Chronic Pain Whatever the cause, support for managing long term or intractable pain.


advertisement
Reply
 
Thread Tools Display Modes
Old 01-08-2009, 02:42 PM #21
Fancylady_2006's Avatar
Fancylady_2006 Fancylady_2006 is offline
Grand Magnate
 
Join Date: Aug 2006
Location: Western IN
Posts: 3,728
15 yr Member
Fancylady_2006 Fancylady_2006 is offline
Grand Magnate
Fancylady_2006's Avatar
 
Join Date: Aug 2006
Location: Western IN
Posts: 3,728
15 yr Member
Thumbs Up Hi Scared 4 Life

I have had one and I did request to be put asleep. And thats what they did. I have had other things done since this, even surgeries and I didn't feel a thing. To tell you the truth, you don't hardly remember it. They use a drug called versaid (not sure this spelled right) . I even watched the last surgery so don't let that stop you, and I felt nothing. Relax
Fancy
__________________

.
She who hides nothing, has nothing to hide~
Fancylady_2006 is offline   Reply With QuoteReply With Quote

advertisement
Old 01-23-2009, 02:57 AM #22
redman179 redman179 is offline
New Member
 
Join Date: Jan 2009
Location: joliet ii
Posts: 3
15 yr Member
redman179 redman179 is offline
New Member
 
Join Date: Jan 2009
Location: joliet ii
Posts: 3
15 yr Member
Default crps level1

Quote:
Originally Posted by nancy-h View Post
Hi folks;

Well, in a couple of days, I will have a Spinal Cord Stimulator implanted to control the incredible pain I get from my neuropathy (idiopathic).

My test was very positive and I'm hoping that this will be the solution for 10 years of horrible pain. Just wondering if anyone else has had this done for pain? Any feedback?

Nancy-H
i just got scs mon. contact me **
redman179 is offline   Reply With QuoteReply With Quote
Old 01-29-2009, 08:36 PM #23
dajo dajo is offline
New Member
 
Join Date: Jan 2009
Posts: 2
15 yr Member
dajo dajo is offline
New Member
 
Join Date: Jan 2009
Posts: 2
15 yr Member
Frown Spinal cord stimulator feedback

Quote:
Originally Posted by nancy-h View Post
Hi folks;

Well, in a couple of days, I will have a Spinal Cord Stimulator implanted to control the incredible pain I get from my neuropathy (idiopathic).

My test was very positive and I'm hoping that this will be the solution for 10 years of horrible pain. Just wondering if anyone else has had this done for pain? Any feedback?

Nancy-H
hello folks,

Well where do i begin...I to have had the SCS implant about 3 yrs ago. The Dr. told me it was my last option. So I went through 2 trails. the first one had complications, the second one gave some relief. So I went ahead with the permanent implant. Unfortunately, within a few weeks I was in the Drs. with major complaints. The rep from the SCS company tried to make computer none surgical adjustments so that the stimulation could reach the right areas. It was reach all the wrong areas. Well I met with multliple reps 8 times within 3 months and all they(Dr.too) would say was to go home and try the programed settings on my own. So I did what they told me to do.Things became worse! I started getting debilitating external and internal burning and pain down both of my legs, and back. Weakness in both legs. The Dr. scheduled a surgical adjustment for the leads. By the time of that surgery he was doing a emergency removal because my legs gave out. I have been in a wheelchair ever since and can not walk. Still experiencing horrific pain. You see I was walking before the implant!
dajo is offline   Reply With QuoteReply With Quote
Old 01-30-2009, 10:10 AM #24
Fancylady_2006's Avatar
Fancylady_2006 Fancylady_2006 is offline
Grand Magnate
 
Join Date: Aug 2006
Location: Western IN
Posts: 3,728
15 yr Member
Fancylady_2006 Fancylady_2006 is offline
Grand Magnate
Fancylady_2006's Avatar
 
Join Date: Aug 2006
Location: Western IN
Posts: 3,728
15 yr Member
Arrow Hi dajo~

I didn't like mine either, and had it taken out in 1 yr by another doctor. I don't usually talk about it anymore, because nobody want to hear about it. I must admit your problem is the worse I've heard of tho.

I had a Rep from hell that wouldn't come and adjust mine at all. he finally sent another person, but it didn't do any good. It a rare case when you hear of someone that likes the scs. Sorry you had so much trouble.
Fancy
__________________

.
She who hides nothing, has nothing to hide~
Fancylady_2006 is offline   Reply With QuoteReply With Quote
Old 05-10-2009, 11:32 AM #25
LovelyIris LovelyIris is offline
New Member
 
Join Date: Sep 2007
Posts: 4
15 yr Member
LovelyIris LovelyIris is offline
New Member
 
Join Date: Sep 2007
Posts: 4
15 yr Member
Teeth My SCS

I wanted to add my experience. I suffer from permanent S1 nerve damage after 3 back surgeries at L5-S1. The nerve damage actually occurred prior to any of the surgeries because I waited a mere 5 months to get medical treatment (thinking I could go to the chiropractor and think positive and would get better.) Sometimes people have years before they will have nerve damage, and for others, just a few months. That was me.

