Happy Valentines Day **Start SCS Trial today
 

Hello Everyone, just catching up on all the threads and seeing how everyone is doing. I hae been AWOL for a while without consistant internet access and winter, etc. Today is Valentines day and I am off to start my SCS trial today @ 2:00pm. I am excited and nervouse and have been up all night letting my brain chatter me crazy. My biggest fear is that it wont work and that I will be left with no options. I will let everyone know how it goes and am trying my hardest to stay positive.

Good luck Today
 

Good luck today with you trial I hope it goes really well for you. When you can please let us all know how you get on....

Will be thinking of you

Jackie:hug:

And everything goes Pear shaped........splat! I have geared myself up to have this done today and have been anxious and on edge for the entire weekend and splat! Through a whirlpool of confusion they had the rep scheduled to be there at 9am and me scheduled to be there at 2pm so all the anxiety was for nothing. I am rescheduled for 2/23 @ 8:15am. I may do trial w/more than one brand unit as if we proceed with permanent placement I will require paddle leads & neurosurgeon due to all the hardware in & around my spinal column> This trial is Med tronic, also looking at St.Jude......

I'm sooooo sorry for the confusion. I went today to start my trial. The appointment was made 2-10 for today 2-14 the stress and worry almost drove me crazy. My doc chose Boston Scientific and so far I couldn't be happier...okay I could do without the pain from the procedure but the relief so far is beyond amazing.
GOOD LUCK!

Hi Twinmom
 

Praying that all will go well and be well when you get there the next time. I know personally how frustrating it can be to get all worked up to a surgery, arrive, and then be sent home. It stinks. Big time.:Bang-Head:

I know from personal experience that this system works in the proper situation. May your trial be the BEST ever.

:hug:z
Twindad,
Mark56

MK Hi
 

Hoping the best for you on your Boston Sci try. I have it, love it, would kill to keep it [does that give you a good idea how I like it?].

If you have Boston Sci questions, my thread on it is in here somewhere.....
maybe in Rae's left pocket [inside joke on this thread]. Here is the link:

http://neurotalk.psychcentral.com/thread117854.html

Warning, it is a bit long...
Be good to yourself during your trial,
I'll bet you are gonna love it,
:hug:z,
Mark56:grouphug:

Hey Twinmom!
 

It's great to hear from you again!
Geeeeeeze I'm sorry tho about the re-schedule!
If there's a way I could help make you feel less anxious about it, I would love to!......but it's pretty much natural for us to be a bit scared of the 'unknown'....
At least it's good to be reading all these trials that have been shared lately....SO MANY outstanding and exciting testimonies of how folks just can't believe what the SCS is capable of doing!

I'm excited for you. Just try to relax in to it and make it a reality in your mind that this CAN work!

Case-in-Point: MKHolman joins your thread to share a very exciting experience!

We're here for you!
Rae
:hug::grouphug::hug:

Hello MKHolman!
 

Thank you for sharing this!! And WELCOME to this wonderful little world of Bionic Buzzing Buddies! :p

Like Mark56 says, we have SO MUCH to share here!.......
and sorry Mark, :o all I could find in my left pocket this time is
THIS GUY!! --->> http://dl9.glitter-graphics.net/pub/...nemhp4tc96.gif

My PSYCHO- Delic LINT ! :p alas, but Mark DID post the link to his wonderful thread. I highly recommend reading thru it.....

It's good to have you here and we hope you stick around to let us know how the rest of your trial goes.
YES, indeed the first day of the trial is a bit painful and it's best to just lay around and pamper yourself from the procedure........Ice was my best friend where they inserted the trial leads.....
But then the next few days you'll feel much more up to doing things around your house and mess with the settings and 'bond' with it :)

Wishing you the best!
Rae
:grouphug:

Oh no!
 

Twinmon Im sorry to hear you had to reschedule....but at least you have a date which is good....

When I was going for my trial, I was told to be in for 8am....so we went to the hospital with lots of time to spare and were just pulling into the carpark at 7.50am....when my phone rang and it was my CONSULTANT:eek:

He said....oh arent you supposed to be here to have your trial done today,................. I said emmmm yes Im just outside, Im not late though I was told to be here for 8am.. is there a problem!?????!......he said, well you should have been here for 7AM!!!!:eek::eek:

Obviously I was told the wrong time, but luckily he waited for me. He thought he might lose his theatre slot, but thanfully not.....

