Stimulator Trial

If your considering a SCS implant and or your doctor has recommended one for you a trial is planned first.  I thought it would be appropriate to tell you a little about what it is like.  I wrote about it on May 14th as part of my history.  I'd like to give you a little more information.


To start, my experience was by now means pleasant.  Mr. R. still can't believe that I say that the trial was worse than the actually surgery implant.  Now when I say that, what I mean is the first 36 hours of post surgery was tough and uncomfortable.  After that is was possible to get comfortable.  Sleeping was not one of them but not everyone will have their battery place in the buttock like mine.  I only took an extra over my "normal" dose of pain medicine for the first 2 days then I was ok.  During the trial I had awful muscle spasms.  No warning of this.  In the blog I've mentioned "Chronic Stimulation" she mentions she has the same experience.  So much so she decides to do it all over again some months later.  Brave one she was.   Like me, she was hurting so much she didn't feel she had a true feeling of if would provide relief or not.  The second time she has it in for longer .  5 days I believe.


So you go in the dreaded ice cold room, again on the table to expose your back side.  You can feel them cleaning off your back and then the stick for the local to numb you up.  A small stick is made in two areas and the leads are place in through a tiny tube and then when they are in place they take the needle/tube out and you have these two wires hanging from your back.  The two wires connect into a plastic piece and then into the trial stimulator.  They discuss with you before getting you off of the table where you are feeling stimulation and then tape everything in place on your back.  By no means are you perfectly stable.  You really have to be careful not to jerk the things right out.  If you do, guess what?  Its over.  You have one in place to play with.  Not comfortable to sleep with.  Made me really nervous.


Within hours of getting home the spasms started.  Not anything pain medicine would help.  I just kept thinking, how in the heck will I sleep.  The first night I was so scared to death of ripping them right out of my back I didn't even use it.  By the time morning came I really just wanted the darn thing out it hurt so bad.  I didn't even feel my "normal" back pain.  Only this new misery they added on.  By mid day Saturday, no better but I was running the stimulator and trying to do what they asked of you.  Things that typically make your back hurt to see if this helped relieve the pain. I couldn't feel my back.  Crazy I know.  I'd never experienced pain in my upper back.


I had communicated with Mr. R over the week end about how uncomfortable I was and he was confidant it would ease up within the next 12 hours.  By Sunday, (it was placed on Friday) I was really depressed about the entire process.  Mr. R was really bothered by the fact that I was so up set and he got in touch with my doctor to get approval to leave another day and have me meet with his co-worker, he was not available.  This was done on Monday.  I was just starting to get some relief but it was still pretty uncomfortable.  I remember the drive there.  We worked for an hour and I just couldn't take it any longer and went home.  Another miserable drive.  Still no coverage where I needed it!  Total bummer.  I just thought this was just not an option for me.  I was crying waiting on Tuesday in waiting for my doctor to come in and remove the leads.  


This process my dear readers is the easiest of anything I've ever had done.  Was I nervous about it?  Absolutely!  And every other persons testimony I read said the same thing.  They were nervous about it but it was the easiest thing they'd ever had done.  Matter of fact taking the tape off is the hard part.  That hurt!  He told me to take a deep breath and on my exhale out the came.  Like spaghetti noodles.  He showed them to me.  Those are the darn things that have been making me miserable?  It was so fast, and I never felt a thing.


We talked about my experience and he wanted me to think positive because it wasn't a total wash.  He wanted me to see the partner in his clinic who actually does the surgery because they was a new lead, a paddle lead they were using with better coverage.  Not something you'd place for a trial.  He said it was so new they just starting using in November.  The paddle had been around for sometime but this one was larger and had more electrodes on it.  I was open to discussing it.  What choice did I have.  I did ask doc why couldn't he allow the trial to last longer so you'd have a better chance to tell how it was working.  And he said it doesn't like to go past 3 days due to the risk of infection of being in that long without closure.  I told him another doctor I saw for second opinion left for 7 days but didn't take out if it was helping you they just went ahead and closed the sites and implanted your battery.  He's heard of that but not the way he likes to do it.  Doctor preference.  He said why use the larger leads for permanent placement if it was not for you.  Larger scars and chance for scar tissue if they remove.  I have scars from my trial anyway.  No biggie though.  Made sense to me.  He also noted that a small percent of patients have muscle spasms like I did.  I'm always in that small precent.


When I saw the doctor for discussing the permanent implant we talked about if I decided to do it he'd give me some muscle relaxers in case I have trouble with any muscle spasms, some patients do he said.  Oh, I did.  I was miserable I told him.  What do you know, after surgery, not once did I experience any spasms in my upper back like at the trial.  The biggest challenge I had was getting comfortable with all the bandages around the battery area making it even larger and more uncomfortable than it was.  After removing at one week it was a little better but it took until now at four weeks to really be a big difference. 


In the end if your doctor only does a 3 day trial and you don't think that is long enough ask him about another day or two to see what he says.  I definitely could have used another 2 days at least.  Some doctors go 5 and some as long as 7.  Bottom line you have to be comfortable with your choice in how long you deal with this thing attached to you at all times.  No bathing!  Sponge bath only.  Nothing can get wet.  See another doctor if you don't like the answers you get.


Good luck if your deciding.  Going to the sites of the different stimulators are very helpful too.  I found a video on line where the entire thing was on video but wouldn't recommend it.  Remember it is a different experience for every one. 


