SCS trial scheduled for Dec 14th

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CoralToe
Regular Member


Date Joined Oct 2011
Total Posts : 24
   Posted 12/5/2011 7:11 PM (GMT -6)   
Hi everyone,

I finally have my SCS trial scheduled - for the afternoon of Dec 14th. Up until now I've always thought to myself this is no big deal.....but now I'm starting to freak out a bit. I know its an easy procedure, but anything that has even the potential to cause increased pain (ie at the site of the wires sticking out of my back) scares the crap out of me. I also am trying so hard not to get my hopes up - in case it doesn't work - which is hard since I'm trying to psych myself up for going through with the procedure....Hope that makes sense. Anyways, if anyone has some extra good vibes to send my way (no pun intended) please feel free!

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 12/5/2011 10:23 PM (GMT -6)   
There are many many postings on those here at Healing well...look thru
the past posts and read up, also google all the information you can get, it's
your right to be informed and to know all thats going to go on with this,
and you can decline...I don't know if I'd opt for this, but I hope it can
give you relief...many well wishes to you and Prayers... many good vibes to you...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

CoralToe
Regular Member


Date Joined Oct 2011
Total Posts : 24
   Posted 12/6/2011 1:57 AM (GMT -6)   
Hi Chartreux, and thanks for your comments. I have researched, and researched as much on scs as I think I logically can. Before joining this site I spent months lurking/reading scs posts etc. At this point I have reached the stage of "what do I have to lose...its just a trial." I always get anxious before surgeries/procedures....just need some positive thoughts thrown my direction.

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 12/6/2011 2:12 AM (GMT -6)   
Hi Heather - sending those positive vibes your way as requested.

Just realised that you asked me a question on your intro thread...

It's taken a lot of messing about, but my stim does reach my feet and toes, yes. I have one perc lead and one called a micro-plate, which is a kind of miniature paddle placed in the same way as a perc. It's mid-way between the two - has greater stability than a perc lead and also gives a greater area of coverage, but also obviously less invasive to implant than a paddle lead because it doesn't need any removal or disruption of bone. Do you know what sort of unit your doctor will be using?

All the best, and please let us know how you get on :)

Laura

Post Edited (CRPSpatient) : 12/6/2011 12:18:37 AM (GMT-7)


CoralToe
Regular Member


Date Joined Oct 2011
Total Posts : 24
   Posted 12/6/2011 8:32 PM (GMT -6)   
For the trial I know it will be perc leads, and a Boston Scientific precision plus unit (as an off question....do they do paddle lead trials?) Once we give the trial a go - I am going to broach the perc-lead vs paddle-lead issue with my pain doc. From what I gather, she can do the permanent unit with the perc leads, but to do the paddles I would have to go through a neurosurgeon. I've never heard of a micro-plate - will have to check in to that.

My biggest concern is lead migration, and I'm young....so if this works I would love to be able to be more active - which in turn increases the chances for a migration. I do know that my doc is inserting the leads in a retrograde fashion - in her experience with patients with toe/foot nerve pain issues, she seems to have good success doing it this way, so keeping my fingers crossed :)

Anyways, I'll post back after here after trial day....only a week away!

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 12/7/2011 3:57 AM (GMT -6)   
I've never actually thought about how my leads were inserted, but I'm thinking that mine must have been done the same way - most of my scarring is over about L4, but I know the tip of one of my leads is around T12/L1... I'm having major problems with it at the moment after falling on my bum and squashing my T12 a few months ago.

Micro-plate is what my tech and doctor called them. I've done a bit of a search for you - what they are is a single column paddle lead that's put in the same way as a perc.

http://www.sjmneuropro.com/Products/Intl/1Column-Paddle-Leads.aspx
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

CoralToe
Regular Member


Date Joined Oct 2011
Total Posts : 24
   Posted 12/7/2011 11:43 AM (GMT -6)   
Thanks so much for the link - that looks like something that would be interesting to discuss with my pain doc. I think she only does Boston Scientific - and from what I can tell they only have the traditional perc vs paddle set up. Did you do a trial with this type of lead - or did you do the perc leads for a trial?

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 12/7/2011 6:06 PM (GMT -6)   
I trialled with perc leads. Actually, my original stim trial only used a single lead.

My stim is for CRPS, which I think you know from the other discussion? When I had mine implanted, it was only my right leg affected and the doctor decided only to put in a single lead (also, unfortunately, a battery unit that could only accomodate a single lead).

I'd changed doctors after that one more or less dumped me in the 'too hard basket' - partly because I've also got quite bad dystonia/contracture complications and I needed someone who knew how to manage them, partly because I just couldn't get in touch with him when I needed him. about 18 months after my stim was implanted, the CRPS started spreading to my left leg. Sympathetic blocks didn't work, I had a bad reaction to ketamine because I was having some trouble with my heart and when he suggested replacing the battery and putting in a second lead to cover my left leg, I was quite keen.

I had great coverage for a few days but I also have stomach issues and vomit a lot - and the vomiting shifted the lead right out of place. We gave my back a few months to settle down, then he went back in about three months later and replaced the lead- still a perc at this stage. That was in late 2008. Because of my stomach problems, I lost an enormous amount of weight - I ended up in hospital in late '09 weighing less than 60lb - and because of that everything shifted again and the newer lead came out of place. It was causing me a lot of pain even with the stim turned off because it was irritating all the surrounding tissues, but I just wasn't well enough to justify elective surgery.

