Leads vs. paddles...am I unrealistic here?
 

I've tried to educate myself as much as possible about SCS as I await my implants on Thurs. I had my pre-surgery consult with the nurse practitioner (the dr. was still in surgery, I was told) and she answered my questions. However, this morning as I thought through things, a question came to mind that makes me wonder if I'm going into this with unrealistic expectations :confused:.

The basis of this concern is the fact that I'm getting leads and not paddles. It seems (I say, I could be wrong) that paddles are put in individuals who are/were highly active prior to their injury/accident that required them to get the SCS. The other thread where Mark talks about resuming alpine skiing, mountain biking etc. and the thread where (please forgive me, I forget your name) the guy talks about doing stuff until he's got a real good sweat going which leads me to conclude he's a very active, athletic person, has got me questioning something.

I'm wondering, if the fact that I'm getting leads and not paddles, is an indicator that my dr. doesn't expect me to resume a very active lifestyle (as some of the aforementioned people will be able to do), and that it IS strictly for pain mgmt. and to just give me some quality of life back. I asked the nurse practitioner about leads vs. paddles and she said that my dr. only does leads as paddles requires a neurosurgeon. She said that he's never had leads move on a patient because he has developed a very good technique of making sure that doesn't happen. I, of course, didn't think to ask this question that I'm raising now because, frankly, I hadn't thought it all through.

I was discussing this with my husband and he's going to be happy if I can just resume some sort of social life and go on small road trips. I, on the other hand, would love to be able to do the things I haven't been able to do for the past twenty years....waterski, ride rollercoasters, ride a wave runner, go down a zip line...you know, FUN things, not just being able to run my vacuum again, drive myself to my dr. appts. I hope I'm conveying my thoughts here adequately.

What CAN one do if they ONLY get leads and not paddles? Do leads mean that one is not going to be able to live (or make up for years lost) a life of a regular person? I guess I'm looking for a reality check here. I know that I may have to just wait and see (that's what my husband is saying), but the hope of resuming the fun activities of life is what has had me really excited about getting these SCS's, not just the prospect of getting pain relief.

All thoughts, comments and even emotional outbursts are welcome.:confused:

((((Fiona))))
 

ahhhh, my dear comrade in arms......you do bring up some VERY valid points.

This is coming from a 'lead' person (percutaneous that is, not as in 'leader') :rolleyes:
If you are confident in your doctor and know his techniques to be very reputable, then IMO that's a good sign. My Dr (similar to what yours sounds like) is so good at what he does that he actually crosses the barrier of 'regular confident doctor' over into outright COCKY! And in the beginning of our relationship i was a bit irked by this, but in hindsight it actually brings a sense of 'security' because his track record proves he is certainly worthy of his over-the-top confidence.......:o you may want to put your Peabody Award in a locked case......i wouldn't put it past him to feel HE is worthy of having it.

I asked him questions similar to what you are, and he said that he uses 'anchors' in strategic areas and also knows the 'exact' amount of 'give' in the leads so as not to be too vulnerable to stretching and pulling.....
And sent me on my way saying 'get out of here, go live your life'.

Your body will tell you where to draw the line as far as activities go.
However, there are always the unforeseen unmentionables, such as taking a fall, slipping on ice, etc.....which could render us back to the drawing board.
I have 7 horses. Would LOVE to ride. But I don't see me doing that in the near future (5 months out from surgery) and healed up wonderfully, except that I do have some lower back pain issues which more than likely are a matter of the muscles needing strengthened.
Now, down the road a way, I would like to think I'd be able to ride again, but I would want to make sure I'm on a very well-behaved older mare. I don't want to put myself in any higher of a risk bracket.....but anything can happen....with or without horseback riding in the mix.
I also enjoyed riding dirtbikes with my teenage boys (yeah, go ahead and laugh at the visual - a 40-something mom on a dirtbike) But here also, I'm putting that one on the backburner as well.

I'm curious to find out what the 'very good technique' your doctor uses per what the nurse told you. Ask him point blank. Ask him if he uses anchors. Ask about the 'give' allowance..... Let him know your concerns and make damn sure he gives you answers. Make sure he's talking to your eyeballs and not leafing thru your chart and whatnot.

