Friday, July 9, 2010

SCS Love

I need to do a better job of updating with the SCS (spinal cord stimulator) info, as I know I get many visitors who either have an SCS or are contemplating getting one.  This has made SUCH a difference in my life, I must continue to share.  BTW, I have the St. Jude/ANS Eon Mini.   For those new to this, the SCS is implanted in my mid-back and upper buttock, and transmits electrical signals in my spinal canal, working to "block" the screaming nerve signals coming from my hips/legs/feet.  It is not completely blocked and if I did hurt myself, I would feel it.  It is more like a trick in my brain.  Instead of my brain dealing with what it thinks are severed legs, it says to itself - "why are we buzzing/tingling/massaging?"  And while it is busy trying to figure that out, my pain signals don't get through like they used to.

Here is a page with info and an informative newscast video.

This is considered "last resort" treatment.  If this had not worked or if it stops working in the future, my only option will be an implanted pain pump.  Until something new is invented or unless I have a miraculous healing from God, there is nothing that can be done for my nerves.  Attempting to block the pain is the only option available currently.

So we were just in Dallas and having traveled 34+ hours in 2 weeks really had my nerves on edge.  (My problem nerves are the S1 on both legs, having had 3 back surgeries but apparently irreversible nerve damage.)  Prior to the SCS implant in January, 2009, my "limit", truthfully, was 30 to 45 minutes.  I could walk, stand, or even sit up straight BUT I only had that much time before the nerve would take over and take me out.  I spent 23 hours+ a day reclined and dreaded any time I had to try to be a normal person.  30 minutes is not that long.

So, on to my story.  We went to lunch as a family to celebrate my birthday and I was excited we were all together at one of my favorite places.   As we pulled up in the parking lot, I knew my nerve was not happy.  While waiting for our table, I sat down the entire time, worrying.  By the time we were seated (in hard wood seats, no less) my nerve was really flaring.  There was no ignoring this - I'd already done "too much" on this trip and was starting to pay for it.  The pain was so bad, I started to have that "hide from everyone" mini-panic attack with my mind swirling, "Oh my goodness, what will I do, not time for anymore meds, can't lay down..........".  As I felt the tears start to come up, I realized I had not turned my SCS up for the day!!!! (I turn it down at night, but never turn it off.  Because I feel some buzzing all day long, I don't always remember to turn myself up, UNTIL I push myself.)

With complete relief, I grabbed my SCS remote out of my purse and turned that puppy up 5 clicks.  The relief was instantaneous.  I don't think my family members realized how much I was hurting until I turned the remote up, and then they saw the huge relief come over me.  I just put my head on Andy's shoulder and almost cried from the relief.  lol  I HATE to fall apart in front of others, and had I not had that option, that is what would have happened.  And then I would have spent my "birthday dinner" out in the van, reclined.

I made it through dinner and then we were off to visit my in-laws who live on the other side of Dallas.  I had really pushed myself at this point, and the nerves just said "enough".  We weren't able to stay long, but it was good to see them.  Just too much driving, but I still realize without the SCS, I would have done NONE of that.

I have now had the SCS for 18 months and I can honestly say, it is a gift from God.  I pray every day that more people can benefit from this technology, but sadly I know it does not work for everyone.  But let me tell you this - if it DOES work, your days of feeling helpless and powerless to nerve pain are over.  What I experienced at that restaurant was POWER.  I COULD do something and didn't have to just suffer.  That is one amazing feeling, let me tell you.

With nerve pain, it isn't like "regular" pain that might come and go, or get worse with strenuous activity.  Nerve pain is 24/7 and it is a burning, searing awful pain that never stops.  I've given birth without meds, I've had 3 kidney stones, I've had multiple surgeries and recoveries.  This nerve pain has my number and used to eat my lunch.  Terrible pain.

The SCS relieves about 60% of my nerve pain on a good day and while that might not seem like much, it IS.  I am not off all meds but that is common and I am ok with that.   My damaged nerves are the S1 on both legs - the motor nerve, so any movement triggers.  Sitting, walking, standing.  Even laying in certain positions can trigger.  Reclining has been the only relief I have ever gotten and so the SCS is a definitely Godsend.

I hope this encourages you if you are researching the spinal cord stimulator technology.  I know that so often, folks that heal and do well go on their merry way, living their life, and often don't post on health boards for others.  Some times the only folks who DO post on health forums are the ones who haven't had good results, and reading their stories can be very upsetting.  I remember when I was researching whether or not I would trust another procedure or just let it be, worrying that I might make things worse.  I am so thankful I trusted my instinct and gave this technology a try.

And as my husband likes to joke, who doesn't want a wife with a remote control?!  lol

Have a glorious day!


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