Revision #2
 

I officially have my second revision for my thoracic stim scheduled for March 14th. At least I was prepared that this was a likely possibility ahead of time so I can't say I was surprised.

The thing is that the pain in my back has been more to the left lately, in between the leads incision and the battery pack. My rep that I was working with today had the idea that she thinks it has something to do with the battery pack itself, and my doctor agrees that it's a good possibility.

So here's the plan: (1) They'll check to see if any of the connections with the wires to the battery pack are loose. Something may have become unscrewed a little bit, and this could be causing the pain. If so, all they have to do is tighten it and it will be very simple. (2) If that's not the problem, they'll move the leads up, waking me up and seeing if they can get rid of the pain while still getting the coverage I need. He said something about moving them up where they're tighter in the epidural space. But I might lose coverage in my ankle this way. (3) If this doesn't work, the final step would be to implant a whole new device. The good thing is that Boston Scientific has a brand new device that has 16 points on the leads instead of 8, which would give me a lot more options for good coverage so that wouldn't be problem. But it would be starting at square one again.

So since there is a good plan in place, I'm optimistic that some level of it will help me. No one still has heard of anything like this. But it's clear at this point the problem is not one that can be fixed by programming.

In the meantime, he prescribed me a muscle relaxer just in case that could do some good to ease the back pain when I have the stim on. So I'm crossing my fingers it can help.

I haven't heard the new 16 point leads mentioned here yet, and I know Mark was just talking about new devices that will probably be coming out. The rep said they put it in 2 patients so far at my hospital and both have had great results.

It is what it is, and I'll get through it, hopefully for the better. My first revision was a blessing with the good that it did, so maybe this one will be the same.

Hi yellow. Sorry you are having to go through another revision, but it sounds like there is a good plan in place and I am sure it will all work out for you. Hope the muscle relaxer helps you in the meantime.

I have a question for you - do you have percutaneous or paddle leads in the thoracic stim? I ask because I originally had percutaneous leads and one migrated and was causing awful pain in my back. The doctor thought that it was stimulating the muscles, tendons, etc. because it was in a different position. That is when they decided to remove them and replace with a paddle lead. It was much better, although I do still feel some pain/spasms there from both stims, which means I have to keep them both lower than I want to, but it is much better with the paddle lead :) Did you guys discuss switching to a paddle lead? Because I already had leads in place, they did not have to do a laminectomy. They were able to use the same path of the other leads.

Oh, wanna hear something funny? I am in pre-op prepping for the revision surgery and my husband asks my doctor how many surgeries he has done like this (with this type of lead) or is she the guinea pig? Dr laughed and said, yeah, "she is the guinea pig". Then the rep says that I am the first in the state to get leads like this. Oh boy! Good thing I trusted my doctor :eek: The reps did tell me that my dr had just gone through the extra training for this surgery...Like I wasn't nervous enough, I could've knocked my husband out for this one :)

Anyway, keep us posted on how things go. You are in my prayers.
Nanc
:hug:

Wow Nanc!
 

A guinea pig, eh? Oh my! What a thing to find out at this stage of the game! :rolleyes: I bet your hubby wasn't exactly expecting that response, was he!

Thanks for your description of the migrated lead. That makes it easier to comprehend regarding the muscles and tendons getting 'zapped'. That's exactly what was happening to me with my lead that came completely dislodged. Even tho it was not connected to the dura anymore, it still had 'juice' zapping at whatever was where the electrodes were lying around.
I totally believe that's why the muscles back there continue to spasm when the unit is on.

WELL, Yellow :hug: you're no stranger to this, that's fer sure!
I'm glad they have good plans laid out. I hope it won't get as far as plan #3. I'm gonna pin my hopes on PLAN #1. Easy fix.
BUT, if it does go to plan 3, then hey, you'll end up with a record-setting 16-point leads! And they've already performed this on 2 other patients, so you won't be THE official guinea pig!

Man, I swear. So many people have got these units nowadays, it's like second nature to the docs by now. :rolleyes:

As always,
You are in my prayers!

Rae
:grouphug:

Nah.....
 

WAIT one darn minute Nanc, I thought I lived in the wild west, where cows have the run of main street in some of our towns and such..... You live near the SEAT OF POWER..... I am surprised the power doesn't just ooze over on y'all. So what is that about you being the FIRST in the state? It wasn't April 1 was it???????????????????????????????????????????????? ?

Oh, well, I am going to go into the back yard and bonk my head on a tree....
like in the cartoons,
Yup.:hug::grouphug:

Yellow!!!!
 

