It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Arachnoiditis Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 09-23-2012, 12:19 PM   #1
Junior Member
(male)
 
Join Date: Jul 2008
Location: Central Florida USA
Posts: 12
buzman HB User
Cool SCS Trial/Implant

Hey All~~ is there anyone who has a spinal stimulator? Would love to know what success anyone has had. I realize each is different. How long does a trial last?
My Pain doc is recommending this. Have had 3 lumbar surgeries, the last in September 2009, being a fusion from L-3 to S-1. almost 3 years later was doing great, then got t-boned by a red light runner, messed me up bad again. L1-2 out of alignment now, caused what discs I had left to blow out completely. The worst pain is nerve root damage. MRI showed this and a ton of scar tissue. Been on NSAIDS, NORCO, Morphine, Dilaudid. Not much relief.
Decided to go try SCS at doctor's suggestion. trial is on Oct 9th. note sure what to expect. Any words of wisdom or advice? Anyone can share their story it would be helpful.

 
Reply With Quote
Old 09-23-2012, 12:37 PM   #2
Senior Veteran
(female)
 
Join Date: Nov 2010
Location: USA
Posts: 6,141
teteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB User
Re: SCS Trial/Implant

I am not a fan of SCS/neurotransmitters until and unless ALL other options have been considered...and in most cases, tried and failed. Did you surgeon indicate that there was nothing more he could do for you?

The problem I ran into is that some spine surgeons and most pain management doctors are too quick to recommend a trial of SCS, and tend to approach the trial as it is no big deal. It can be a lifesaver for some people, people that have no other options. But I really believe that it is recommended too casually to patients, and the many risks are not adequately explained and, in some cases, are not even presented to the patient.

Last edited by teteri66; 09-23-2012 at 12:39 PM.

 
Reply With Quote
The Following User Says Thank You to teteri66 For This Useful Post:
buzman (09-23-2012)
Sponsors Lightbulb
   
Old 09-23-2012, 12:40 PM   #3
Senior Veteran
(female)
 
Join Date: Nov 2010
Location: USA
Posts: 6,141
teteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB User
Re: SCS Trial/Implant

I should also ask where is the worst of your pain located? (back, leg, etc.)

 
Reply With Quote
Old 09-23-2012, 01:05 PM   #4
Junior Member
(male)
 
Join Date: Jul 2008
Location: Central Florida USA
Posts: 12
buzman HB User
Re: SCS Trial/Implant

worst pain in legs, then burning in back to the left of my incision, right about L4-5. left leg is worst. Toes go numb, then foot. I cannot stand >10-15 minutes at a time or walk very far. Sitting seems okay, but prolonged is never good for anyone with back problems, so I do manage getting up every hour or so at work. I cannot bend over at all, so I squat down sometimes, and when I return to standing position, this awful pain shoots down the front of my right leg and my right foot. I can say both my legs and back are equally, but often the legs more than anything and that burning is getting worse. Thank you for your quick reply

 
Reply With Quote
Old 09-23-2012, 01:41 PM   #5
Senior Veteran
(female)
 
Join Date: Nov 2010
Location: USA
Posts: 6,141
teteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB User
Re: SCS Trial/Implant

Was any further surgery suggested?

 
Reply With Quote
Old 09-23-2012, 06:37 PM   #6
Senior Member
(male)
 
Join Date: May 2011
Location: Mount Holly, NJ USA
Posts: 117
deanh HB Userdeanh HB Userdeanh HB Userdeanh HB Userdeanh HB Userdeanh HB Userdeanh HB User
Re: SCS Trial/Implant

I had a perithial implant in June. Will try to help if I can.

 
Reply With Quote
Old 09-23-2012, 07:54 PM   #7
Junior Member
(male)
 
Join Date: Jul 2008
Location: Central Florida USA
Posts: 12
buzman HB User
Re: SCS Trial/Implant

yes more surgery, another fusion, remove some existing hardware, no guarantee unless surgeon was inside to tell for sure. my decision at this point.

 
Reply With Quote
Old 09-23-2012, 09:34 PM   #8
Senior Veteran
(female)
 
Join Date: Nov 2010
Location: USA
Posts: 6,141
teteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB User
Re: SCS Trial/Implant

I'm not quite sure how a SCS would help you long term...and maybe even short term. From your description, it sounds like your spine will continue to degenerate in the area above the fusion. You may be able to block out the pain signals to some extent, but that won't keep your spine from becoming more unstable...which will result in more potential for nerve damage, and more nerve pain.

One thing you know for certain is that the disc height in those upper lumbar discs that are pancaking are not going to magically regain their height.