I don't advocate one way or another on what approach is better. It basically boils down to the doctor/patient/SCS Rep communication.

I've heard some people say they were told they'd never ride again.
I've also heard that horseback riding is the best way to strengthen lower back muscles because it doesn't require bending.
Now when I say 'horseback riding'......I'm thinking in terms of riding blissfully along a prairie.....not barrel racing or bronco competing.
And yes, what if a snake lurks in the grass and makes my horse spook?
Well, that's one out of 1,549 scenerios that could possibly happen, just as easily as I could slip on a pebble on my way into a bingo parlor.....

We're a Godfearing Faithfilled bunch of ButtBuzz Prayer Warriors. :Viking:
Go with what your heart desires and have good communication with doc.

But at the same time, if you've got any red flags lurking somewhere within, don't ignore those.
Ask, pester, inquire, confirm, question everything until you feel satisfied you know what's goin on....... our Drs get paid VERY well for implanting these units...soooooo :Poke:

God Bless
:hug:

Active person here
 

My doctor said I'm the most active person he has ever treated, and he has to constantly remind himself that I am older than him. He knows I did weight training and serious mountain biking, and that I wanted to continue to do so. He also said I could mountain bike on the last day of my trial implant, and I did.

I had my implant almost three weeks ago. Both my doctor and SCS rep said I could resume activities at eight weeks. Until I found this site a few days ago I had never heard of the lead vs. paddle distinction. According to what people here are saying I have the lead type. However, the Medtronic website seems to use the word paddle differently than is used here. I just emailed my Medtronic rep to ask for an explanation. I'll let you know when he gets back to me.

I felt really confident my doctor knew what he was doing and he understood my goals. But after he made his diagnosis and treatment plan he sent me to Stanford U., where two other doctors both said he was one of the best at this.

Rae: I'll be certain to bring those points up about "what" exactly his technique is to secure the leads.

Wherewolf: I'd be very interested in hearing what your rep. has to say re. leads vs. paddles. It really encourages me to hear that someone as active as you also got the leads. Makes me feel better about being able to resume an active life again. I may not be able to do rollercoasters again but would like to know that this is going to give me more than just the ability to run the vacuum more or do more laundry:rolleyes:

Very inspiring!
 

Fiona - yes! That would be great for you to pass on this info regarding the techniques your Dr uses.....it'll certainly help our forum learn and be more enlightened! :)

And thank you Wherewolf, please share what your Rep says to your inquiry.

I think perhaps there is a bit of missing link in the explanation of 'leads' vs 'paddles'.....so maybe Wherewolf could get a clear 'quote' on what his Rep says......

We ALL have 'leads'......the leads are what connect to the battery charge unit (IPG unit).......the difference is HOW the leads were placed.....
Percutaneous leads - placed under the skin using needle via flouroscope (xray). This type of procedure is simple enough for a regular pain management doctor and/or anesthesiologist who've been trained to do it.
whereas
The 'Paddle' lead placement (via 'Laminectomy) is more involved, as it requires a small piece of bone to be cut from the spine to insert the paddles. It requires a Neurosurgeon to do this.

Depending on where the lead placement is within the dorsal column to target the pain, some leads have more electrodes than others and the electrodes are what the Reps can 'tweek' within the programs to give us several options of where the stimulation reaches.....
...something to that effect......
Maybe Wherewolf can give us a more clear account straight from the horses mouth :)

But, yes we ALL have 'leads'.

here's a good link
 

I came across this website, which if you scroll on down, gives some good info. on leads vs. paddles etc.

http://www.nationalpainfoundation.or...e-technologies

So, it seems the question is does one's dr. put in "percutaenous leads" or "paddle leads".

Excellent Website!
 

Fiona that is a VERY informative website!!
I'm gonna see if we can get that put in the 'stickies' at the top of the forum!

Right on! :cool:

My reply would be similar to Rae's post here. Including the "cocky" doc who is at the top of his game that I love. My doc is sooo good, I had faith in him giving me the best, up-to-date procedure; which was the leads with some leeway anchored in. Been over a year, moved in weird positions and stretches (have 2 young boys :wink:) and I personally never felt nor felt nervous that my leads would disconnect. The only area I'm subconsciously aware of is the battery implants (and I have 2). Unfortunately, I can only give my opinion on the leads, as I'm not experienced nor educated as to the difference with the paddles.