When I started discussing it with my technician, it was him who told me about this new lead type - he felt it might be better for me given I'd had so much trouble getting the traditional perc to stay in place. We'd also had a lot of trouble getting solid coverage - I'd get a patch here, a patch there, and he hoped that I'd have something more uniform with this new sort. Right on too - Like I said, I can't use it at the moment until we sort out what is going on with my compression fractures, but now that he's got a good program for me it's like wearing a pair of stockings that give a very gentle, rolling massage :)
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

CoralToe
Regular Member


Date Joined Oct 2011
Total Posts : 24
   Posted 12/8/2011 12:46 AM (GMT -6)   
Wow - thanks for sharing all of that...you've really been through the ringer. I am glad that you do have something that now works - even if it is unusable at the moment. I hope you can get the compression fractures under control soon. And thanks for the info on that lead type - it definately sounds like something that would be interesting to at least discuss with my doc!

CoralToe
Regular Member


Date Joined Oct 2011
Total Posts : 24
   Posted 12/15/2011 1:40 PM (GMT -6)   
Just wanted to post an update, and get some feedback from all of you SCS users out there....

I had my trial Boston Scientific stim put in yesterday, and for the most part it went as I had expected. Once the surgery itself was done, I spent some time with the SCS rep to put together some programs to try out. When we did the programming, I was in a slightly reclined position - and in that position everything seemed to work beautifully. However, today I have tried all of the programs in more "normal" positions - ie sitting more upright, laying down in bed, and standing/walking....and I am not getting anywhere near the coverage that I had in recovery. From what I gather reading past SCS posts, this is not super unusual - and so today I will be meeting with the rep to get some programs made that do cover my foot when sitting/standing/laying down. The one thing I can say, is that my back hurts much more than I thought it would....so hopefully that will calm down in a day or two.

So, for now, as I'm not getting great coverage, I can't really say if it is working for me or not....but hopefully once I have better programs, I will be in a better position to make that determination :)

-Heather

Betsey Ross
Veteran Member


Date Joined Mar 2011
Total Posts : 1056
   Posted 12/16/2011 8:12 AM (GMT -6)   
Heather....Keep in touch with the rep. Hopefully he can give you additional programs that will work for you over the weekend.

I am praying for you that you find the relief you need so much.

Have a Happy Holiday
Betsey
crushed lower knee and vertical fx of tibia/external fixator placed/plates and screws and tried to place big pieces of cartiledge under knee cap/tremendous pain in affected leg continously without improving/allergic to metal in left leg/leg isnt straight/ metal removed in July//then total knee replacement/straighten out leg/more phsyxical therapy/take oxycontin,flexeril,cymbalta,vicadin for BT

CoralToe
Regular Member


Date Joined Oct 2011
Total Posts : 24
   Posted 12/16/2011 4:23 PM (GMT -6)   
Thanks Betsey! I had my appt with the rep at noon yesterday. We made a program with me laying down, sitting upright in a chair, and standing - just so I had everything covered. The "sitting" program seems to work for all positions - just need to increase or decrease the intensity depending on what I'm doing. The rep also "unlocked" the ability to play with the frequency (rate of the pulse). Apparently they don't normally let patients do that, but did for me (at least that's what they told me - not sure if thats really the case). So, between playing with the intensity and the frequency, I have found just the right settings!

This whole experience so far has almost been surreal...I feel like I'm dreaming - I had pretty much forgotten what it was like to not hurt :) I'm going to try and push it as hard as I can for the next few days. I want to try to see if I can walk around the mall, or a large store without hurting. Its been 2 years since I've been able to do that!

Anyway - so far so good. My back is still really sore, but I can take that for now. Will post more later - hopefully the pain relief will continue!

-Heather

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 12/16/2011 5:52 PM (GMT -6)   
Heather, that's great news! I think that's probably true - I can play with the intensity on mine, and which areas are being stimulated, but I can't play with the pulse frequency.

All the best with the rest of your trial :)

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

CoralToe
Regular Member


Date Joined Oct 2011
Total Posts : 24
   Posted 12/16/2011 11:52 PM (GMT -6)   
Laura - when you get back to using your stim, you should see if you can get the frequency unlocked....it made a huge difference for me. The reason they did it was that I wanted more programs stored then I think the trial device can store (it seems to only be able to store 4 programs). With it unlocked, I can get much more specific coverage depending on what I'm doing...for example, all of my problems are in my foot, and one of the programs had great foot coverage, but also hit my shin to knee area - which I found not so pleasant. By keeping the intensity the same, and turning the frequency down just slighty - the non-specific area went away, and the all that was left was the great coverage of my foot. The different frequencies give completely different sensations too - I feel like a whole world was unlocked by this one little setting!

Anyway, I made it through an entire day at work today, then spent 45 min walking around the grocery store. My husband could not believe his eyes. He has had to do all of the shopping for so long, that to see me walking around, not limping and not in pain - I feel as if this is somehow not real.

Now I'm thinking forward to a permanent implant - and hope that everything can be positioned correctly again when the time comes. In the meantime, I am going to try and enjoy these next few days - it is going to be really hard to say goodby to the trial stim on Tues :(
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