New Member - and SCS Paddle leads

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CRPSpatient
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Date Joined Mar 2011
Total Posts : 1276
   Posted 3/5/2011 5:33 AM (GMT -6)   
Hi to everyone. As a a quick introduction - I'm 26 and I've had Complex Regional Pain Syndrome (formerly Reflex Sympathetic Dystrophy) since I was 14. Started in my right leg but is now full body. Also have dystonia with some contractures, hypermobile joints elsewhere, bursitis, (non-med related) gastroparesis, orthostatic hypotension, & low grade osteoarthritis.

A google search brought me here because quite a few of you seem to have spinal cord stims. I had my first SCS implanted in 2006 with a percutaneous lead to cover my right leg. Worked really well - don't know if any of you are familiar with CRPS, but it causes excruciating neuropathic pain and allodynia - so even a light breeze or gentle touch is painful. The stim got me from a leg so painful I couldn't wear long pants, a sock or a shoe, to weight-bearing with crutches (a 9/10 pain to 6/10 pain) within a couple of weeks. When the CRPS started spreading, my PM doctor put a new battery and second perc. lead in to cover my left leg. It migrated within a week of surgery, kinked and was replaced a few months later (now late 2008). The new lead never worked well and the surgery to replace it caused the CRPS to spread to my lower back. We've tried recently to get the newer lead going again and no matter what my tech does with it, it feels like someone is frying my spine - from its position on the x-rays he feels that it has shifted and is coming into contact with the yellow ligament.

Because it's moved twice now, his suggestion is a paddle lead. But he was telling me that there is now a procedure in the UK - and has just been introduced into Australia (actually by the bloke who did my first stim) for implanting a type of paddle in the same way as they do the perc. leads.

So - with apologies for the rambling post - does anyone know anything about these new paddle leads? Has anybody had one placed?

Cheers
Laura :-)

Post Edited (CRPSpatient) : 3/5/2011 5:01:55 AM (GMT-7)


Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 3/5/2011 10:16 AM (GMT -6)   
Hey Laura,
 
I've also got CRPS, had it since 2007, and like most of us it's already started spreading.
 
I recently underwent my trial where I was informed by my PM doc that he was recommending the paddle leads. The reasoning was, better contact, less chance of migration. Also now they supposed suture the leads into place. How I'm not sure as I'm at a standstill. Within the last year 3 seperate surgeons had patients end up with complications and end up paralyized. As a result I've successfully done the trial, but now can't find a surgeon willing to do my permanent implant; and with mine having to be all the way up in my neck it adds oodles of risks.
 
I don't know of anyone with the paddle leads, but as I said, they're supposed to be the newest and greatest thing, way better then the normal leads. Inquire about the suturing of your leads as well as that should help cease the migration issue.
 
Also, if you have a link about this new procedure, and could let me know the name of your doctor, I would appreciate it!
 
And welcome aboard the HellingWell Forums!
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled, on Percoset.
February 2011 successful SCSU trial
No surgeon willing to do my SCSU Implant

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 3/5/2011 10:43 AM (GMT -6)   
Hi CRPS and Rhaevin,
The paddle leads information can be found on the manufacturer's websites. There are several types of paddle leads, which as Rhaevin said, are supposed to provide much better contact and coverage than the traditional single round leads........they are anchored to the vertebra where the surgeon uses stitches to hold the leads in place. It sometimes requires what is called a laminectomy to place the lead permanently.
The good thing about the paddle leads is that it allows for more variations in the programs that can be used to help control the pain.
www.medtronic. com and http://www.poweroveryourpain.com/ might help explain the paddle leads a bit better.
Good luck,
Sandi M

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 3/5/2011 10:12 PM (GMT -6)   
Cheers Sandi - I know a fair bit about the leads, different prodedures, etc.

It's just that these leads (from St Judes/ANS) are apparently a new thing. The feedback from my tech, plus the literature out there suggests that they work well and are fairly low risk as these things go - but it's always nice to get some personal opinions. There's absolutely no way that I am going to have paddle leads placed if it's going to require a laminectomy, because I already have CRPS in my back and even having a new perc. lead placed runs the risk of making it worse. Laminectomy would be too dangerous, even for the potential benefit of more widespread coverage and a more stable lead. Thanks both of you for the advice :)

Laura

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 3/5/2011 11:38 PM (GMT -6)   
Hi Laura!!