So these things do happen unfortunately...but chin up and it wont be long til 23rd!!:hug:


Hi MK

Nice to meet you, so glad you found this wonderful site.

Great to hear that your trial is going so well..fantastic news. The uncomfortable feeling and tenderness of the trial will pass but at least you are getting some good results.....well done! :)

Thank you all for the welcome. I'm not real sure how this works but I do know you all have answered most of the questions I had. I am VERY sorry you've all had to deal with this and I'm very thankful that you are willing to share your experiences.
You were right about the procedure pain going away and me bonding with the zapper. We have become the best of friends. The downside is that I'm gonna lose it in about nine hours. Then it's back to the waiting game to see if the insurance will let me have it permanently. I am NOT looking forward to being without it. And I hope it doesn't hurt when they remove the trial zapper. Being without it will be pain enough.

Again...thank you.

So happy that the trial proved successful! I'm pretty sure that if you report getting 50% or more of pain relief, then they will go ahead and schedule you for your permanent.
And no worries! I didn't feel a THING when they pulled out the trial leads!
The only thing felt was when they took off all that tape!!

I hope they schedule you ASAP so that you don't have to wait very long.
Just ask for your pain meds to have during the interim.

Oh please stick around and let us know how this unfolds for you!
I love reading about the excitement it brings when you get that taste of knowing that you can have a quality of life again!

Caring Always
Rae
:grouphug:

A word of caution after the trial...
 

I know I harp on this a lot, but I believe being forewarned is to be...well, you know.

MK Holman: the removal of the trial is pretty uneventful, usually just a tugging feeling and having to put up with the removal of the all the tape...may lose a few hairs here:D

What I do want to caution you about is that several of us, me included, found that after the trial was over our pre-trial pain increased and we literally counted the days until we got our permanent implants. I'm not sure exactly why the pain increased, probably a combination of being pain free for a while and them messing with the nerves when they put the trial in. Make sure you have pain meds. to fall back on and if you do experience increased pain and the pain meds. don't cover it, let your dr. know ASAP. Hopefully you'll get your permanent one in soon as it sounds like the trial was very good for you.

You guys were right on the money. The tape was the worst. I can't even put into words how much I miss the zapper. And you are right about the pain. I'm not sure if it's really worse or that I enjoyed the lack of pain so much that it was a shock to the system to have it back.
My Doc asst. said it may take 2-3 weeks to either get the surgery or to get approved. I'm not sure which. I was busy going back to normal. I can't wait until this is NOT the norm.
If anyone out there is questioning if they should try this or not. I gotta tell you it was worth it. Even if I don't get the permanent zapper I at least had a few really good days.

So glad to hear that the trial was a success.

Im thinking that if the trial was approved and successful then there should be no problem with the permanent one. I know when I was getting mine it was approved from both. I hope now too that you get a date ASAP because as you know the relief you got is amazing and worth it!!..

Good luck

Jackie :)

Keep on top of these guys!
 

I've seen more times than not......unnecessary waiting due to mis-communication between the Dr office secretary and Insurance personnel.
Call your insurance carrier to verify that they've been contacted by your Dr office. Then call your Dr office just to 'check the status' of your procedure.

Operating Rooms can be VERY busy...... (chime in here Pooh!)
Just make sure you've got an actual 'time slot' with YOUR name on it!

Just wanted to throw this out there because I've seen too many times people waiting in frustration and not getting calls returned, etc etc etc....
Be polite and keep in 'good' with everyone....but don't be afraid to be a 'pest' if you feel you aren't getting any clear answers.

Caring
Rae
:hug:

MK
 

May your wait be short, and it was certainly thrilling to know of its great help to you while zapping!

Mark56:grouphug:

Congrats on the success of your trial MK!!! I always enjoy reliving that amazing experience vicariously with/through others.

