Spinal Cord Stimulator.
 

I would like some input on a decision I have to make. I have used the 25 microgram Fentaly patch for pain for 8 years. It literally hs saved my life, as my pain was so intense before that I was contemplating suicide. A year or so ago I added Lyrica which has also helped a lot. I am now able to be out of bed for about 5 hours a day. If I boost my meds by adding Darvon to my regimen, I can extend that another 3 or 4 hours, but I have to take a big dose. I can't increase the fentanyl as I have side effects of tiredness and daytime sleepiness. It also make me a little depressed.

My family doctor sent me to a new pain doc to see if he had any ideas for getting better pain control with less side effects and not take so much Darvon. He tried me on methadone as an alternative to fentanyl, but it made me even sleepier. So now he is recommending that I consider a spinal cord stimulater. I am very apprehensive. I would love to get off drugs that make me sleepy and tired, but.... Surgery of any kind carries some risks, and it sounds like you have a lot of precautions with the stimulator, like not bending or twisting and it might be a big hassle. And,,,,,I haven't found any good research studies on how effective it might be for neuropathy -- like what percentage of neuropathy suferrers get significant relief. And... i am afraid that they will make me go off all my pain meds at some point in the process. I am not a drug seeker, but I am very afraid of suffering terrible pain without medication, even for a short time. I don't think any doctor believes how severe my pain is. It is hard for me to believe it, since I look normal.

Here is my question for you guys: What should I do? Ha. See, it's an easy question! Should I be satisfied with the current medication status (for which I am very grateful), or should I try the stimulator? Help!

Hi Dakota:

Did you know you can give this spinal cord stimulator thing a trial run??

Click on this. It expains everything.

http://www.spine-health.com/topics/s...inestim02.html

scs
 

who know with any of this stuff-
one doc was ready to put one in for me next week
the other doc said dont do it-too many problems.
i am not on the pain meds you are-i wish i was-i wish i could tolerate them.
you can have a trial, then it is permanent. some people get relief.
i read on another forum that it works, and on another it doesnt.
i would talk to other people who have your same diagnosis and symtoms and have the scs and see what they say.
my doc said he would try to get in to cover both legs and feet but wasnt sure -what kind of an answer is that?
do these docs have them in their backs?
never the less, it must be working for some, or they wouldnt be prescribing them left and right.
best-
steff

I do know that Jerry Lewis wore the Medtronic device. He had it implanted. He said "I have never felt such relief in all my life".

So he found SOMETHING that worked!!!!

Thank goodness for that!!

Melody, thanks so much for that website. I had looked at a couple of others, but the information on them wasn't that good. Steff, I wish you could tolerate some pain drugs, too. Sounds like you might be a candidate for the stimulator, too. I go back to my doctor next Friday. I guess I will at least talk to him about it.

Hi Dakota:

Years ago, when Alan and I were on a journey to find out why he had neuropathy, we went to back doctor after back doctor. No one would help us. They did try the epidural on him. Didn't do anything for his pain (because the problem is auto-immune) and not his back.

But one doctor tried to talk to us about the Medtronic device and gave us some brochures. Alan didn't want to do it.

Don't know who is using it now, but hey, if it helps with the pain, why the heck not.

I will never understand one thing. Alan has his pn between certain toes. Not any other part of his body. Oh, he gets the burning feet sometimes, but mostly it's the stabbing, burning, buzzing, between his toes.

I cannot understand why they can't give him trigger point injections between his toes. I did ask his podiatrist and we were told "no, it does not apply to him". Now why not?? I've never gotten a good answer.

Oh, we are going to a meeting in September. I'm starting a new thread. Looks very interesting.

Melody

I dodn't know anything about trigger point injections. Wish I did.