Anyhoo....I got my permanent SCS on 1.5.09 and my life has changed. I have lost 22 lbs, can go and do anything I want, can drive 8+ hours and travel, you name it. My body is finally getting back in shape after being reclined 23 hours a day for last several years. The S1 nerve is affected by sitting, standing, walking - really movement of any kind. I had burning/searing pain 24/7. With the SCS, I still have pain, but it is different. Hard to explain. I still do not bend, lift or twist. I have "grabbers/grippers" all over the house to pick things up for me when they fall, since I DO NOT BEND. I do not do a single thing that would cause my leads to break free of the scar down and move. Trust me on that one. But still, I have my life back. I was reclined in a chair for 23 hours a day. The fact that I am up and moving is a God send.

If you have ever sat in a massage chair at a salon, imagine being your own "massage chair" on the inside. That is what if feels like to me. I have buzzing/tingling from my buttocks to my toes and it is the most comforting, awesome feeling in the world. Beats 24/7 burning pain any day. And I am one of the lucky ones that can turn my SCS up just right and get a special reaction, the big "O" that so many nerve damage sufferers lose the ability to experience.

I am still on my long-acting meds, but barely take any breakthrough meds or muscle relaxers anymore, so that is a big decrease in meds for me. I believe we will try to decrease meds overall very slowly. When I turn off the SCS, I have that burning/searing pain. Therefore, I keep the SCS on 24 hours a day.

Regarding the 6+ weeks after surgery. When they say no bending, lifting or twisting, that is IMPERATIVE. You MUST NOT do anything - no lifting arms, NOTHING. My husband shaved my legs, helped me dress, fixed my hair, whatever I needed because I was NOT moving until those leads scarred in place.

During my trial, I came home and in the first day my leads moved down 1 inch, and I didn't even know what I did that caused that. So with the permanent, I seriously did not do a single thing that could possibly move those leads. 6+ weeks of being super careful is SO worth it!!!! Trust me!!!

When I had the trial and permanent placement, the docs (2 different ones) had major difficulties due to scar tissue and what my neurosurgeon calls an "anomaly". I was just glad when they found the "sweet spot" and I was a walking mummy until it scarred in. Even raising your arms ONE TIME can cause the leads to scoot down out of position. That part is frustrating but getting the pain relief is such an answer to prayer if you focus on that it really is doable.

I have the ANS/St. Jude Eon Mini and am very thrilled with it. My pulse generator is implanted in my upper right hip and the odd thing is that I was already numb in that location (I have lateral numbness from hip to toes) and I had no recovery pain from that at all. Totally unexpected and weird. lol

Side effects I have are some nausea if I turn the SCS up high, it is an appetite suppressant (we think) and I eat small meals, much like I imagine a "skinny person" eats normally. lol I am also possibly having bladder dysfunction, although I had this PRIOR to the SCS. We are investigating that more now. Sometimes my bladder just doesn't seem to know how to pee - I have to employ my abdominal muscles to empty my bladder. But like I said, I had this BEFORE the SCS. Just don't know if the SCS is aggravating it, making it worse, etc. If I were to lose all bladder function and have to wear diapers, I am unsure if I would remove the SCS. That is how much pain relief I get. I NEVER want to return to the 24/7 burning pain ever again.

One day I went to turn on my remote control and it acting up and I almost had an anxiety attack. People, I'm telling you, when you find something that relieves this horrid pain, you bond with it!! lol Thankfully, it just needed new batteries.

I feel very blessed that I was approved for this pain management device. I haven't been cured and I'm still on meds, but I'm just fine with that, as that was my expectation. I knew that going in. But to be 42 years old and get to act 42 again rather than 95? Priceless.

Take care,

LovelyIris
LovelyIris is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
finz (05-16-2009)
Old 05-15-2009, 10:57 PM #26
jaybee333 jaybee333 is offline
New Member
 
Join Date: May 2009
Location: Akron, Ohio
Posts: 1
15 yr Member
jaybee333 jaybee333 is offline
New Member
 
Join Date: May 2009
Location: Akron, Ohio
Posts: 1
15 yr Member
Default

Hi. I just wanted to say thank you for your post. I just had the leads from my trial spinal cord stimulator removed today. I was on the fence about having the surgery to have the permanent one put in only because they couldn't get the main area that I needed relief in to be able to feel any tingling or anything. My L5/S1 and L3/L4 discs are herniated and that is the main area I wanted them to target. Unfortunately, they were able to get above and below that area, including down into my legs, just not that one spot on my lower back. They explained how the leads with the paddles would have much more specific coverage, but I was still worried that if I have the surgery I won't get relief exactly where I need it the most. Your post at least lets me know that there are people out there getting relief from it, so what do I really have to lose? It can always be removed if it doesn't work for me.
jaybee333 is offline   Reply With QuoteReply With Quote
Old 05-16-2009, 03:13 AM #27
finz finz is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,804
15 yr Member
finz finz is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,804
15 yr Member
Default

Thanks Iris !