You are smart to do your homework. And with that, I'm sure you will end up knowing they way to go for you.

Best of Luck :hug: Vanna

From my SCS rep today
 

From my SCS rep today:

"Yes, paddle leads tend not to migrate as often as percutaneous leads, however they still can migrate. Paddle leads also require a laminotomy (removing a small piece of bone from the vertabrae) to be placed, this is a more invasive procedure than percutaneous leads and is not fully reversible since you are permanently taking out bone, whereas percutaneous leads are fully reversible.

There are pros and cons to both. Depending on the neuroanatomy of one's back and energy use, sometimes it is better to implant perc leads, other times it's better to implant paddle leads. A doctor's past experience and technique can also play a role. Some doctors see better outcomes with perc leads, some see better outcomes with paddle leads.

In your case, I believe it was more appropriate to implant perc leads because there was nothing in your epidural space to impede the perc leads from reaching the appropriate destination and you were getting great stimulation during your trial. Moreover, it is minimally invasive compared to a laminotomy procedure and your neuroanatomy did not require a paddle lead to be placed. If your future activities cause the leads to move you can either have them moved back or choose to have a paddle lead place at that time."

Thanks for that info. from your rep. Helps put my mind at ease...if you can go back to doing the rigorous athletic things you're used to doing, then what I want to do should be just fine :D:D

Paddles here
 

Reckon I am odd one out, having paddles, but then, they knew going in I was active and would want to resume. Also, there was over caution on the part of all of us to just go for the mostest in my case. So, yep, laminectomy at T8 for insertion of paddles. It hurt post surgically, but then, show me one that doesn't. Movement would be possible, if I were to go alpine skiing much too soon, for instance and have a fall. So, caution served here and physical therapy starts Wednesday in the torture chamber.

Go for it Fiona! You have a great doc and all will be well!!
Prayers,
Mark56:)

'Odd one out'
 

Nah, you are not 'odd' at all, other than your overall wonderful charasmatic, caring personality, despite the pain you've endured and are still rising above some challenging scenerios with your loyal commitment to the welfare of your fellow man's wellbeing. :)
The world needs more folks of your character. :grouphug:

There are quite a few here who've had the laminectomy.....
Sadly, several folks seem to drift away.........I SO appreciate the ones who are commited to sticking around, even just for the sake of newcomers needing feedback.....

I hope the PT goes ok......hoping you'll share it on your thread.
Ohhh i certainly would recommend the wonderful bonified therapy pool at our 'Wellness Center' here in Toto-Land.......
It's oh soo lovely.

Quite a Drive
 

Well....... having a pool a scant five minutes away here in Coors land, I'lll opt for it, especially since that drive to somewhere out there over the rainbow for your pool in Toto land would pain me quite a bit. And Gee, I do believe I'll stick around for the therapy, the what comes next, the lobotomy which could all be chronicled in the newly renamed and oh so much more appropriately named Boston Sci thread courtesy of YOU, you so helpful Kansan you!!

:hug:z,
Mark56 :)

take the short cut!
 

Ok, I know you mentioned you have these laying around --->> http://dl6.glitter-graphics.net/pub/...chkydkm1xr.gif so there's no need for the long drive....plus you are geographically compatible with the logistics of Newton's Law of Gravity, ....sooo.....depending on the slope you chose to make your grand entrance here into the flatlands.....http://dl5.glitter-graphics.net/pub/...d67b2hufkc.gif........it really wouldn't take THAT much out of your busy schedule to make the leap.........
......actually......after i dug deeper into my left pocket and found THIS visual ---> http://dl6.glitter-graphics.net/pub/...qyhs7ds4l0.gif...... you maybe better just go to your local pub, mate~ :o
Oh well, it was a nice thought while it lasted.... :cool:

How did you find that picture of my falling?
 

How in the world did you find that picture of my last fall? No, seriously, I used to pride myself in those many days down the slope when I would watch OTHERS lend grace to the concept of Newtonian physics as demonstrated by flying then falling organic life forms. We can look sort of funny sometimes, too! Gee, you should see me on a dance floor..... har har...... no, I did used to know that pretty well and Cleo and I went to dances all over to shake a leg.

