Spinal Cord Stimulator/Pain Pump Information
 

Hello
I am wondering if there are many here who have interest in these implantable units for chronic pain?
It seems there are more and more folks coming to the board looking for info on these units. For some reason, especially lately, it seems doctors are practically forcing people to get these units.
I am scheduled to get the SCS later this month.
I usually post on the RSD forum, as there are quite a few folks there with the stimulators and/or pain pumps.

We have put in a request to open a new forum or subforum specifically for discussion on this topic.

Are there many here on the Spinal and Back Pain forum who would be interested in having this forum? If so, would you be willing to share your stories and experiences for the benefit of those seeking out this information.

Reason for asking, there are SCS posts scattered throughout a few other forums and it would be very convenient to have a forum that people could go to without having to do a 'search' on all the other forums.

People are very hungry for info on this!
Thank you all

Rae

DocJohn has made a subforum on the medications forum specifically for SCS and Pain Pumps

http://neurotalk.psychcentral.com/forum118.html

Hello Rrea,
My doctor has suggested this for me. I'm trying to find people who have this done. Before I make any decisions about the spinal cord stimulator.
Can you tell me what your physical issues are and why you have decided to get this done?
thank you, staceyc

Hi Stacey
 

Click on the link in the post Chemar provided right above your post and it'll direct you straight to the new SCS forum.
Lots of folks willing to share!
I have sent you a visitor message

Hope to see you on the SCS forum!

Hello, I have had back and leg pain for years and years. I have had the injections and the burning. That work for a few years but with the disc slowly disappearing one by one the shots just weren't working anymore. I had the SCS put in for 5 days. I knew it worked some but I didn't know just how much until they took it out. I had the permanent on put in last Tuesday.
I look into all 3 of them on the market that I could find and I liked the Boston Scientific the best. With luck that's the one my pain doctor likes to use also.
Putting it in is painful. But so were the shots, and the burning. My doctor is very good about not wanting me to feel pain so he did do the best he could about numbing me. He gave me pain pills to help afterwards. The first night was rough just like with any surgery. I have do have discomfort at both sights, but it's only been a week. I turn my unit on while I'm laying down. It's working very good so far. I go back to the doctor tomorrow to check everything out and have it fine tuned some.
After everything I've gone through so far with my back pain this seems to help.
What implant are you having put in?
Good luck.
Mary:)

Hi Mary!
 

Congrats on your successfull implant!! I've had mine for 3wks and like it alot! Yes, you will feel discomfort at the incision sites. I layed on ice the first week. It gets better every day. Just follow the restriction guidelines. I have the Medtronic Ultra (smallest model)

Sounds like you and I have the same pain issues (both legs mostly, but the SCS also has a program to cover my lower back)
I was thrilled about that!

Let me give you the link to the actual SCS forum here at NeuroTalk ..... just click on

http://neurotalk.psychcentral.com/forum118.html

Start a new thread there and lots of folks will chime in!
Hope to see you there!
Rae

PS What we are communicating on right now is just a link talking about the SCS forum, so not many folks will see your post here :winky:

I have a question about nerostimulator
 

Hi I had a back fusion surgery about 9 weeks ago and and was diagnoised with complex regional pain syndrome due to the surgery.The pain runs down my leg and into my foot.I have had 8 nerve block shots and now the Dr is recommending me to get a nerostimulator.Has anyone had a back fusion surgery that led to Complex regional pain syndrome?If so did your Dr recommed the nerostimulator?My back surgon thinks I should wait it out before getting the stimulator and my pain mang Dr thinks I should have it done now.I dont want to jump the gun and just get it done but I also dont want to live with this pain.
Im currently taking Lyrca and Cybalta ,plus pain meds which include morphine patches.I have had a MRI and a cat scan that came up negative for any other problem than the complex reg pain.If anyone can answer these questions I would appreciate it.
Thanks,Val

Hello Val!
 