At least we know you are Yellow and strong, and definitely NOT yella.... yeah. We will be holding you and your Dox in our prayers that revision goes well and produces excellent results all 'round.

Prayin,:hug::grouphug:

Nanc, I didn't know that paddle leads could ever be put in without a laminectomy. That's really interesting! But how scared you must have been hearing that right before you went into surgery! Thankfully everything turned out well, and hopefully your husband learned never to ask a question like that again ;) No, my doctor hasn't discussed the paddle leads with me. I wonder if it would make a difference for me? At this point if the leads need to be replaced, which hopefully they won't, I think the new 16 point leads are a good option for me since there will be double the options to get the right coverage where I need it. It's really good to know, though, that if I do end up getting the paddle leads at any point that I wouldn't need to have the laminectomy.

The more I have time to process it, the more I feel that this surgery is going to help me and I feel good about it. It's hard when no one can give you any kind of guarantee (since the x-rays don't show anything obvious), but I'm glad there are several options to try if the first doesn't work. My first revision went well and I have a good feeling this one will too :)

I'm most worried about my schedule, which is a bit insane these Spring months due to graduate school and a whole bunch of field experience hours that need to be completed. But I know I need to just place it all in God's hands and He will help me through it.

Haha!Yeah, the rep told my husband and then me later that I was the first in the state to get this type of paddle lead, not sure what makes it so special or different...I didn't ask :) No, it wasn't April Fools Day :)

:hug:

Yes, I gave my husband major grief for doing that to me. It was bad enough that they were having major problems getting the IV in and because of those delays, they let my husband come back to see me and the dr was in there...it was chaos! Then my husband starts these questions for the doctor, scared the crap out of me!!

The rep told me that they were concerned at first about the paddle lead going in and then it slid right into position...he said they were high-fiving each other in there. I get really good coverage from the one paddle, although I can't remember how many points are on it. I know that they have different paddle sizes. If I needed it, I could get great stimulation in my mid-section...back and abdomen, areas but at this time I do not. My rep said that so many of her patients would kill for the kind of coverage I get :) I am happy to have the paddle lead vs. the two percutaneous leads, they tend to migrate easier and now I don't need to worry about that part of it so much.

I am sure you will do fine with the procedure, recovery and your hectic schedule. You are such a strong person, I admire you!

All the best,
Nanc
:hug:

AGREED! Nanc is right on, Yellow. You've come thru the other procedures in the past with flying colors (even when things didn't go quite as planned) AND you manage to juggle school at the same time!

You are SUPER-woman in my book! :D

The Award with the Kudos
 

:winner_first_h4h:
The
:winner_first_h4h:
Dedicated Student
:winner_first_h4h:
In spite of pain
:winner_first_h4h:
Award

Do we get to have a party now?:Head-Spin::Head-Spin::Head-Spin:

Thanks so much to all of you, it means a lot :grouphug: I am determined, sometimes to a fault. But I have my spring break from classes not the week immediately after the surgery but the one after, so that'll allow me some more time with recovery without feeling guilty, which is a good thing :) And I'm trying to line up as many of my hours as I can before the date. The great thing is that working with kids is always such a joy and blessing, so it never truly feels like "work".

It was funny at the end of my appointment Tuesday that my doctor asked me if I still get the pain in my back when I'm laying on my stomach, because I had tested that just the day before for that reason! I thought that before I agree to any surgery, I better make sure I feel it on my stomach or it'll be pointless. Maybe I have been through this a bit too many times if I'm thinking like that... :p

I had a revision last month. The battery replaced and leads moved up. Working great, not even a reprogramming yet. Now, if I could get rid of the narcotics without withdrawal issues life would be almost perfect! Anyway, leads higher up is much better!