Mark56:winky:

Its interesting to hear the debate bout leads V paddles. I wasnt aware of the paddles. I have the leads, 2 in my lower back. I can only imagine that having the paddles put in would have been quite painful post surgery, as having the leads certainly is, but hopefully worth it all.

Also were you all asleep while having your SCS implanted? I wasnt!!!!:eek: which I must admit at first I thought 'oh how am I going to survive'....however, they did give me some 'light' sedation and lots and lots of local anaestetic (apologies bout spelling:)). So it was relatively pain free.....of what I can remember. Amazing even though I was awake and was aware of my surroundings and could tell my Consultant where I had the 'feeling' once he switched on the leads, for the life of me I cant remember a lot else of those 3 hours in surgery!!!!! weird, or maybe for the best:o

Tell me everyone how long post surgery are you all? My back problem started out as pains in both legs one morning, with my backing 'clicking' something in the evening, and from there as they say was downhill ever since........can I ask what happened to you all?:)


Jackie:grouphug:

So many Good Questions!!
 

Jackie, you and I seem so similar!

The 'Twilight Daze' was fun wasn't it! To somebody completely unfamiliar with this procedure, the description sounds absolutely creepy I'm sure!
I know it was for ME when I first was presented with this option from my doctor 2 yrs ago.......that's why I drug my feet before having this done!
I thought certainly my condition would somehow 'go away'.........nope....wasn't happnin`

From what you've described, we are pretty much a mirror image of our procedures.

In a nutshell, i have peripheral neuropathy in both legs stemming from a burning sensation that started in both knees almost 6 years ago.
Horrible HORRIBLE burning!!
There are so many factors involved that could be possible culprits.....
This is why I bounce around from this forum to the Peripheral Neuropathy and RSD forums here at NT.....
Several here are testimonials of the Trigeminal Neuralgia Forum as well.

Here are a couple of little secrets I have found useful in 'getting to know' our other friends here at NT...

Anytime you want to see Neurotalk from a broad spectrum...just click on the huge 'Neurotalk' logo at the top (Left side) of the screen and it will bring up all the forums here....also there is a 'forum jump' down at the bottom of the page (right side).....

If you want to know more info about a particular member here, such as what brought them here, just click on their avatar and a dropdown box will give you several options, one of which says "see other posts by this person"...click on that. Then I scroll down to the very first couple of posts made by the member and it will usually be them introducing themselves and explaining what brought them here.

Also, at the top of the page you'll see a 'member list'.....click on that and it'll help you in finding someone.

Oh! and another neat little 'trick' is to be able to use the 'search' feature at the top of the page. By using this, you can type in a certain 'term' or name of a medication, etc and it will bring up posts of discussion regarding your inquiry.....
....so many neat things about this place! Wait til we have another 'chatroom' party! OH how FUN! The chat lounge is at the very top of the page......
endless i tell you. :) I can get completely lost in time while on here!

I'm 5 months out from my surgery, so I still feel rather 'new' and am unable to give much regarding longterm testimony.......
As a matter of fact, I believe I'm still in what has been termed 'The Honeymoon Phase'....... :o.

Learnin as we go........we're like one big happy family here! :)
'Pain' is the common bond that brings us all together

:grouphug::grouphug:

You are so COOL about pointing us in right directions
 

You see, Jackie, there is this wonderful guide who directed me through the nuances of how to learn NT with minimal frustration. She stayed by my side saying that I would catch on...... despite my obvious challenges:D. That blessing to us all by way of pushing for the creation of this SCS/Pain Pump subforum is none other than RRae, aka Rae. Rae has been my guide, and she is issuing so many tips for your use of NT that she just keeps on the warm welcome side of this universe. Yea Rae.

Nah, there was never any debate about what to put in me, it was always going to be paddles in the minds of my docs, maybe because I am a patient who needed more coverage, maybe because I was known to be an athlete who would get back to it, maybe because no one wanted to have to do this again. Sure there was a laminectomy involved, but I have been cut on so many times, it is becoming old hat [a hat I want to throw away]. It did hurt just like major back surgery I have had because it was just that. But, the healing began, and now six weeks.... well, more, out, the surgical sites are not too uncomfortable. So, I just happen to have something different equipment wise than some others, maybe even more so a part of the Borg Collective, gosh, who knows?