Hey, you have great questions! I hope you will get some good input....
I think you already know this, but in case you don't, here is the actual
link to get you over to the SCS forum,,,, click on:

http://neurotalk.psychcentral.com/fo...ysprune=&f=118

More folks will see your questions there!
Where we are now communicating is just a post informing people how to get TO the SCS forum!

Good Luck my friend!
My heart is with ya!
:hug:
Rae

Ans
 

I'm thinking about having ANS implant. Anyone here with this implant?

Great Idea! We all need to stick together and share experiences!!
 

New to site and already have had some questions answered. I also dont feel so alone when I read about others in similar situations. Thanks for sharing! Pam Z.

failed back surgery syndrome
 

My father had a spinal fusion about a year ago. Now, he suffers from severe peripheral neuropathy in his feet, pain in his legs, and pain at the surgery site. I am searching for ways to help him, but it's hard because he has almost given up. He feels he has tried everything, although I point out all kinds of things he hasn't tried. Anyway, I got him to start taking Brewer's Yeast today. Has anyone had any experience with this or b12. I wish b12 was in the BY, but that's the way it goes. What should I do to help him?

Anthony--
 

--you posted this in the useful websites portion of the spinal forum--specifically, in the area that deals with spinal stimulators--so only people looking for that very particular information are likely to see it.

I'd re-post your query in the spinal forum proper, or in the peripheral neuropathy forum, and then you are likely to get more responses:

http://neurotalk.psychcentral.com/forum22.html

http://neurotalk.psychcentral.com/fo...sprune=-1&f=20

I looked into this also. I have Neuropathy due to failed back surgery now with the extra bonus of severe osteoporosis in the lumber spine. At 47 it seems very overwhelming.

I've checked with a couple of people that i know that have implants, and it doesn't look like that's the answer. If you have any other info to share please do. Most people can't begin to imagine how difficult it is or how painful it can be. Best of luck to you.

don't count it out
 

I felt the same way about SCS, but after the trial I found that it would work for me, 65/45 was my guess A trial is a trial, If you are like me I will try anything:) once, I understand the pain, I think everyone at this site does !!!

I dont hear much about the implants, would also like to know more about them, getting my first lumbar fusion soon

I am interested in the spinal cord stimulator.My doctor
has suggested this option for me.I would like to hear
from people who have them
Thanks
MZ33

Hi MZ33 and welcome to NeuroTalk! :)

You've posted your question on a "sticky" thread ('Sticky' threads are created by moderators or administrators, and remain 'stuck' to the top of the listing, even if they haven't had any posts recently. Their purpose is to keep important information visible and accessible at all times) and these threads often don't get the traffic that other forum threads get so I copied your post into it's own thread on the Spinal Disorders forum. Here is a link......http://neurotalk.psychcentral.com/thread143383.html

Hi Rae,
I'm new to this forum but found it in my quandry to try SCS. The Ins. Co. actually requests a Psyc eval in order to proceed? So after a few sessions, I came to a roadblock but not from my Psy eval. Can I get an MRI with this stimulator in place?
I Don't think so! I've worked in radiology for 30+ years. I've had everything from radio-ablation to a laminotomy in 2004. I've found norco to be my friend in keeping my legs and lo back pain at bay and under control.
I do think that some of these Pain Doc secialists get a tad negative of not gettin their patients off the pain meds, But my Neury Doc thought that I was on a manageable amount...about 60 - 75 mg a day, prior to my surgery in 04 I was on 100 norco and 100 methadone a day:( But I could function and have a quality of life.

