ActiveStim system is only 19 days in and at first it was ROCKING with wonderful performance and pain relief - then it started "stuttering" (well, it was doing it from the beginning but it has gotten MUCH worse) where it would sometimes push full power then it would just mysteriously drop, then back up, then down, up-down-up....etc. I'm not moving, not changing my breathing, nothing....it just stutters. Now at almost 3 weeks I see my Rep tomorrow morning and I'm not letting him off the hook this time...he's either going to call the pulse-generator defective and start whatever process he needs to get this fully analysed (or whatever) or he's going to have a GOOD explanation as to why this is happening. With it getting worse I really suspect the PGen is really bad and I'm looking at another surgery. I'll do it in a heartbeat because of the relief I got but...I'm not very amused.

Hi there!

I'm so sorry to hear about the trouble you're experiencing with your scs! I'm wondering though, what your outcome was after meeting with your rep. The reason I ask is that I am getting scheduled for my trial stim any day now, and then (if successful, obviously), I too will be getting a Medtronic unit- the same as yours, I believe. However, your experience has me concerned that maybe Medtronic hasn't perfected their newest unit yet (the activeStim).... Also, I'm wondering (and will probably post a new thread/survey on the topic) where your battery "pocket" is located and if that placement is working well for you. I have read about issues w/the most common placement (high buttocks region) causing pain, but have read the same with some people with abdominal placement. So I'm trying hard to decide where I'm likely to have the best success w/the 'pocket' should I have the perm SCS implanted.

Thank you for your help, and best of luck to you!

Colleen

p.s. Sorry if I've rambled... it's a bad habit

Rrae · 11-04-2012, 07:08 PM

Quote:

Originally Posted by tsi25

I also have a SCS implanted and had to have it redone as it was to high in my mid region instead of below my knee. It has been in for about a year and a half. It really only helps take the edge off and that is it. My RSD in my left foot, ankle and calf has now spread all the way up my leg. They have talked to me about doing a prialt pain pump. I am trying to see what it is going to look like(as I am a visual person). Since you have had yours in a while are you starting to see any long term side effects??? Any information would be greatly appreciate.

Welcome!

I'm sorry to hear that your unit isn't workin up to it's potential. This has happened with a few of the other members (regarding too much stim in mid region). With some tweaking and/or revisions, some of them have been able to get rid of that unwanted stimulation in abdomen/stomach.

Lostmary hasn't posted in quite awhile, so I'm not sure if she will see this post.
Here are some posts from other pumpsters

Here is the testimony of Bobinjeffmo's pain pump:
http://neurotalk.psychcentral.com/post701979-14.html

Here are some post references, both good and bad, to hopefully give you a realistic array of experiences:

http://neurotalk.psychcentral.com/thread144925.html

http://neurotalk.psychcentral.com/sh...945#post841945

http://neurotalk.psychcentral.com/post778075-7.html

Another thing you can do is use the "Search" feature near the top of the page in the bar that runs across the screen (3rd option from right). Type in 'pain pump' and it will bring up prior posts and discussions on these.

Hope this helps!
Also, I'd like to invite you to come on down to the active posting from the whole crew. Right now, we are up in the 'Sticky' section, which is mostly information and polls. Once you exit out of this dialogue, you'll see an option down below to start a new thread of your own and you'll get tons of great feedback from many caring members.

It's great to have you! Hope you stick around.
Just holler if you have any questions ok!

Rae

Rrae · 11-04-2012, 07:16 PM

Quote:

Originally Posted by SnowWhyte

Hi there!

I'm so sorry to hear about the trouble you're experiencing with your scs! I'm wondering though, what your outcome was after meeting with your rep. The reason I ask is that I am getting scheduled for my trial stim any day now, and then (if successful, obviously), I too will be getting a Medtronic unit- the same as yours, I believe. However, your experience has me concerned that maybe Medtronic hasn't perfected their newest unit yet (the activeStim).... Also, I'm wondering (and will probably post a new thread/survey on the topic) where your battery "pocket" is located and if that placement is working well for you. I have read about issues w/the most common placement (high buttocks region) causing pain, but have read the same with some people with abdominal placement. So I'm trying hard to decide where I'm likely to have the best success w/the 'pocket' should I have the perm SCS implanted.

Thank you for your help, and best of luck to you!

Colleen

p.s. Sorry if I've rambled... it's a bad habit

Colleen,
I see you've found your way down below where all the active posting is and you've started a thread there. Good! You're sure to get great feedback, as we are a very caring and friendly group.
Please keep us updated on your thread as you go through with your trial!