And welcome to the Chronic Pain family! I'm really glad you decided to join us especially since you not only bring a wealth of knowledge but this has been a topic of discussion in this forum and also in the Fibromyalgia forum. We have several members who are looking into using stims. It's not something that everyone gets and has knowledge about and I'm sure it takes some serious thought before you consider going ahead with this type of procedure.

I have fibromyalgia and some lower back disc issues but no one every considered stims for fibro until recently. There are a few doctors who are having good success with it currently so some day it just might help those with fibro also.

I do wish you the best of luck and please keep in touch...K?

Chutz
Moderator on the Fibromyalgia and Chronic Pain forums
~*~*~*~*~*~*~
Daily Donnybrook: Fibromyalgia, Insulin Dependent Diabetes. Ulcerative Colitis, Rare form of Dermatitis, Collapsed Disk, Osteoarthritis (especially in right hand and neck) and a couple of other adjunct agitations.

"Gravitation is not responsible for people falling in love." Albert Einstein

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 3/6/2011 3:33 AM (GMT -6)   
Hi Chutz,

Thank you very much for the welcome. Fibromyalgia is one of the additional possibles on my ddx list in addition to the CRPS, because my pain is so widespread now - certainly it's common for it to occur in CRPS patients and vice versa. I've never heard of spinal stims being used for fibro but I know on a CRPS forum I live in, there was a bit of talk a while back about peripheral nerve stims being used to help fibro patients. It's certainly a fascinating area...one of those things it'd be good to observe from the outside rather than inside...

Wealth of knowledge...sadly yes. If anyone has any questions about any CRPS treatment out there, I can probably answer them. My treatments to date -

Meds - Endep, Neurontin, Lyrica, Cymbalta, Pristiq, Seroquel, Tramdol/Zydol, Methadone, Jurnista (hydromorphone), Durogesic patches, oral Baclofen, Oxycodone, Mobic, Topamax
Other treatments - nerve blocks, botox, ketamine, physiotherapy, mirror therapy, graded motor imagery
Surgical - SCS, intrathecal pump

Currently on 30mg Oxycontin (ER) twice daily + whatever IR I need for breakthrough pain, 50mg Topamax twice daily, 7.5-15mg Mobic twice daily (plus other meds for other issues), SCS, Pump with baclofen and bupivacaine, and LOTS of physio.

justanotherday
Regular Member


Date Joined Mar 2011
Total Posts : 179
   Posted 3/6/2011 7:26 AM (GMT -6)   
Hi Laura,

I'm also having 2 of the St Judes Eon Mini SCS's implanted. I just wanted to pop on real quick and let you know that they do know require a laminectomy for those paddles. They are stitched in though and ANS has a wonderful website. I know the rep I spoke with also gave me her personal cell number to call with any questions and ANS also has 24 hour customer service that can also answer any questions.

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 3/6/2011 8:14 AM (GMT -6)   
Hi Justanotherday.

Good luck with your implant. The paddle that doesn't require laminectomy is very new - they only got the patent through on it last year and I think it's only been in use for a few weeks in Australia, a few months in the UK and Europe and has not yet been used in North America.

I don't know much about it other than what my tech was telling me the other day. I believe that the paddle is folded and is implanted the same way as the percutaneous leads - just with a much larger introducer, and then unfolds once inserted. It works the same way as a regular paddle - better coverage, less chance of lead migration - without the need for laminectomy. My tech is making a report to my current pain specialist and getting him to refer me back to the doctor who did my first SCS - I see my PM in a few weeks, so I'll report back as soon as I know more!!

justanotherday
Regular Member


Date Joined Mar 2011
Total Posts : 179
   Posted 3/6/2011 8:29 AM (GMT -6)   
I had to go and pull my packet back out. St Judes website is Poweroveryourpain.com. It has the info on there on how they attach the paddle leads. Hope it helps some.