Wishes for your comfort during the permanent implant waiting period :)

Best of Luck!!! Vanna

Rae is quiet right! OR rooms especially at hospitals that do implants are indeed busy. Even as a nurse I have fallen victim to many SNAFUs on my SCS journey: My 1st very nice well meaning pain doc made promises that could not be kept, however, when she discovered she could not keep these promises, she resorted to not returning phone calls, then when I persisted, the office manager called and basically threated me if I did not quit calling and harrassing the doctor. I pointed out that I was the patient, she has made promises I was not seeking meds and I was a RN. Later found out the "problem" was that the office had submited my info to my previous insurance company that was in their system from several years before, not my current ins, they did have the correct info on file was a "clerical error" However, I was the one who discovered the error by my own multiple phone calls to my ins co who the clinic INSISTED had the info and were holding up the works, was less then 2 weeks to approval once I called the above office manager and pointed to their error. There was never a we are sorry we messed up, just a here is a different doctor who will work better with you. Best thing they ever did 4 me!
:p

I will try to keep on top of both the insurance and the Doc.

I have a strange question...I had a spot on my lower back that I thought was irritated by all the tape and the removal of it. But it turns out that I have a burn from the little computer thingy that the wires plugged into before they plugged into the battery.
Has anyone else had this? PLEASE tell me the permanent one will not burn me.
I didn't realize it was a burn until the Doctor's office was closed so I can't ask them.

Hi Mk

Hmmmm not sure bout the burning thing!!!

I know when I had my trial I had a lead that attached to the programmer, dont actually remember another box!

This is something you need to discuss with your doctor. I first would have though maybe the tape but if you say no then it should be investigated.

The battery and leads are all internal so I cant imagine you would get burning from that.....but go speak with your Dr

Jackie :)

No burn here
 

The Boston Scientific trial I had was completed with the working unit mounted at my waist in a velcro fastened cloth wtih a pouch for the device. I did not experience burning, and the unit did not touch my skin directly.

When I recharge my permanent unit, I do experience a feeling of warmth at the contact point where I mount the recharger over the internal working device. No discomfort is associated with the recharge endeavor, though.

I reckon you will need to ask doc or your rep,
Mark56:grouphug:

Mark just wondered, when you place the charger over you battery, is it covered with anything so that its not skin to charger.

In my unit I have a paddle thingy attached by a wire to the actual charger, this paddle is then inserted into a little pouch made of polyester material I think and then is placed onto a belt and then over the battery. So the actual paddle of the charger never comes in contact with my skin, but I do feel it warm when I take the pouch off the charger......Just wondered if you have anything to put on yours?

I do remember my Rep initially saying that when they first brought out the SCS they had a lot of complaints about the paddle getting warm and patients experiencing some burning issues too....

Just a thought! :)

Not nearly so complicated
 

My charger is about the size and shape of a pony horseshoe [flat on one end and the D shaped]. In the center is a button/light which indicates charge. Once I remove it from its charging cradle, I press the button and a beep is emitted until it senses proximity to my internal unit, then a place it directly on my skin under the waistband of my undies and it holds position until finished. So it is charger direct on skin. They even provide adhesive patches so I could adhere it to my skin, but having tried one, I found it a bother to peel off, so I do it my way [reminds me of a Frank Sinatra song].

Yours sounds a might more complicated with the base unit, wires, a paddle in cloth pouch. Wow. Each manufacturer to their own, true?

Enjoy your "take out."
Mark56:)

Ah I see what you mean.....hmmmmm.....well I can see why you think mine is complicated:D probably sounds more so than it is. I generally have everything left in place , the paddle in pouch attached to belt etc, so I just have to add the charger.....but if it works for you fantastic......:D.......


Ok gonna phone for that food now.....take care Mark:hug:

Jackie:hug:

Jackie, I too have a Medtronic unit. I have told them the belt assemby was defective. Mine is one of their early re-chargers it is supposed to fit into a plastic ring which to hold it in place over my internal unit, the "antenna" is hooked to the charger which is pluged into yet another unit which plugs into the wall. I threw out the belt after the 1st week! Just tuck the "antenna" into my jeans turn on the charger tuck the other end into my back pocket and off I go! It does get rather warmish when I charge it, almost hot. I am not sure they have improved it much by what you describe!
:hug:z

Outdated!!!!
 

hmmmmm Pooh that does sound a bit familiar alright!!

My charger sits constantly plugged into the mains............until its required..then its unplugged from lead.....plugged into the 'antenna''paddle' thingy....then put on my belt and hey presto!!! so yes it does sound similiar!!