I am recovering though, and glad for it.

One who also wants to be active again,
Mark56:)

Thank you so much Rae
 

If I get lost on NT is purely my own fault, because Rae you are terrific with the info and directions:hug: Im addicted already!! lol

Awe Shucks you guys!
 

:Blush2:
You keep talkin me up like this, my head will swell too big to get out the door!

This forum wouldn't be what it is without all the wonderful folks who have joined aboard and shared :Demonstration:
But THANK you! A good boost of confidence does wonders for a broken ego! :Head-Spin:

Now Since When?
 

Since When did your ego get broken? Surely not here! Can your stim be adjusted to handle it?

Whaddya think?
Mark56:hug:

Precisely! ~
 

.....it's the button on the back of the controller.....it says 'auto eject'
:p

Bumping this up!
 

This thread is an EXCELLENT one on the topic of paddles/leads.....

It's good to resurrect some of these older threads! They are FULL of good stuff!

Hope this helps Twinmom!

Update
 

I haven't visited here in a while. But I'm now about seven months into my SCS implant. I mountain bike twice a week, averaging one six hour and one three hour ride per week, with 2,000 to 5,000 ft. of climbing. Three rides per week were too much. I have fallen off my bike dozens of times with no problems. So far I have not gone over the handlebars like I occasionally used to. That would probably spell trouble.

The SCS is not as effective while riding since my back is hunched a bit, which reduces the stimulation. But it certainly makes enough difference while not riding to justify the procedure. I have also gone back to my usual one hour weight workouts 3-4 times per week. I'm just careful about how much I bend my back.

Love it Wherewolf
 

Have a new mountain bike, and looking forward to giving it a go. I am still told to be careful, however. Been riding streets and such.

Thank you very much for your post and returning to give us a Hi, Sierra Nevada Mountain style,
Mark56:)

Mountain Bikers!!
 

WOW! There probably is NO way I could get Wherewolf to believe me that HE crossed my mind when I typed a post earlier mentioning these 'active' fellas that have passed thru! :cool: HONEST! As I was typing that post....in the back of my mind I was thinking how cool it would be to hear an update!

I should know the answer to this question Wolf, if you're still here....
refresh my memory......did you get the laminectomy/paddles?
If not, then you've got some incredible anchors holding in your leads if they are only percutaneous.
You are ONE active fella!
I bet when you get home from riding and are able to just kick back and relax....that tingling stimulation just sooths you to the bone, yes?

When I've had a hectic day....I love to be able to just relax and feel that soothing sensation.....such a needed reward compared to that horrible burning/stabbing wretched pain!

Thank you so much for the update!
What a great treat for us!

Rae
:hug:

....and Mark! a new bike for you! You will become 'ONE' with the mountain......:cool: am i starting to sound like Jim Morrison?
far out man

No paddles
 

No paddles for me.

So glad to hear Wherewolf that you are up and out and soooo active. Its great to read how far you have come since you received your SCS....and long may it continue

Jackie :)

Thanks!
 

My SCS allows me to stand in the shower, something that really used to bother me, especially after a bike ride.

I really wish that I would have found this board earlier, especially this thread.

I had the trial back in August of 2010. During the trial, I had really one day of good coverage because the leads kept migrating. I was seen daily during the trial because the coverage was sketchy at times.

Because of improvement the one day brought, my doctor recommended going ahead with the implant. It was my understanding that since they knew of the migration problem, that they were going to do a surgical lead placement where no paddle was installed, but the leads were fixed to the spinal column somehow instead of just being "free-floating". In Sept of 2010, I had the implant. However, it was not what I was expecting and turned out to be a total nightmare. The leads migrated, I had the chest wall sensations which was like a heart attack. I also had a problem with sensations in the wrong area, abdomen and surprise "jolts" that almost caused me to fall. I had uncontrollable muscle spasms, it also literally jolted me up off the examining table.

At that time, it was decided and discussed that surgical leads should be placed. My battery had also flipped and was sticking out (this started immediately after the surgery), and wasn't a concern to my doctor until my Medtronic rep and myself was unable to communicate with the device.