HI There's a book called Pain Erasure by Bonnie Prudden. It's all about Trigger Point therapy. My husband did Trigger point therapy for my back and it helped tremendously with my low back spasms and bladder spasms.
As far as the spinal cord stimulator......I say go for it! If it doesn't work take it out. But I'd give it a try.....at least the trial and see if it works at all.
I do know what you mean about relying on pain meds and not wanting to be without them. I have a sleep disorder and I panic if I'm low on my sleep meds. I've had the problem for 40 yrs and taken meds for it for 30 yrs....
Let us know what you decide to do.......we're with ya, with what ever you decide!

Thanks, Roxie. I am really frightened of the intensity of my pain. Not only is it unpleasant (to say the least), but I don't think it is healthy to have that level of pain for more than a few minutes. I think that it is bad for the heart and brain and that it worsens future pain. And it affects my mood long term, I think. I think that it changes "things" in the brain, I'm just not sure what.

I agree. I'm having bad pain tonight and it affects my mood and everything about 'me'.....it's just the pits!
I would think that if you tried the spinal cord they would slowly lower your pain meds to make sure you weren't in pain. That would be something to talk to the dr. about ahead of time!

Hey Dakota:

We have to get you a mood thingee to put under your name.

Melody

HI Mel!
Sounds like Alan is doing really with the new boot and all! That's really great......gives me hope!

Yes, I certainly plan to do that. I have a lot of questions to ask. If he gets impatient with answering them, there is my answer: "Forget it!"

Hi. One of my docs was talking about this stimulator for me. Right now I'm not willing but at my next apt with some new docs I will talk about it. I understand and hear your fear. I was also suggested and they really wanted to do it and said very little side effects. Is a tunneled epidural catheter. Its gives med through the spine. For me this was to be able to do extreme reabilitation on my legs and is only in for 6 weeks. On another note and may look into this is acupuncture. I'm not into alternative stuff but at this point I may try it if not in my legs. Good luck in your choice. I understand on how hard it is. I hope you feel better

Thanks, Daniella. I'm going to try not to worry about it until I get more information, bbut it's hard.

Melody, I'm trying out the mood thing. Lets see if it works. I'm not real good at this stuff.

Thanks Mel
 

for the imformation it was excellent,makes one think...D i have been
thinking the same thing. As long as i can go back.
Mel i also wondered now is it Jerry Lewis are Jerry L. Lewis they both
sure threw themselves around. Ha Oh Dakota i wish and hope you
some peace,all of us.. My son tried that Trigger Point on me,i guess he's
walking now..ouch!!!! And he makes good money doing that.. Sue

Dakota:

Right now you are brooding. Let's hope that when you get some pain relief, you can update your mood.

So far (I don't know if you read my latest post about what we did for Alan's PN), but he's been virtually pain free for over 6 hours.

If this method lasts till tomorrow morning, then we know we found something out!!! Something really interesting.

Melody
P.S. If you didn't read about what I did with cotton balls, go to the thread about the Foot Center

Scs
 

:) My pain management doctors are all big fans of the SCS and make it sound like "no big deal." Of course that is because they are not implanted in the doctors' backs. I have resisted the SCS for several years since I have heard and read that the trial is not always an accurate predictor of success. :( The PM docs make it sound very simple and the procedure and recovery is anything but that. From the people I have spoken to that have tried the SCS or have had them removed, to get them programmed correctly is not the easiest either. It MIGHT lessen the pain, but the longer you have had the PN (mine is idiopathic, also) the less likely you are to get relief. I have tried many many meds and alternative treatments, but the pain level is still pretty high on a daily basis. If you can tolerate the meds and they are giving relief, why take the chance on such an unpredictable procedure. Be sure to do a lot more research, speak to others that have the SCS implanted or have had them removed, and if all else fails, agree to the trial. If you do decide to try the SCS, best of luck and let us know how you are doing. Have you ever considered the morphine pump or doesn't your pain clinic like that idea. Mine hates the pump for some reason? If you do decide upon the SCS, be sure to compare all the models available and take the smallest and the one with the recharable battery. Chat soon. Ss:hug:

scs
 

danielle-
what does this mean?
Is a tunneled epidural catheter. Its gives med through the spine. For me this was to be able to do extreme reabilitation on my legs and is only in for 6 weeks.
is it just for awhile then to get better? it cannot be for PN as it would go away that fast or would it?
or set me straight- i dont get it-what is the pain that you are having the pump for?
thanks
and to the person trying to decide about the scs-please let us know everything you find out. my docs vote one yes and one no- i cant take the drugs and i cant take the pain so i know what a bind you are in. how to decide is the question. we always want to believe that something will work.
i keep posting on everything possible to try to get relief.
steff