Prunes
 

Yep NJ, prunes. Did I say................. prunes?:o

my dear njbackpain
as someone who worked hard for my
sobriety 20 plus years i am in awe
at you all
my decision not to have any more surgery
is a decisions that was long and hard
my doctor in the end recommended
a pain pump and this is how i found
these wonderful true real persons
who are experiencing success with SCS makes
me fell so good to know there are
these stories
still not enough for me
not to many stories about
pain pump and that entails
continuing drugs NO THANKS
my success rate was 75% mechanical
and the hope to be taken off the hard core drugs
i'm on (not so lucly in MY case)
however in your case
i pray for you coming off your meds
i pray your withdrawal symptoms
passes quickly as i am a slave to mine
extremely upset after all my years of
mental clarity i am in a fog by the end
of the day
so with all that said
i hope and pray your tapering
down on the meds you don't suffer
those terrible horrible withdrawal
it be replaced with a good feeling
in your tummy and thru your body
the Lord lift some if not all the pain
in that too
you have been very helpful
in your story
i wish the pros who make these
powerful drugs we are on like myself
the fact is i am a heroin synthetic addict along
in the sense we all understand and
with all the other meds is depressing
and wondered why "they" haven't figured out
the formula to help us in our withdrawals
makes me nuts and because i will have a
long relationship with my pain specialist
does not sit with me well
my surgeries outcome not good
seriously took my life from me
my bliss cooking gone
and so on
my experiences with all the excruciating
test i had to help him with my surgery
was senseless in my outcome
don't ever want to have a disco-gram
or a meylogram or the umteen emg
this lady is done done done
oh and by the way
did i tell you i'm done

God Bless
may he comfort you
as our JESUS CRIST
suffered all forms of
pain not only on a physical
level
a great man

someone who cares
thinking of you as you taper

I'm glad it's going so well for you! It's funny because in my first revision they moved the leads down, and that was the answer, so just the opposite. Now they think moving them up a little (not as high as they were before) might help. Needless to say I'm a little wary about that option actually working. But who knows? Based on everyone's stories here alone we can see just how differently these devices react in different people's bodies. It's really pretty interesting!

my friend
is there any thing you can share
or did this go right over me head
ha ha
but seriously
are you serious mark?

that someone who cares


by the way i love prunes
try them after being in the
freezer

I found out today that I got the pre-approval from insurance for revision/replacement!! I've been having to go back and forth with insurance over procedures that I had in November and December, so I was really worried that that would impact the approval for this surgery. It's such a relief to know everything's a go. Only 9 more days and hopefully I'll have 2 correctly working SCSs again! :)

Wondrous
 

Thus we will pray you fare well in and through all of this from the pre-op physical through the last invoice insurance must pay. May all manner of things be well.:hug:

Nj yours moved up and work great . Mine moved down and is awesome lol. Not a single reprogram here either. The trial for cervical was a success, so I shall have two also!

Can't wait!!


TK

:D

Well I'm recovering in my hospital bed after what appears to be a successful surgery. They ended up going with the whole new unit after testing out the old one in surgery and there not being any difference. I'm ok with it, though. The recovery is longer but it should save me from more problems in the future because the leads have 16 points vs 8, which gives a whole lot more options for programming. My rep said my doctor's implanted about 15 of these units now.

The new remote is super fancy! I can't believe how different it is from the old Boston Scientific remotes (which I still have for my cervical SCS- so no worry about confusing remotes anymore). It's white and has a color display screen and more buttons as well. I have to figure out how to post a picture to show you all.

So far seems so good with the coverage, but I haven't had it on much yet because I've been having a bad time with nausea, and any stim is just aggravating that. My rep will be back in the morning to give me more programs. I'm in what's called extended recovery, which means not technically admitted but "kept for observation" overnight. So the room is not a traditional hospital room, but I'm at least in a quiet area which should help tonight.

I just got home a little while ago. I'm in a lot of pain, but now after I've been through a cervical implant, I realize how nice it is to have both of my incisions in my lower back. And the nausea's all better now, which is such relief.

I forgot to mention yesterday that this new unit is supposed to charge a lot quicker and battery is supposed to last longer in between charging. I certainly hope so, because that would be great! This remote also has to be charged by plugging it in to an outlet rather than using batteries. The unit is also able to have up to 16 programs, and I have no idea how anyone would need that many. I'm sticking with 4 for now.

I took a picture of the remote. As you can see, it's not any smaller (a little thinner but much longer), but it looks so much nicer!

http://i.imgur.com/YrBcVvJ.jpg?2

I feel awful because it's the last Sunday School class this Sunday with the little ones I teach, but I don't think that there's any way I'm going to be able to make it :(

Hiya Yellow
 

Well, you just REST and let the little ones and those who fill your shoes take care of other things. Sorry you will miss their last class if you are resting, BUT, gotta take care to heal..... just gotta.

Nice looking remote. Huh. 16 programs..... will it operate your garage door? TV? DVD player? or satellite/cable? I mean after all, if it has 16 functions, maybe it can be a universal :D :Head-Spin:

OK, sorry to digress..... but someone has to, right? :thud:

Prayin for complete healing, :smileypray: :hug:

Mark, when my doctor came to my room he asked "How do you like your new phone?" :p It is a much more sleek design, which is nice.