You may want to get several opinions from unrelated spine surgeons before deciding to go ahead with the neurotransmitter. And be sure the doctor who will do the trial is well-qualified and has implanted many of the transmitters. This is still spine surgery, after all, and you want the most qualified doctor for the job that is available to you.

 
Reply With Quote
Old 09-24-2012, 04:51 AM   #9
Veteran
(female)
 
Whynowthis's Avatar
 
Join Date: Apr 2012
Location: Colorado
Posts: 360
Whynowthis HB UserWhynowthis HB UserWhynowthis HB UserWhynowthis HB UserWhynowthis HB UserWhynowthis HB UserWhynowthis HB UserWhynowthis HB UserWhynowthis HB UserWhynowthis HB UserWhynowthis HB User
Re: SCS Trial/Implant

Quote:
Originally Posted by buzman View Post
yes more surgery, another fusion, remove some existing hardware, no guarantee unless surgeon was inside to tell for sure. my decision at this point.
With nerve root scarring, did they mention arachnoiditis?? It sure sounds like that to me!!! If you have that - and a lot of doctors are reluctant to diagnose that-- any additional surgery will cause more scarring and will worsen the problem. You may want to research that and if it sounds like you, mention it to your doctor!! If you have arachnoiditis, you will want to know!! Good luck and please keep us posted! And if you have any questions regarding arachnoiditis, please let me know as unfortunately I have been afflicted with this terrible disease and can help answer questions you might have.

 
Reply With Quote
Old 09-24-2012, 05:59 AM   #10
Senior Veteran
(female)
 
Join Date: Nov 2010
Location: USA
Posts: 6,141
teteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB User
Re: SCS Trial/Implant

If arachnoiditis were involved, would that rule out having the neurotransmitter implanted?

 
Reply With Quote
Old 09-24-2012, 06:23 AM   #11
Veteran
(female)
 
Whynowthis's Avatar
 
Join Date: Apr 2012
Location: Colorado
Posts: 360
Whynowthis HB UserWhynowthis HB UserWhynowthis HB UserWhynowthis HB UserWhynowthis HB UserWhynowthis HB UserWhynowthis HB UserWhynowthis HB UserWhynowthis HB UserWhynowthis HB UserWhynowthis HB User
Re: SCS Trial/Implant

Quote:
Originally Posted by teteri66 View Post
If arachnoiditis were involved, would that rule out having the neurotransmitter implanted?
There are different theories on that. Some doctors encourage the use of SCS as treatment for arachnoiditis, while others say there should be NO surgery at all in the spine (for arachnoiditis patients) as it can worsen things. I'd speak with a neurosurgeon and weigh my options.

Last edited by Whynowthis; 09-24-2012 at 10:00 AM.

 
Reply With Quote
The Following User Says Thank You to Whynowthis For This Useful Post:
buzman (09-24-2012)
Old 09-24-2012, 02:24 PM   #12
Senior Veteran
(female)
 
backhurtz's Avatar
 
Join Date: Oct 2008
Location: NY, USA
Posts: 516
backhurtz HB Userbackhurtz HB Userbackhurtz HB Userbackhurtz HB Userbackhurtz HB Userbackhurtz HB Userbackhurtz HB Userbackhurtz HB Userbackhurtz HB Userbackhurtz HB Userbackhurtz HB User
Re: SCS Trial/Implant