I know that they had told me there is only about 5 doc's in the US that are qualified to do the trials for St Judes. I've been seeing Dr Greenspan for quite some time and he's had excellent results with the Eon Mini and Occipital Neuromodulation. I know he's also had good results using it for Fibro pain.

Good luck to you also. Hopefully it works equally as well for you!!!

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 3/6/2011 8:38 AM (GMT -6)   
Thanks for the site. It's interesting that they don't mention their new leads - I guess maybe because it's a US site and they're not available to you guys yet?

I've had mixed results with mine over the last 5 1/2 years - it's mainly because of the lead migration that I'm looking at the new leads. Laminectomy is a no-go for me as I said before.

If you're interested, I found the patent for the new paddle lead: http://www.freepatentsonline.com/20100036469.pdf

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 3/6/2011 11:07 AM (GMT -6)   
Lauara,
 
Chutz had posted this info about a week ago about the new treatments. It might be something else to research:
 
 
It's about the nerve stim for fibro patients. Big thanks to Chutz for posting it!
 
The ketamine treatment you did, was that the ketamine induced coma? Also, I know my doc wanted me to have the paddle leads done, but if there's a new procedure that'll obviously still have the paddle leads, but way less risks I'd love any and all info you have on it. For now my stim implant has been tabled due to the risks involved. With my CRPS being in my right arm, from my fingers to my shoulder, it means leads all the way up in my cervical area. The risk factor is so high that most surgeons won't touch me. So any and all help/info on this doctor you mentioned would be appreciated. Surely they'll eventually do this new procedure in the states, and if not, I have friends in Australia.... maybe I can go visit.
 
Glad you found this place.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled, on Percoset.
February 2011 successful SCSU trial
No surgeon willing to do my SCSU Implant

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 3/6/2011 5:21 PM (GMT -6)   
Rhaevin,

Definitely come visit your friends in Australia! We've a few good doctors here ;) I don't know many people who've got an upper body stim, mostly lower body. One friend has it for her leg and one arm and has quite a good result with it now, but it's taken a long time and a lot of revisions for them to get it right for her. Don't think I'm going to touch my upper body - my hands and arms are bad when they flare but between those I can usually manage it in other ways.

The ketamine I've had was 3 x 5 day sub-anaesthetic infusions, but they were only of marginal help. The first I had a bad reaction to - I've a few funny issues with my heart rate (doctors think it's something else that I can thank CRPS for...) and at the time I had the first K infusion I was already running at a resting heart rate of around 120bpm, which had been going on for a few months. As soon as the ketamine hit my system my HR shot up to nearly 200, I couldn't breathe properly, went hot red everywhere...and they had to stop it. Just before Christmas I had a really bad flare and my dr decided to try it again but starting at a much lower dose and it was okay. Normally I spend my time between a wheelchair- partly because of pain, partly because of dystonia - and crutches, and for three days after the infusion stopped, I didn't use the chair. Last one (mid Jan) wasn't so good though - I had no pain relief from it, just made me sick and dizzy.

Will email you about the support group sites :)

Laura

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 3/6/2011 11:15 PM (GMT -6)   
Wow Laura, that sounds like one wild ride with the ketamine! Think I'll cross that one off my list of "hmmm, maybe I should try this". I know I read an article about using ketamine induced coma's, but most of those treatments were taking part in Brazil. Yours sounds akin to the stallate ganglion nerve blocks we've both undergone.
 
Unfortunately my CRPS has started in my upper extermities, and given I'm also right handed, it makes life interesting to say the least. When I was first diagnosed I was told the SCS unit was really my only hope, and my doctor was also hoping to use it to help decrease my med useage. But thanks to all sorts of snafu's with insurance I got held up, and it wasn't until recently. I often wonder if I'd been able to do this all last year if it'd be accademic and I wouldn't be feeling like my doc dropped the ball and set me up. I know he didn't, he didn't realize that most surgeon's had stopped doing the surgery. I would like to think if he'd known he would have not done the trial. I know even if I go to the east coast I'd probably have better luck getting a surgeon what with all the great hospitals back there and teaching schools. But if Australia is where they're currently doing the leading work on treatments for CRPS patients, then that's where I wish I was.
 
Got your email and will definately look into it. Thanks so much!
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