I know the best decision for me is to rest, and I will, but I just hate having to not be there for the little ones, especially for their last class. Hopefully they can find someone capable to fill in at the last minute, though.

Your remote is much cooler than mine. Mine are the same. I had to label them lol. The cervical stem rocks, the thoracics tem rocks, and I'm just trying to walk due to PEs last time. I have been sleeping a ton!

Mine used to be the same too. I put a piece of tape on one of them so that I could tell which one I was grabbing without having to look at it. But now I don't have that problem anymore! It even comes with a rubbery cover like for a cellphone to protect it.

I'm glad you're getting lots of rest, TK! Did you stay overnight in the hospital or go home the same day? I'm really looking forward to sleeping in my own bed tonight!

TK & Yellow, glad you both are doing well! So happy to hear this :)

Cool remote Yellow!

someone that cares about her babies inspiring
you have their images in your loving heart and brain
you may want to write them print out tiny cards
and send it out to them

someone that cares

Thanks Eva for your kind words. Sending out cards is a good idea. I have done it in the past and always hear how they enjoy getting mail, so it would be good to do it again.

I'm battling with a lot more nausea and vomiting this evening which is not fun at all. But the first couple days after are always the worst, I know. I also have a large protruding swollen area over my leads incision, so I'm hoping it's just another seroma. Haven't been able to wear my abdominal binder yet which is supposed to help with swelling because it's been aggravating the nausea. But the hardest part's over and it's going to get better from here.

Praying Thus
 

And the Lord will deliver you rest.
Prayin,
Yup :hug:

amen!
With the strength of your
own!
You put one foot
in front of the other
and lord is holding
you up

someone who cares

I'm 5 days out and things are going pretty well. Still a good deal of pain, but I'm starting to see an improvement. I still have a big bump of swelling that curves out over the leads incision (the one that has been opened 3 times now), but the overall swelling has finally started to go down a little bit.

Now that the pain has gone down a little, I've noticed in 2 of the programs so far that I am getting pain in my back. The other 2 seem to be ok, though, so I'm hoping it stays that way. With all of the options for programming with these leads, it shouldn't be a problem. My rep said we'll figure out where those programs are set and then work on reprogramming them. I have my appointment on Thursday.

They sent my old unit for testing, so I'm curious if they have found anything wrong with it.

I went to my doctor's appointment today, and everything went well. Nothing to worry about with my incisions, the swelling has finally gone down more, and no signs of infection. They look pretty gruesome, especially the one that has been opened up 3 times, but it's only been a week. And I can shower now!

My rep showed me how the leads look on the computer program for this device while she was programming, and it's really cool to see how much more technologically advanced it is. Boston Scientific is actually running out of inventory of these, though, so they're not pushing them for all patients right now.

I had to charge my new remote this morning, since this one doesn't run on batteries, but I was happy to see that it only took about 20 minutes to go from one bar to completely charged. I still haven't had to charge my new unit yet. Not in any hurry to do it, but I am curious to see if it really does charge faster and hold the charge longer.

Thanks for the update Yellow. So glad to hear you are doing well!

Gotta love technology, right!?!

Hi Yellow!
 

Sounds like things are coming right along! You've certainly got the 'cadillac' of remotes! :cool:
I'm glad you're doing well.
It'll be interesting to see what they find out about your old unit!

Rae
:grouphug:

I'm doing okay at I think 9 or 10 days later. My 4 tunnel incisions hurt more than my neck now. My hip is swollen. I should digress and say I lost 45-50 pounds and weigh little. Tunneling took a long time. I haven't charged new yet. Its been gloomy and cold here so I knew today would suck pain wise lol. I charged old. The only thing weird is feeling both at the same time. Not complaining for sure!!!! I killed my ipad in the hospital. I always manage to do something weird there! Anyway, just checking in!
GLAD to see my surgery partner is doing well!!
TK
:hug:
:grouphug:

I hope you're still doing well, TK!

I'm getting pain in my back in two of my programs again. But at long as it's not happening with all programs, that's what matters. And I'm SO happy that the battery life of this device lasts much longer!

I still have some pain and swelling a little over two weeks out, but it's getting better. My leads incision still looks pretty gruesome, but I'm not surprised considering all the times it's been opened up. And the swelling over it is concentrated in a bulging area, so hopefully that'll break up soon.

Next week I get back to classes and my internship, so I hope I'll be ready. I'm most worried about all the driving that's involved, since sitting in a car has been painful for awhile after my past surgeries.

I got a survey in the mail from BS, and if I fill it out I get a new skin for my new remote in the color of my choice. I'm excited! :p Now I just have to decide on a color...