I can explain how the trial is done, and what you can expect- and should look for as far as what constitutes a so called "successful trial", and such...
The leads are usually placed above the area of where the problem area is your spine- for lumbar issues, the leads are usually placed in the low thoracic area. They are threaded to the level that the surgeon feels will give the best coverage of pain for the patient. The company rep from the scs is present to program the unit and to help determine the best settings for the patient during the trial , to answer any questions you may have, and to show you how to change the settings. The trial itself is usually between 3-7 days long, depending on how your surgeon wants to run the trial period. The temporary leads are taped securely down your back, to the unit, which you will wear on a belt for the duration of the trial period. Once you are recovered from the anesthesia (- usually conscious sedation), the rep goes over the operation of the unit and you are sent home.
The standards set by the various scs companies state that a successful trial is when the pain levels are reduced for the patient by 50% or greater. What I have found is that some pm practices try to convince the patient that ANY reduction in pain constitutes a "successful trial". I disagree. Variation from the recommendations of the manufacturer seem to lead to more dissatisfaction with the units than most other problems. You need to be the one to determine a couple of things, if you can adjust to the sensation of the scs, can live with the restrictions of the unit, can live with having the wires and leads in your body- some patients find post permanent implant that they can not adjust to the leads or having the battery there . The one big consideration that is often downplayed by most PM's is that you can not have an MRI again , once the permanent implant is done. Even if the battery pack is removed later on, once the leads are scarred in there is usually no way to remove the leads, so MRI's are out of the question because the magnets can cause the leads to overheat and then cause internal burning.
I always tell people that unless they get that 50% reduction in pain, and are not concerned about needing future MRI's,( despite all the reports from doctors, CT scans do not always give the best results when it comes to our medical conditions, so) it is something to give serious thought to the future of our medical care.
Some of the problems that can occur during and after the implant of the leads and battery units- replacement of the battery packs, for replacement reasons or for failure of the unit to work properly, the leads can and do migrate if they are not secured, and even when secured, they can become unattached to the battery pack or move out of position. In the event that either of those things happen, surgery to revise the leads needs to happen if reprogramming doesn't help. SCS is recommended for the treatment of nerve pain, not mechanical pain. In a patient who has a mix of both, it may not be the best option, but in some individuals, they do get a mix of pain relief from both conditions, although this is not the norm...the unit itself can fail- patients who got good relief during the trial, can find that they don't get the same coverage during the permanent implant. Why? Who knows...and again, having foreign devices in the body can cause a reaction- sometimes a metal allergy can become worse due to the battery pack or leads...even though they are surgical metal..
I decided not to go through the trial for my own reasons but spent considerable time talking to patients who had and those who's failed or had it removed later...and I learned a lot. Also before the trial , you should have been sent for a psych consult to make sure that it was a good idea and that your expectations are realistic..if not, I would not even bother with the trial...

 
Reply With Quote
The Following User Says Thank You to backhurtz For This Useful Post:
buzman (09-24-2012)
Old 09-24-2012, 03:58 PM   #13
Junior Member
(male)
 
Join Date: Jul 2008
Location: Central Florida USA
Posts: 12
buzman HB User
Re: SCS Trial/Implant

Quote:
Originally Posted by Whynowthis View Post
There are different theories on that. Some doctors encourage the use of SCS as treatment for arachnoiditis, while others say there should be NO surgery at all in the spine (for arachnoiditis patients) as it can worsen things. I'd speak with a neurosurgeon and weigh my options.
Thanks for your reply. I have a very good neurosurgeon. Top in my state. I'm all over the place reading and listening to other patient's stories. So..... jury isn't back yet.

 
Reply With Quote
Old 09-24-2012, 04:08 PM   #14
Junior Member
(male)
 
Join Date: Jul 2008
Location: Central Florida USA
Posts: 12
buzman HB User
Re: SCS Trial/Implant

Quote:
Originally Posted by Whynowthis View Post
With nerve root scarring, did they mention arachnoiditis?? It sure sounds like that to me!!! If you have that - and a lot of doctors are reluctant to diagnose that-- any additional surgery will cause more scarring and will worsen the problem. You may want to research that and if it sounds like you, mention it to your doctor!! If you have arachnoiditis, you will want to know!! Good luck and please keep us posted! And if you have any questions regarding arachnoiditis, please let me know as unfortunately I have been afflicted with this terrible disease and can help answer questions you might have.
We can all agree more surgery = bad = more scar tissue. I had a partial Lami in sept 2008. Then came the full monty fusion, screws, rods, etc in Oct 2009. During my 2009 surgery it took Dr. almost 5 hours to clean out all the scar tissue from the previous surgery, then another 5-1/2 to get all hardware in place. Over 10 hours--just crazy. Dr. said I had just gobs of scar tissue, it was spreading like wild flowers or something. He warned me I could have problems in the future. Well I didn't have that much pain from Oct 2009 until March 2012 when I was broadsided by a red light runner. Totally messed everything up.
No.... I don't think I will have surgery again, I've been to two other neurosurgeons, orthopedic and another PM. They all pretty much agree with the same course of action(s) I could take. Surgery, Spinal stimulator, pain pump, or just stay on oral pain meds and getting epidural injections as often as I can (they do help for 4-5 months)..... Lots of thinking to do.
Thanks for your reply and information. I will keep all posted. My best

 
Reply With Quote
Reply Reply




Thread Tools

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 Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



gmak (4), Moldova (2), Whynowthis (2), teteri66 (2), ladybud (1), I torch glass (1), luvinmusiq (1), jewlz67 (1), agelbert (1), Zims mom (1)

Site Wide Totals

teteri66 (1136), MSJayhawk (941), Apollo123 (855), janewhite1 (823), Titchou (769), Gabriel (743), ladybud (667), sammy64 (666), midwest1 (654), BlueSkies14 (610)



All times are GMT -7. The time now is 06:10 AM.



Site owned and operated by HealthBoards.com™
Copyright and Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!