It's great to have you!

Rae

DFW_Andy · 11-05-2012, 04:51 PM

Quote:

Originally Posted by SnowWhyte

Hi there!

I'm so sorry to hear about the trouble you're experiencing with your scs! I'm wondering though, what your outcome was after meeting with your rep. The reason I ask is that I am getting scheduled for my trial stim any day now, and then (if successful, obviously), I too will be getting a Medtronic unit- the same as yours, I believe. However, your experience has me concerned that maybe Medtronic hasn't perfected their newest unit yet (the activeStim).... Also, I'm wondering (and will probably post a new thread/survey on the topic) where your battery "pocket" is located and if that placement is working well for you. I have read about issues w/the most common placement (high buttocks region) causing pain, but have read the same with some people with abdominal placement. So I'm trying hard to decide where I'm likely to have the best success w/the 'pocket' should I have the perm SCS implanted.

Thank you for your help, and best of luck to you!

Colleen

p.s. Sorry if I've rambled... it's a bad habit

A big, Texas, "HOWDY" to ya, Colleen!
You didn't ramble one bit, I can assure you - if you were to read through my various entries out on this wonderful forum you'd see real quick I'm a really BIG RAMBLER!

Lessee if I can answer your questions.
The problem with my wiz-bang stimulator is - they decided to put defective parts into my body. Yep! You heard right. Insurance initially got hit with $80,000 for hardware alone (they "negotiated" it down to a measly $59,000) but in the end the rep finally found that BOTH Probes (my doc likes probes, not paddles) had one defective lead on each. The probes have 8 total leads on each one so out of a total of 16 leads in my body (she put in 2 probes) TWO are defective. How has it affected my outcome? Very negligible due to the Rep being able to 'program around' the 2 defective leads.

In the end, Colleen, I am VERY happy with this technology. I can't tell you how NICE it is to set-it-and-forget-it (almost, I still have to make adjustments here and there depending on my pain level) but I spend HOURS each day AND all night w/o having to mess with the settings....all because of AdaptiveStim. I lay down and INSTANTLY it turns down...stand up and 20-seconds later it jumps up to my standing comfortable setting. Same with the rest of the settings (mobile, upright, laying on back, left side and right side). It's just, plain C O O L ! !

Having said that, if you go with this, I recommend you go ahead and ask the Rep to program a secondary channel (the B channel) with identical settings that are NOT adaptive. There are times when the Adaptive kicks in and THINKS I'm laying down when I"m actually in my recliner relaxing - I don't want it going to the Laying Back setting. This has worked out WONDERFULLY.

Battery placement is ZERO issue. I was shocked at how little this thing bothered me, right out of implant surgery. I expected to be writhing in pain...I am not, nor have I been. She placed this pack in te PERFECT location where I do NOT hit it. Sure, before it healed, if I leaned up against it, or layed directly on it, it'd let me know with a JAB of pain but it was N O T H I N G compared to what I expected. I took one week and 1.5 days off work and was right back in the saddle - I expected to have to take at last 2 weeks off then come back barely able to do much - no way. The battery pack/PGen (Pulse Generator - my abbreviation!) is much smaller than older models....another "plus" about this newer technology.

Anyway, high buttocks, off-centered more towards your side than your back, is perfect placement for me.

I hope this answers your questions. I actually started a thread on the AdaptiveStim - feel free to check it out.
http://neurotalk.psychcentral.com/thread175404.html

God bless!

mags1939 · 11-06-2012, 12:35 PM

After two back surgeries, one with spinal fusion L4 & L5, then stenosis is L3, I continued having back pain to the extent that I could only walk about one block. If I did any activity, such as cleaning my house, I would by bent over double with back pain. Had an MRI, after which neurosurgeon told me additional surgery would be of no use and he suggested I do the trial SCS implant. Trial gave me around 95% pain relief, so went ahead with the permanent implant. Have met with the Boston Scientific tech a couple of times to tweak the settings; but we still don't have them quite right. Will need to work more on the settings to get it to my liking; BUT the pain relief is amazing. Last weekend, I went to an RV Rally at Daytona Speedway and walked around the exhibits - with NO PAIN. I did turn over wrong one night and had a sharp stinging pain around the IPG (battery pack implanted in my hip), but feel that was probably skin or hip tissue stuck to the surgery sight and breaking lose. Stimulation is still working fine. I will see the tech within the next week to have it checked and also do some more tweaking of my four settings. No regrets of having the implant as I can now

climb a flight of stairs one foot at a time - where before it was a struggle to make it going both feet per step.

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