Oh by the way... Great idea to have a specific forum for SCS. Good luck, I'll be back:)
MK

try again
 

So sorry to hear your dad is suffering. I want you to keep going and get another opinion. I had failed neck surgery, fusion with plate at C-6-7. The next six years were a living hell. My pain specialist finally said, lets try to see the best neuro surgeon. I wound up with a big surgery, as I had also reversed the curve of my spine. C-4-5 was kinda folded over on itself. My first neuro said he couldn't help me anymore and I had given up hope. The Dr. I saw those six years didn't think there was hope eithor. I had the surgery Aug. 29. This is a great success. My pain is very little conpared to what it was. I was fused C3-7 and my neck was given back its shape. I believe in hope, that medicine can do alot. Even with failed surgery, there can be hope in a future surgery. I didn't think there could either. I was wrong, and I have a life without the terrible pain. Surgery was hard, no joke, really hurt, but here I am in a new year, and I am off almost all my meds. Maybe it would be good for his spirit if you tried just one more time. ginnie:hug::hug:

anthony
 

I posted you without putting your name on it. See below for a reply aimed at your dad. Ginnie

Feel free to contact me on this topic
 

I have both peripheal and scs implant. Please feel free to contact me with questions.

A tortured trail of successful SCS outcome...
 

I may be the only(?) that has had both the Medtronic and Boston Scientific SCS systems implanted.
I have been suffering a pinched L5 nerve for several years. The Doctor's and I have a good idea of where it is most likely pinched, there is no conclusive evidence via an MRI. Over the years before I had SCS implanted I tried just about all the different procedures from injections to nerve ablation with no result.
In February 2009 I had the Medtronics Ultra Restore implanted after a very successful trial. The therapy delivered probably saved my life - we all know the battles with chronic pain....
Everything was going quite well until March of 2010. One of the leads got bunched up and required revision surgery. Starting in November of 2010 I started having a deep pain that -to me - felt like it was coming from my spine. As the month progressed it became a bit worse and knew it was time to see a new Surgeon (I had lost faith in the first one) . About a week before my appointment I had several attachs of a deep indescribably pain that just froze me in place and speechless for les than a minute. Ended up at the ER. The x-ray showed one of the two leads had dropped three inches and the excess wire was pushing up against my spine and probably pushing on the Central Rami that runs down the back of the spine. At the ER they were able to move the wire just pushing gently on my back so the lead was no longer on top of that area.
Several days later I had the entire system explanted. Then I had to wait 30 days for the surgery to heal completely. My new Surgeon implanted the Boston Scientific system via a small laminoctomy on February 3, 2011.
My initial feeling is they both provide - for me - very good relief. I find a large part of the success is the how the "buzzing" acts as a distraction from the pain has much as decreasing the pains overall intensity.
It's only three weeks with the new but already know the pluses and minuses of each companies system. I will be posting more about my experience with the Boston Scientific and explain what I see as the differences in the products.
If anyone has questions I will do my best to answer - but please be patient..

scs patient
 

I have had my scs since febuary 2009 and the first year was great. This second year I have more pain and have had to turn it up higher and higher. I went to the doctor who said all he could do would be to implant a second stimulator. I'm still tring to work but fined it getting harder each day. I was told I do not qualify for disability. Do you have any suggestions ?

Constantly in pain


Donnap9:(:(

Hi Donna
 

I saw your post and it caught my eye, as I am dealing with some VERY similar issues to what you describe!

I see you've been a member since 2009, so you probably already know this, but just in case, I wanted to make sure you knew there is a forum here for SS Disability.....here's the link..
http://neurotalk.psychcentral.com/fo...aysprune=&f=28

There are some very knowledged folks there who can really help you in this area.....
Also, there's a forum here specific to SCS's.....in the main menu, it's listed as a subforum in the "Medications & Treatments" section....
http://neurotalk.psychcentral.com/fo...ysprune=&f=118

Feel free to come on over there and you will probably get some good feedback regarding the SCS....

Caring!
Rae
:hug:

I think a Spinal and back pain forum is a great idea I would love to talk about my fusion and share my knowledge, but most of all learn from others. It would allow this site to be less scattered.

I am new to the site and forum. I have suffered w/chronic back and leg pain for years. I am scheduled for some injections next week and the Dr is also suggesting a SCS. I know nothing about either. Any feedback would be greatly appreciated. I also spent countless hours trying to find a site with a forum on thisw topic.

How do you get to the SCS Forum?