GNA and wishing all pain free days 

2 days and whose counting :-(

I was awake until 2 am this morning so needless to say I got a slow and late start this morning on my to do list.  First up therapy with my social worker.  I really like her a lot.  We did decided if I need to talk to her before I can make a trip in she is willing to do a phone secession with me.  Other wise I'll go in as soon as I feel well enough to go into town and sit with her for an hour.  I do a lot of pacing during that hour.  My appointment was a 12 and as soon as closed the door to leave I realized I'd locked my self out.  Thank goodness I had my purse.  I have a spare key for car but not for house.  I need to take care of that.  At least I was able to leave an keep my appointment.  My husband was in the field today and just so happen he was heading back to office and passing my way.  He dropped of a key for me in the back yard.  


I went to bank, CVS, Walgreens and Wal Mart.  Then I had to rest for an hour when I got home.  About 4 I kicked into overdrive and made my self wash 3 loads of clothes and vacuum and steam my floors.  Dusting and then I quit.  At least something will feel ok about leaving here Wednesday morning.  My house will be clean even though it killed me to get it done.  Tomorrow I'll go to baby C's house and play with her.  We have a good time.  Its tough for me some time but I'm very much appreciated and C makes me smile and forget about what else is going on in the world and even though the pain in there and nagging me I don't dwell on it was much as when I'm home.  3 things left on the list for when I get in after 5 tomorrow.   That will be a challenge because when I get home form babysitting I usually don;t do much of anything.  Hit the heating pad for sure.


From the time of last June up until March of this year I have been in the process of getting approved for a trail test.  I saw the SW that was recommended until he felt I was ready to go back and see the Psychologist and be retested.  That was in February I believe.  Everything went well and he sent a letter to my pain management doctor stating i was ready for the trial.  I scheduled it for the first Friday in April.  It was done at the surgery center where all the other injections and nerve blogs and such had been done.  They know me over there now.  I've become a regular.  Not that I'm bragging.  Hope I never see that place again after Wednesday.  So it was same ol routine.  We get there. Pay, sign a bunch of papers and wait.  Wait while your thirsty, hungry and hurting like hell without your pain meds.  I did however take my anxiety medicine because I don't know if I would have went through without it.  After we went back, they starting reading all the same ol same ol stuff and reviewing my meds.  Doc came by to see me and answer any questions.  Then the rep from St. Jude ( he'll be R) came by to see if I wanted to talk to him about anything.  He explained he would be in surgery room and working with me after on some settings to try at home to help see if this was going to lessen my pain.  


We went into that freezing room where they warn you NOT TO TOUCH anything on the table.  They always have to help me up on that high table.  The little stool just don't cut it when your back dosen't work right.  Then the lovely part comes where they stuff this pillow under your hips so your butt is stuck up in the air for all to see.  I really don't care anymore I'm used to it.  I have gotten to know all of them but now I have a new visitor in the room.  R.  He is there so that when the leads are placed they can talk to me and find out where I'm feeling them and work with me if its not in the right place.  Your pretty alert through the entire process..  After they were in and I was in the "step down" area to be watched R sat with me and worked some programs with me.  After they had me up and dressed.  Remember durning trial nothing is implanted the leads are coming out of your back and kind of swing around to the side.  The have a piece on the end that sticks into the stimulator remote for you to operate what program you want and the intenseness of it.  By the time the starting getting me up and he was still trying to work with me I couldn't sit in the chair I was to uncomfortable.  The numbness was starting to wear off and I could fell spasms in my back starting.  ( I will have something to take for that this time).  Over all it wasn't to bad.  It was uncomfortable sleeping if you wanted the stimulator on because of the wires hanging by your side.  YOu have to cautious.  If you pull one out you loose that connection. 




By Saturday morning my upper back was hurting pretty bad.  Soreness and spasms.  I couldn't lay down, I couldn't sit in chair because I couldn't stand anything touching my back.  the first night was difficult but it got better and the next night then the next.  I had the leads removed on Turesday.  A different rep from St. Jude had met me in at the PM clinic on Monday am to see it she could get some different programs working for me to try out the next 24 hours.  We just could not reach the spot that hurt me the worst.
I felt it every where, my legs, down to my feet, my stomach.  If it would just wrap around my stomach where it is to the back life would be grand.  We just couldn't reach that area.  The good news is that at least the sensation was pleasant.  Some people do not like the way it feels so it is not comforting to them.


On Tuesday doc said he wanted me to see the doctor that does the implant and talk with him about my chances of reducing pain more with a different kind of lead.  The ones on each side were small and round and the one he will put in the middle space called a  paddle lead. It sends the signals down instead of out in a circle like the long spaghetti like leads.  They will put me to sleep, make the first incision and place the leads and next the paddle down the middle.  They will then wake me and R will work with me to see where I am feeling the stimulation.  Hopefully this time we'll have a winner.  It didn't quite reach the area of my back I needed last time.  When we're fished with that back out I go for the cut in the booty to place the battery and sew me up there also.  Beyond that I don't know what else will take place. I guess thats what you'll find out on Thursday morning.  I hope those little buggers go in smoothly.  The he said the paddles can give him fits some time.  


D will be with me and B(my daughter) will meet us there so D can go to work for a couple of hours.  He has to go out of town the next morning so my mom will be staying with me Wednesday evening until Friday when D gets back home.  


I better call it a night because I have to get up at 5;30 and its 12:00.  I know I can't sleep with my back hurting and D next to me snoring like a train.  I just can't sleep through noise.  Sorry can't do it.  I'm making a move to another room.  I need a few hours to get through tomorrow.


I'll say hello tomorrow night, short and sweet then I'm not sure what to expect.  I hope to update Wednesday night but thats up to God now isn't it.  Thanks for sticking around.  Please feel free after, if you are making decisions about this to ask any questions.  Another persons blog I read was actually at a year before everything was just right but she was happy she finally got there and it changed her life.  She was then saying she was glad she did it.  Before with all the trials of getting stimulation right she wasn't so sure.


Good night everyone.  Sweet Dreams everywhere.