Hi. Sorry the cathter is so I can be comfortable doing rehab. I went to Cleveland clinic pain program and its full days of physical therapy. My pain was so bad that they wanted to do the catheter. I have pn in my legs but they want to treat it like Rsd though I have no other symptoms but the extreme sensitivity. I fear this catheter cause if no side effects why don't more people have it. I'm going to try something and have another opinion coming up. I need to try something cause my pain is going back again. Hang in there too.

Spinal Cord Stimulator
 

Hi everyone,
I just found out about this site. I am a 42 yr old man living in San Diego and have endured 3 back surgeries within the past 8 years. I still suffer with Chronic Back/leg pain on a daily basis and take medication to try to control it.
I am considering doing the trial to see if the stimulator will help me.
I have heard good things about it but of course after 3 surgeries, I am worried about going under the knife again. Not to mention to cost factor.
Anyone have a good result with the Spinal Cord Stimulator? I will probably have it at UCSD Pain Center in LaJolla, CA.
Thank you for any suggestions.
All the best to everyone.
Rick

Hi. I have not had the scs though that is what the pain doc wanted to do at ucla pain management. I after went to the pain doc at marina del ray anyhow he said for me and I am different then you obviously and my pain is in my legs that it should be one of the last things after all options. I am not saying this is you and I have heard mixed results. On the rsd board there are more people with it. So you may want to check it out. Sorry I don't have more info for you.

Does anybody know the cost of a SCS?. The cost in ireland is between $20,000 and $40,000. Health insurance will cover the implant but not the SCS. Its for the leg area. Thanks.

Since this thread was made, we have a new forum here at NeuroTalk about SCS and implantable devices.

Here is the link to it:
http://neurotalk.psychcentral.com/forum118.html

You might find more responses over there.;)

Just had SCS put in
 

Hi all!

I am new here and wanted to share my SCS experience. I have had chronic low back pain and sciatica for years. I had two herniated discs which were repaired. However the growth of scar tissue has caused sciatic nerve damage and as a result I have suffered somewhat debilitating leg and foot pain.

After going the conservative route with injections, drugs, PT for two years, I decided to give the SCS a try. The trial for me was short and easy. It worked like a charm. I had the permanent placed a week and a half ago the surgery and postop recovery has been extremely painful. I stayed in the hospital for 3 days for pain control and low oxygen levels.

My problem now is the dang thing doesn't work. I get twinges of tingling here and there but that's it. I'm seeing the doctor and the rep on Tuesday for reprogramming, but I'm scared that something has moved. :confused:

Has anyone else had a similar experience?

Thanks!

Mary

Hi Mary!
 

And Welcome!
I'm so sorry about the trouble you are having!

There's actually a forum here at NT specific to SCS's and Pain Pumps
Here's the link to get you there....click on:

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

Lots of wonderful support over there!
Caring
Rae
:hug:

Right there with you on the fear of the intensity of the pain. Everything I've read so far shows that it seems to be different for everyone. One person says it was the biggest mistake they've made while another says it's the best thing since sliced bread. If you're ablt to do the trial run that seems the most logical. If you are able to tolerate it and it brings relief I'm inclined to say go for it. I'm battling failed back surgery, neuropathy, and severe osteoporosis (only in the area of the surgery). I'm on mass doses of pain killers as well so I understand the fear you're feeling. I just feel like if there's any chance for relief you've gotta try it.
I wish you all the best and good luck no matter what your desicion. God willing relief is around the corner!