So Im guessing that Mark that the 2010 version:D what with him not having any leads or belts:rolleyes:....You go Mark!!

Even though mine was implanted in 2010 it does sound a bit outdated:Dwell as long as it works then Im sure it will be fine too;)

Still waiting to recharge!!!!! its been 8 days now.........will have to ask Dr and Rep tomorrow ...so watch this space!!!

Jackie :)

Watching with anticipation
 

So, is this called Lurking as I watch and wait to learn how your charge lasts?
Watching/Lurking,
Anticipatorily,
Mark56:)

:D :D emmmm dont worry I'll let u know ;)

Charging myself now.
 

Beep, beep, beep, beep, my charging unit cries until at last centered over the stim unit, then I relax back and let it do its recharge thing..... should be about 45 monutes or so.....

Ahhhhhhhh,
Mark56:)

Watch out for yourself or no-one will.
 

Thanks for the advice above. You couldn't have been more right.
I've been calling the insurance and the Docs office once or twice a week. Today when I called the insurance company I found out they received the request. However they said some of the necessary information was missing. According to them the Docs office didn't include my % of relief. They had supposedly contacted them and had yet to hear back. I got the fax # and the reference # and called the Doctor's office myself.
When I called there I had some hoops to jump through and had to explain several times what I had learned. I was told they had submitted it and I would have to wait for them to hear from the insurance peeps. After again explaining what I had been told by the insurance company I gave her the info ( fax # and reference # ) and hoped it would be dealt with. She did call later and say she thought it had been taken care of.

Fingers crossed.

Someone on here had it right when they said...We are the ones with the pain and the need to have things taken care of quickly. You really do have to make sure the left hand knows what the right hand is doing or it will fall through the cracks.

Did I mention I've been waiting for a letter from the insurance company to let me know the trial is covered and still haven't gotten it. I should be patient I've only been told by three people it's been sent three different times.
If we paid them the way they handle correspondence I bet they'd get better at it.

Extremely Thankful
MKHolman

Im so glad that you have taken control of this yourself. If we were to sit back and let these people control everything we would get nowhere.

Im a firm believer in taking action and phoning , emailing, contacting whomever I need to get ahead.

Im surprised you havent even found out if your trial is covered. However, I dont know exactly how your insurers work, but mine, here in Ireland, they have to pre-approve my trial and permanent implant BEFORE they even let the doctors come near me.

I do hope you get all this sorted out sooner rather than later and get your implant done .......YOU NEED IT NOW!!!!.......


Take care

Jackie :)

Good for you!
 

You are ON THE BALL! Keep at it! I can't wait to see how this unfolds for you!
Caring!
Rae
:grouphug:

I haven't been able to update due to having forgotten my password, lost my laptop, my dog ate my homework...seriously I did forget the password.
I got approved and had the permanent implant done on 3-18-11. I LOVE it. I'm still having some pain at the surgical site but other than that it's wonderful.
I want to say THANK YOU to everyone who shared their experiences and wisdom. You definitely:):cool:
helped me be less afraid of the unknown and more hopeful for a good outcome.
I pray that everyone is doing well or soon will be.

Extremely Thankful,
MKHolman

Wow .. Am really pleased MK !!

Glad for the Password retrieval
 

What wonderful news MK!!! Thrilled for you that you currently love your SCS, and I hope and pray for you that it continues to do its job. Mine has been in since 30 June 2010 and I am still feeling blessed and thrilled. Regarding lingering surgical pain.... that tends to abate with time, so strive for patience as the body heals. Everyone is different, and projections are at best statistical guesses. I imagine one day you will awaken and go, "hey, where is that surgical pain?!"

Thrilled for you,
Mark56:hug:ZZ

Such GREAT NEWS!

Thank you so much for the update!!
We see so many people come and go, never to be heard from again and this always brings sadness as I tend to get attached to everyone :o

So THANK YOU for bringing this wonderful news to us....we all 'knew' you would have a great outcome.....but needed to hear it from YOU! :hug:

Maybe you could TATOO your password next to your new buzzing UNIT! :D

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

Tatoo?
 

TATOO????? Do you mean one of those great big colorful bird tatoos with the snappy lookin beak, talons, feathers and all, maybe with a ribbon carried in its talons which reads the information or Curses, Buzzed Again ; o)
Mark56:D