In Dec of 2010, the paddle was implanted, as well as the battery moved. I was told that with the paddle that there would be no migration, that the paddle was a more controlled, direct method. So far, I have found this not to be the case with me. Also, my RSD symptoms have increased and "moved" I am now suffering in my back, shoulders, arms and fingers. The swelling is still so great, that wearing clothes other then my pjs and my bras is torture. I hate going out or having people over because of the discomfort.

I would suggest anyone that is considering the paddle or just "free-floating" leads really research this. I also had concerns about allergic reactions, a I have a metal allergy. I did have the testing done, but I still question some of the materials. I also expressed concerns about having some of the boney part of my spine being cut away to attach the paddle as my ortho knee surgeon noted that my bones at the time removed my screws were extremely soft. The only answer I really got from my doctors was that it is a very small part and that I would be fine.

Well, currently, I'm not. I'm doing what they say, not bending, twisting, etc. Not lifting anything heavy and taking my meds as directed. I guess I see what tomorrow's injection and appointment brings.

Again, research and ask a lot of questions!

So sad Patti
 

That your situation has been through multiple iterations of treatment and that migration and battery problems have plagued you; and, here I have been glad of my paddles which have not experienced migration and, so I am told, were secured very well. Just wish I knew what and whether to offer more solace than you have now by way of continuing to work with your docs and rep.

One thing I do know is that we all care here and would readily reach out to provide help as we each have experienced different approaches and situations.

Caring,
Mark56:grouphug:

Hi guys. Saw the doctor yesterday for another set of blocks. So far, I just seem to hurt more. Had a bad skin reaction to the Clonidine patches, plus found out that in addition to "helping" with the pain, it lowered my blood pressure to a hundred and something over 44. Needless to say, no more clonidine patches.

The doctor and I discussed removal of my stim, as it is apparent I can't utilize it. I can still only use it while sitting completely still and even then I get chest wall stim and it jumps all over. Definitely not what it is suppose to do. He and I agreed we would wait to remove it, every surgery I have had since the accident has resulted in RSD problems. I am super tired of this. I have such a horrific headache (probably due to the lowered blood pressure) and I've been up since 4:30 after not getting much sleep. I am also tired of the cold - I want warm weather. I NEED warm weather. Also, my daughter's goat is driving me crazy - she is due to kid any day now and is being a pain. Poor kid is running out to the barn every couple of hours to check her. I try and make it out at least once a day so I can check her over as best I can. It's hard though, and I usually just tell her or hubby what to feel for (checking her legs for swelling, udder for signs of mastitis, and her ligaments).

We need lots of prayer here!!
 

Hey everyone!!! Send up several for Patti!!! This is an awful result to having been through all of hte surgery to implant and then have this inappropriate arcing of signal. Any decision now to head for another surgery has to be agonizing, so Patti, you are definitely in prayers here!!

Prayin,
Mark56:smileypray::hug:z

So sorry to learn of all of your disappointments!
 

Hi Pattie,

I'm so sorry to learn about all of your disappointments with your SCS because I have been so satisfied with mine. I have an ANS St. Jude unit with dual paddle leads.

I sure pray you get some relief really soon.

Take care,

Rhonda

Patti....
 

Thank you for this update :hug:
But oh MY what you've BEEN thru! How scary that your BP went that low!

Warmer weather is on the way - hurry up April!!

I'm sending out my prayers as well and please know we're wishing the best for you......I can certainly understand why you wouldn't want to rush in to getting another surgery......I was really hoping they could land on some program settings that would be right for you.....
or even if they had to move a lead a bit if it's aggravating a nerve or something. It's so sad to know that you've been thru all of this and having to throw in the towel.

Caring Always
Rae
:hug::grouphug::hug:

Patti Im so sorry to read your last post...how awful for you indeed.

I too will pray that you will come to a satisfactory end with all this and somehow they can help with your pain rather than have to put you through anymore surgery!!

take care

Jackie :)

Thanks guys - it really has gotten pretty sad around here. I am waiting for a call back from the Cleveland Clinic. They have told me they have to call and verify coverage from the auto insurance and then it is up to the doctors whether or not they want to see me. There's a good chance they won't according to a woman I spoke with because I didn't have the implant done at their clinic. I hope she is wrong.

I just wanted to leave you a hug Patti. :hug: :hug: