SCS & Pain Pumps For spinal cord stimulator (SCS) and pain pump discussions.

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Old 04-24-2014, 08:34 PM #1
Parker214 Parker214 is offline
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Heart Migrated leads one week after implant

I ahead my boston scientific system implanted last Tuesday. My doctor does not turn on the device for at least a week to allow for swelling to go down. I went in for my one week post op appointment yesterday to find out that my leads were no longer in the epidural space at all. He said I will need further surgery next week to have the paddle lead with laminectomy. Has this happened to any of you? How would you compare the 2 procedures. I went back to work today, still in quite a bit of discomfort. I have no pto left at work and my doctor just said it will be quite a bit longer recovery. I'm feeling so down since I got this news yesterday. I would love to hear from anyone with similar experiences. I am new here and am very excited to hear your stories. Thanks in advance....
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Old 04-24-2014, 11:38 PM #2
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Quote:
Originally Posted by Parker214 View Post
I ahead my boston scientific system implanted last Tuesday. My doctor does not turn on the device for at least a week to allow for swelling to go down. I went in for my one week post op appointment yesterday to find out that my leads were no longer in the epidural space at all. He said I will need further surgery next week to have the paddle lead with laminectomy. Has this happened to any of you? How would you compare the 2 procedures. I went back to work today, still in quite a bit of discomfort. I have no pto left at work and my doctor just said it will be quite a bit longer recovery. I'm feeling so down since I got this news yesterday. I would love to hear from anyone with similar experiences. I am new here and am very excited to hear your stories. Thanks in advance....
Sorry I don't have any answers as I am just starting my trial next week. But I wondered did anyone ever tell you there was a choice between lead wires and paddles? I had never heard of paddles until I started reading these posts.
Hope someone else has some answers for you.
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Old 04-25-2014, 05:44 AM #3
Parker214 Parker214 is offline
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Originally Posted by revrosefairy View Post
Sorry I don't have any answers as I am just starting my trial next week. But I wondered did anyone ever tell you there was a choice between lead wires and paddles? I had never heard of paddles until I started reading these posts.
Hope someone else has some answers for you.
It was not a choice unfortunately. My doc only does the paddle as a last resort bc of how invasive it is. :-(
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Old 04-25-2014, 06:57 AM #4
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Default answers are sure to come

dear friends
i am here to say hello
and am sorry to know two more persons
who live in pain
i hope i will one day have the
strength and faith to go ahead myself
i am reserved in my decision on ever opening
me up again
while my success
first did not on my screwed up fusion
plate 6 screws
second surgery plate
and screws new donor bone and cage
a mess both times
to then have both breast off
because i found a lump recouping
from second screwed up surgery
only to be told by my oncologist
go back to breast surgeon
only to be told i have what is called a double bubble
my point being
my surgeons failed me as a human
ignored my every cry out of pain i am in
still

you are so brave
and sharing your
experience strength and hope here
i will surely be helpful to someone
i know your pain
oh to well

be well
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someone who cares
eva

Last edited by eva5667faliure; 04-25-2014 at 06:59 AM. Reason: edit
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Old 04-25-2014, 08:25 PM #5
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Default Migrated Leads

Parker214 - I am unfortunately in the same boat you are in. I have a Medtronic's unit that was implanted on Christmas Eve, so I've had it for four months now. For the first month I got great coverage - 60-75% pain relief. Then it all started to change. Over the next two months I had many reprogramming sessions with two different reps, and I kept telling them that something wasn't right - my pain relief was decreasing, and my pain level was increasing. I met with my pain management doctor twice over those two months, and told him the same thing as well. At the urging of my reps, I called Medtronic's and discussed my issues with them. Finally everyone agreed that I needed to go back to my neurosurgeon for X-rays to see what was going on.

The result? My leads have definitely migrated, and I am now set to have the paddle/laminectomy surgery on June 11 (travel plans at the end of May prevent me from having it sooner). Like you, my doctor wanted to go with the least invasive surgery first, even though I asked him about the paddles/laminectomy from the very beginning.

I'm sorry that I can't give you any insight into having this surgery after having the first one, but I will be very interested to follow your experience, as perhaps your experience can be helpful - and hopefully encouraging - to me!

Now what I can tell you is that I did have a lumbar laminectomy in 2010 (not related to a spinal cord stimulator). Out of all the surgeries I have had - and I'm including the cervical fusion I had last year - the laminectomy was, by far, the most difficult recovery for me. It was tough. I'm sure that it's different for everyone, but I'm going into my paddle/laminectomy surgery with that info tucked in my back pocket, so that hopefully I will be a little more prepared this time around, at least in terms of my expectations.

Please do keep us posted with your surgery and recovery - thinking good thoughts for you!

=Becky
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Old 05-08-2014, 12:36 AM #6
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Smile Hello Parker & revrosefairy!

WELCOME to the both of you!!
A bit 'belated' for this welcome, but nonetheless it's obvious that you've found a totally GREAT bunch of caring folks here!

There's a ton of testimonials here to help give you a good and realistic idea of how things can go with the SCS. And always someone here to answer any question you might have, or - like many of us, just come here to blow off a vent if need be. Hey it feels great and it keeps me from kicking my dog.

In case you haven't seen the 'Sticky Section', which is at the upper part of the forum. You'll see it after you exit this dialogue. When you see all the different threads people have started, you'll see the 'Stickies' up top. Do check it out cuz there's so much good information, FAQ's, etc.

The following link is a Must-read very detailed description of the SCS, surgery, recovery, and it goes into great detail regarding how the leads are placed compliments of the Mayfield Clinic:

http://www.mayfieldclinic.com/PE-STIM.htm#.U2sZL40o7IV



It's great to have you with us!
Rae
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Old 04-30-2014, 08:54 AM #7
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Hi parker214 I myself have not had any migration. But I do have a surgical paddle implanted it was installed during my trial and left in place as I had chosen to go forward with the implant after the end of my trial. and I continue to get great relief from it I wish more doctors would consider the paddle a more viable option then they do right now. One of our members posted by Mark56 posted something I lived by after my implant its called B.L.A.S.T it helps you remember the do's & don'ts after implant surgery. I must say also they people here on this site have all been a great help to me during my trial and afterwards they are very knowledgeable and willing to lend a hand from their past experience so that others may prosper and not suffer as some of them have. I hope that you able to lead a better life after you surgery.
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Old 04-30-2014, 08:58 AM #8
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Default Parker214 here is BLAST I copied and pasted it for you !

I came up with BLAST after the implant surgery when the post op nurse was trying to tell me to remember BLT and add no stretching to it. I told her that was not good enough because it involved too many mental steps. Instead, I coined BLAST, incorporating stretching into the acronym thusly:

1. B DO NOT BEND - This means do not bend over at the waist to pick anything up from the floor [ask for help, squat, or use a "grabber" device which can be purchased at any popular pharmacy]. If it falls, do not BEND over to pick it up. DO NOT BEND to load/unload the washer or dryer or dishwasher. DO NOT BEND to pick up a remote control or the telephone. Place such things at your reach to minimize the temptation to bend. DO NOT BEND to wash your hair, as this will stress those tenuous leads emplaced in your spine..... pretend no one will see you until the trial is over and forget vanity for a little while as you learn whether SCS will work for you.

You may bend somewhat to sit in a car, on a chair or sofa at home, on the toilet to do necessary things, as this form of bending did not seem to interfere with the process when I was in the trial. Get a Grabber such as you may find at a name brand pharmacy for reaching things you should neither bend nor stretch to retrieve while in trial.

2. L DO NOT LIFT - This means anything which puts strain on you AT ALL. Your toothbrush can be lifted [but do not bend to spit, use a tray or practice long distance spitting - this is why hospitals usually issue those plastic bent trays for inpatients], and you can certainly lift a forkful of food to feed yourself while lifting a cup of beverage to wash it down [do not heft a 2 litre stein of your favorite brew, as this will cause strain]. I am reminded of instructions after eye procedures - LIFT NOTHING. The idea is if you lift, some strain will occur and those muscles in your spine will react potentially affecting your trial.

3. DO NOT...... A...... wait a minute, this is an acronym, and vowels have no place.

4. S DO NOT STRETCH which means nothing which would cause you to lift your arms above your eyes. Wear loose fitting clothing which can be buttoned up the front so you need not lift your arms to put on a favorite polo or blouse. Let your hair go for a few days, as lifting your arms to brush it out or comb it puts them above your eyes, I guarantee it. DO NOT STRETCH to reach up for a favorite blouse or shirt to wear during your trial period; let someone else do it or forget it until the trial is concluded. DO NOT STRETCH to place or retrieve a cup/glass/bowl/plate on or from a shelf..... these movements involve raising those arms too high.

Think about avoiding fastening rear fastened bras as they involve stretching. If you will be hanging around your home during the trial.... who will know? If you must go out, maybe your spouse or significant other can assist. Simple things like tying your shoes also involve stretching - wear house slippers or slip on shoes as I did.

5. T DO NOT TWIST- and this can be something as simple as twisting around if someone calls your name [ we all do this ], twisting in your car seat to fasten the seatbelt [ we do this too ]. My spouse helped fasten my seatbelts during this time. I could not drive anyway. That oh so subtle twist which may occur as you finish in the restroom is probably OK [anyway, I had no problem with it].

LOGROLL - Getting into or arising from bed. [This assumes the covers have been pulled back already]
a. Walk up to the bed and back up to it until your legs touch it.
b. Placing your arms out to your side, palms flat and ready to touch the bed as you descend, slowly use your strong legs to descend to a seating position on the bed, touching the bed to either side with your hands for balance.
c. Using your arm on the pillow side of your body, begin to slowly lever yourself down toward the bed so your head may rest upon your pillow while simultaneously raising your legs up from that seated position to align them on the bed as you lie upon your side.
d. Once you have succeeded in lying down, line your legs up to your comfortable position [ mine is with a pillow between the knees for a neutral spine position].
You are down. Rest. You may be fine in such a position as I was after each spine surgery once the aggravation of straining touchy muscles was subsided.

Arising from bed, the actual logroll feature of the above process.
i. Align your body and legs parallel to the edge of the bed nearest to you while facing that edge of the bed. If you had a pillow between your knees for sleep, remove it first.
ii. Using the arm nearest to the mattress, press down with the palm of the hand of that arm upon the mattress, levering yourself up into a seated position as you simultaneously swing your legs over the side of the bed into a seated position.
iii. Take a breath or two and gather your wits. Breathe out, and using your leg and abdominal muscles arise from the seated position into a standing position. Take it easy in this process. If you do not require the assistance of a cane or walker, do not grab onto something or a person as doing so will engage muscles you do not necessarily wish to flex in the process. I had to do this on my own, as I found if someone tried to "help" me up it HURT like thunder and risked harming my trial lead placement.
iv. Upon gaining the standing position, take stock of yourself and move carefully until you are assured of full control of your body in the standing or walking position.

BATHING - During the trial I DID NOT. A sponge bath or washcloth to make the ripe odor go away was one thing, but risking moistening the trial implant area would risk infection and other stuff, so I stayed away from it.

SITTING in a chair or the car - at first I used a flat pillow to protect the back as I would recline against the seat. This issue resolved the longer the trial lasted.

WALKING - Well, this is one thing Doc wanted me to try so as to learn whether SCS would be viable in multiple environmental uses. I did not RUN or JOG, just walked since the leads are just barely sutured into place and then taped like heck to hold them as firmly as possible.


Any of this which sounds wonky should be checked out with your Doc or Recovery Nurse as I am neither.... just a veteran of spine surgery too many times.
Again this from one of our members Mark56 which I hope is doing well also !
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Old 05-02-2014, 06:12 PM #9
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Default Post op 1 day

Hi everyone. I had the paddle lead put in yesterday and I am in a terrible Amount of pain. Much more than I expected I must say. It is very difficult to get in and out of bed. I feel like I have been run over by a bus. My meds are doubled right now and my doctor added a muscle relaxer which I am just now getting filled. I read the blast page and it is very helpful. I cannot seem to find a good way out of bed though. It hurts to lift my arms so having someone try and help me up is pointless. I hope this gets better soon. I will update in a few days
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Old 05-02-2014, 08:59 PM #10
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Default I so understand

Oh Parker,
Reading your pain----I am so sorry...reading it took me back to my first few days post op. I too felt like you and slept where I dropped onto the bed...yes run over by a bus says it!!

My advice...yes the BLAST...

STAY AHEAD of the pain....don't miss or skip meds at this point

call your doc and call your rep....start to document your immense pain...get stronger meds if you feel you need them.

Get your nutrition and water...I do hope you have help.

Forget about how you look; as for help if you can get it.

I was never told there was an option....I actually thought and wonder why they did not do leads as my injury is maybe eight inches from my battery.

MessyMark...there is such a need for a patient liaison...I do hope you are that.

HB
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