Tuesday, November 10, 2009

Spinal Cord Stimulator Updates and Info

Spinal Cord Stimulation (SCS) is an amazing technology and I learn more and more about it every month that goes by.  It works by blocking pain signals from getting to the brain.   I've had mine installed since January of this year and it has changed my life!  I have the ANS/St. Jude Eon Mini.  My unit can hold up to 20+ programs, but I have been happy with 2 - a daytime program and one for sleep.  They are the same program, but the sleep setting is much lighter.  I keep my unit on 24/7 as the nerve pain breaks through too strongly if I turn it off at night.

This is a photo of my best friend, the remote control!  I put that antenna to the left over my IPG - implanted pulse generator in my upper right buttock, and use the device to the right to turn the unit on and change or stop different programs.  If I am having a surge of pain, for instance, I pull out the remote control and turn the buzzing up or make it stronger to help the pain.

My first exciting bit of news is that  I discovered a new tweak that we can all do on our own.  The photo below shows my remote control, with my previous favorite program displayed (#5).  Do you see that electrode to the right of the number 5?  That is not normally seen.  Once you have your program open, you click on that grey button by my thumb, and it will bring up that electrode on the screen.  You then use the up and down buttons at the top edge of the unit to make that little mark go up or down the electrode.  What this does is give you extra ooomph on your stimulation.    If you've never tried this, I recommend it!  The instructions for this are actually in the booklet that came with the unit, but I had never noticed it before!

Program #5 has been my all-time favorite.  It is a constant buzzing, like "buzzzzzzzzzzzzzzzzzzzzzzz".  However, it must really use a lot of battery, as I was having to charge every 3 days or so.  Most others reported online that they charge no sooner than once a week, and many can go even longer.  I was wondering if something was wrong with my battery (IPG - implanted pulse generator)?  I wasn't really worried about it, but it was a little annoying to have to charge so often.  Here is a photo of my charging belt -

And here is what it looks like on:

I went in and had my rep give me a program that feels more like a jackhammer - BUZZ   BUZZ   BUZZ  BUZZ and I LOVE it!!  The surprise is that even though it feels so much stronger and I would swear it uses more battery than #5, I am now 1 week out from recharging and my battery is totally FULL!  I don't know how long I will be able to go without charging, but it looks like at least 2 weeks?  That is a huge change.

Lesson I learned - just because a program feels strong does not mean it pulls a ton of juice out of the battery.  With #5, I thought if I asked for an even stronger sensation, I would have to charge even more often.  I was wrong!  So I really recommend you keep an accurate log and give your rep specific requests on what you would like.  You never know when you might stumble on a great, strong buzzing without using a lot of your battery!  So now #8 is my Day program and #4 remains my sleep program.  The other programs (1, 2, 3, 6 and 7) will likely be deleted one of these days.  My rep is super careful not to delete anything, even if she is changing a program, she will make a copy and change the copy.  That way, I can always go back to the exact program I did have that was working.  I've heard some reps delete programs, and if the new one doesn't work as well, the patient is stuck trying to figure out how to get their other program(s) back.

When my rep printed out my program information, I had her write down which programs were for what - day, sleep, extra pain, etc.  Should my remote control ever die and a new one needs to be shipped to me, this could speed up the process if she were able to call in the settings.  Otherwise, I would over night my "dead" remote control, the programs would be copied, and my new remote control would be shipped over night to me.

I asked if I could have an extra remote control and learned that we can only have one remote control "married" to our IPG at one time.  So having an extra would be of no use.  This keeps us from going up to another SCS user and copying their programs into our remote controls (something I would never have thought of!  lol).  One day, my remote control appeared to not work, and while I started my lamaze breathing prior to a full melt down (LMBO), my engineer hubby got it working again.  I honestly didn't know what I would have done if that remote control had died.  This is why I decided having an extra one would give me more peace of mind.  Ah well, no such luck!

I still thank God every day for the opportunity to have the SCS in my life, giving me relief from the unrelenting burning nerve pain I would be experiencing without it.  I still have a high level of pain, but the SCS buzzing (like a massage chair on the inside!) really allows me to function mentally and not be shut down and overwhelmed.  The SCS technology is not a cure; it is a wonderful adjuvant therapy for chronic pain sufferers.  And I am one thankful girl!

Have a great day!


1 comment:

  1. That was a really good post. It helped me to make sense of some of the issues with the subject.


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