SCS Forum
 

Yes I would like to see more on SCS as my Dr. is suggesting this may be an option for me to consider

Welcome to NeuroTalk:

Here is our SCS forum which discusses SCS and other implantable devices for back pain:

http://neurotalk.psychcentral.com/forum118.html

Have SCS since 2003
 

I've had my scs since 2003. I've had 8 back surgery's and 2 two scs surgerys. If it wasn't for the scs, I wouldn't be able to walk, work or exercise. Unfortunately I now have the Thoracic problems with disc, which this unit does not help. Mine controls both legs, and lower back. The arachnoiditis I suffer from is almost painless, unless I totally over due it, due to the scs. If I don't have it on, withing 1 hour I"m in a level 10 pain. So yes, this unit is wonderful.

Interested in learning more
 

Hi Rrae,
I would be very interested in learning more about this. I am going in this Wed to the hospital for another EMG and MRI w/ contrast of spine and brain to determine why my nerve pain still exists after a double level fusion...I hope it does not come down to me needing an implant device...uggh!
Thanks!

My husband had a SCS implanted 12 weeks ago. So far not so good. We have a follow up appointment this upcoming Monday with a spinal pain institute that we met with before he had his implant. We were told the implant would help with a minimum of 40% of his pain. To date my husband can't even turn it on because now he has an extreme amount of pain at the top of his back where he has never had pain before but where the top incision was done to feed the leads for the implant down. My husband had the trial done before the permanent implant and the trial worked well which is why he went ahead with the permanent implant. If you have more specific questions give me a message.

Mary,

I am interested to know how your spinal cord stimulator is working. My husband had one implanted 12 weeks ago and so far he hasn't be able to use it. He is having an extreme amount of pain at the top of his back where they did the top incision for the leads. Any information would be very helpful.

Dani

Has anyone recommended changing to a different brand of SCS? That suggestion was just made to me. If you don't mind me asking, are you suffering from CRPS or another condition?

Hi, I have had my implant for about 2 yrs now,but latley I've been having alot pain and swelling around my battery pack. Has this happened to anyone else?

Hello!
 

Welcome to NT!
We now have a forum specific to SCS/Pain Pump discussion! Here is the link to get you there
http://neurotalk.psychcentral.com/fo...ysprune=&f=118
It's a very active forum and lots of info!

We were actually just discussing the issue of changing manufacturers.
I hope to see you there!

:hug: Rae :hug:

My Dr is sceduling me with a Pain Mainagement specialist and since we have tried everything else I am thinking this could be our next option. Not really sure how I feel about it yet. Kind of scary!

hi everybody

can anyone have a pain pump
inserted in a noninvasive manner
info appreciated

thank you

Hi Eva
 

I am not sure Eva. I do know there are several kinds. The SCS which is written about alot on the forum, and then there is the morphine pump. A friend of mine has this, and it never gave her problems, just relief. It was inserted into her stomach, and the refill is injected monthly into a spot through her skin. It doesn't hurt her. I am not sure there in a non invasive kind of pump. I will get on line and see what I can find out. If I had a choice, I would have this morphine pump. I was turned down for the SCS for what ever reasons they had. At the time I had no insurance, which was part of the problem. In fact finding any specialist was difficult.
I will try to find out more for you Eva. ginnie

On my second battery, may need another
 

Hi,

I had a pain stimulator implant in 2008 and it worked great for the targeted area for a while. I recently had everything taken out so MRI's could be done and then they put a new IPG with paddles in the epidural space. Because the new paddles didn't work for my migraines and neck pain, they did help my shoulder and limbs, I had a modification to treat two more areas. With the new areas the battery isn't working as expected so the relief is minimal. Now they are playing with programming and if that doesn't work I may need either a second small battery or a replacement to a bigger battery like the one I had in the first place. While looking for answers I see the company that makes my stimulator is having big problems. I trusted them because they did a good job the first time and the rep. is awesome but I should have done my research, they were bought out a few years ago and seem to have continuous problems (search FDA recalls before you pick).