I know that we are all different and what works for one might not work for everyone, but I dream about a solution like this that could take the edge off. Thanks too for stressing strict adherence to the no bending/lifting rule.
finz is offline   Reply With QuoteReply With Quote
Old 05-19-2009, 08:30 AM #28
Dejibo's Avatar
Dejibo Dejibo is offline
Elder
 
Join Date: Jan 2008
Location: New Hampshire
Posts: 7,332
15 yr Member
Dejibo Dejibo is offline
Elder
Dejibo's Avatar
 
Join Date: Jan 2008
Location: New Hampshire
Posts: 7,332
15 yr Member
Default

Versed! wooo! I love that ride.

I had a SCS implanted after an L3 L4 fx of my back. back pain, leg pain and an increasing morphine prescription led me to allow them to implant it. My legs buzzed, my back ached, and the rep kept trying to help me adjust it. It wasnt fun, and it was stressful. I was in worse shape with the stimulator than I would have been to just take the morphine. After a few months of trial and error and incredible frustration I begged to have it simply removed. My quality of life took a dive, and I spend more time in MD offices, hosptials, and clinics than I did on my own couch. it just wasnt worth it. Some said "hang in there, give it a chance." or "you just need it adjusted correctly" or "let us do more surgery to replant the leads YOU must have pulled them out of place" I was fed up, and gave up.

they told me the lower Lubar region is the hardest to provide blocked pain relief for, as its at the end of the spinal column and very little room to wiggle in.

I went on a run of learning massage techniques, meditation stuff, relaxation stuff, and I am still on a maintenance dose of MS contin. Life is MUCH better, and its because I took the wheel and turned my life in a new direction. AWAY from the advice of so many others. It works for me, and thats I could ask for.
__________________
RRMS 3/26/07
.

Betaseron 5/18/07
.

Elevated LFTs Beta DC 7/07
Copaxone 8/7/07
.



.
Dejibo is offline   Reply With QuoteReply With Quote
Old 08-02-2013, 10:11 PM #29
tmyaco76 tmyaco76 is offline
Newly Joined
 
Join Date: Jul 2013
Location: Syracuse,New York
Posts: 2
10 yr Member
tmyaco76 tmyaco76 is offline
Newly Joined
 
Join Date: Jul 2013
Location: Syracuse,New York
Posts: 2
10 yr Member
Default

Quote:
Originally Posted by jaybee333 View Post
Hi. I just wanted to say thank you for your post. I just had the leads from my trial spinal cord stimulator removed today. I was on the fence about having the surgery to have the permanent one put in only because they couldn't get the main area that I needed relief in to be able to feel any tingling or anything. My L5/S1 and L3/L4 discs are herniated and that is the main area I wanted them to target. Unfortunately, they were able to get above and below that area, including down into my legs, just not that one spot on my lower back. They explained how the leads with the paddles would have much more specific coverage, but I was still worried that if I have the surgery I won't get relief exactly where I need it the most. Your post at least lets me know that there are people out there getting relief from it, so what do I really have to lose? It can always be removed if it doesn't work for me.
Hi My leads moved during the trial too. But the rep. has told me when I have my surgery implant they are going to put the lead up higher so I get better coverage. In surgery they are going to attach to lead to my bones in a few spots so they don't move so easy. It''s an laminectomy. My will be made by St. Jude.
tmyaco76 is offline   Reply With QuoteReply With Quote
Old 08-03-2013, 06:00 PM #30
steelerman1969 steelerman1969 is offline
Newly Joined
 
Join Date: Aug 2013
Posts: 1
10 yr Member
steelerman1969 steelerman1969 is offline
Newly Joined
 
Join Date: Aug 2013
Posts: 1
10 yr Member
Default Stimulator

Nancy,

I had the temporary stimulator installed and it was absolutely wonderful. I experienced 80% pain reduction within 2 days. Where mine went wrong is the doctor did not get the permanent one in the same location. Right now my pain is as bad as it was before they installed this, almost $200,000 piece of equipment. I have had it adjusted 5 times and still cant get the relief I had before. This stimulator is a crap shoot really. The doctor doesn't understand why I can't get the relief I had before so it is an ongoing battle. I know this probably doesn't help you much but just know your not in this alone.
steelerman1969 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Bestyer1 (09-29-2013)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Spinal Cord Stimulator. Dakota Peripheral Neuropathy 26 08-15-2010 06:50 AM
Spinal Cord Stimulator Leesa3500 Chronic Pain 2 12-12-2007 02:10 PM
Spinal cord stimulator? daniella Peripheral Neuropathy 5 10-15-2007 10:20 AM
Spinal Cord Stimulator susanhd Chronic Pain 2 03-28-2007 03:35 AM
Spinal cord stimulator TerriM Reflex Sympathetic Dystrophy (RSD and CRPS) 2 10-30-2006 11:00 AM


All times are GMT -5. The time now is 06:37 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.