RSD Update

Many people have been asking me how things have been since my surgery, what I’ve gone through, and just how much of a difference it has made.  I’m at the point where I’m ready to share the last few months of my life and just what a wonderful thing these doctors have done for me.

Many people have known about my RSD for the last seven years as I have shared the story of what happened with everyone I've meet, yes even the guests who’ve been on Cowabunga Corner know of the factory in which I got hurt.  It was seven years of pain, in everything I’ve done, even my friends and family were affected by this as they feared touching my arm, standing too close to me, and hated seeing me do stuff with the arm knowing how much pain I’d be in for the actions I did.  It was a stress, pain and mentally sore spot for me, which is why in 2008, I was offered a surgery which would help with my pain levels, I said yes.

I did the research they told me too, and even went through the trials.  Though you can read about that in my original RSD story here on Cowabunga Corner.  The waiting was hard, and the rejections from Worker Comp was annoying.  A few months ago when I got a rejection letter in the mail from Worker Comp, my family got angry and this time I called.  I told off the lady who answered the phone... why when all my doctors say I need this surgery, someone who’s never met has the right to approve or deny me this chance of living again?!  It’s not them that’s in pain, it’s me and anyone who knows me says I need it.  She realized how upset I was and told me either my doctor had to appeal it, or I had to call my case worker and have him overrule it.

I called my case worker, and that’s what he did. In the matter of weeks, the choice was overruled, I had a date to meet the doctor doing my surgery and things were starting to roll in the direction that I wanted.

Of course with any surgery, there comes a fear.  My doctor made sure I knew this fear as he told me how bad things can be if there’s any mess ups.  How I could even be paralyzed.  I decided to take the chance in hopes of having a normal life again.  The fear was not greater than the pain within me and I wanted that pain gone.  Things were set up for November 18th. I was to go in for the surgery.

I went in more excited than scared, as we got there and they told me once again all the reasons I should be scared.  But the person talking to me mentioned something no one else has told me about. They had to remove bone in my neck, a little piece but it will hurt.  I still agreed and things got started.  When the surgery was starting, they put me under and I got to sleep as they worked with the hopes of waking up and my arm feeling better.

When I woke up I was in a recovery room, with nurses checking me over.  My doctor was no where to be seen, as I realized my neck hurt really bad, I could barely move.  I stayed laying there as I looked at my arm... it felt the same as normal, painful. I just figured that the device within me was not turned on yet, and when the people from Boston Scientific got there, they’ll turn it on.  Though before my worker from there came to see me, my family came in.

I looked up to my mom happy to see her, and mentioned that the device was not turned on.  The look upon her face as I mentioned that showed that there was something wrong, and she thought I would of already known.  My mom filled me in, as they just saw my doctor.  A wire was lost during the surgery, and to prevent infection they needed to close me up without finishing the surgery.  They wanted me to go in two weeks later for a check up to see if I could get a second surgery to connect the wire to the battery in my chest.  My hopes of my arms being ok that day, were crushed and on top of my normal pain I now had the back of my neck sown shut and throbbing.  The doctors approved me to stay only one night at the hospital, sending me home the following day.

The following weeks were pure torture.  Needing more pain pills than I care to take, not able to take care of myself and barely able to move.  Though as I started to get my freedom of movement back, a new fear was now setting into me.  I had to go back into surgery to have the wire connected, once I start to feel better they’re going to make me feel bad again.  This was the fear that I was able to avoid with the first surgery, as now I was feeling a lot more pain.  A nightmare. Though I knew the only way to go now was forward there was no backing out.

On December 12th, I was brought in for the second surgery. Things went faster this time, as they got everything right.  I woke up to find that the wire is now connected as I was taught how to use the remote for the device.   Taught how to charge the battery within me.  Then I was sent home as the real healing has begun.

A dream has come true, the surgery that I’ve waited for so long is now done.  Seven years of living in pain, I am finally finding some relief.  Relief that I was beginning to think would never come.  Though the real question is, how much relief do I still have?  I’ll be honest it depends day to day, I really say it’s around 80% because I do still have problems.  But I can do so much that I could not do before...

Touching is no longer a fear of mine.  I can touch people, things, wear long sleeves, and even go as far as giving high fives.  Wind and bumps are no longer attacking me.  This here is the biggest difference for me.  My friends around me are still nervous of the arm after seven years, but I am loosing that fear as I clap, give high fives and other things just to show that it is back.

Cold is my biggest enemy, I found that even freezing wind still hurts my arm.  Cold water from the sink hurts.  So I gotta make sure the water is at least luke warm before putting my hand under it.  This saddens me as I want to be able to go swimming again.  Though if swimming is one of few things that I have to cut from my life, it’s a smaller price than what I’ve paid the last seven years.

My Goals, I now want to get a life going again.  To do so I want to be able to get therapy for my arm to build up the strength, start walking the zoo weekly, and other things to get back into shape. I’m hoping in a year or two to open my own business and rejoin the working world.  I want to keep Cowabunga Corner going the full time, as I feel this is something people are enjoying and I enjoy sharing with everyone.

Here’s hoping that things keep getting better from this point on.  Thank you to everyone who has helped and support me through the years.  It’s been a long battle, and I really respect everyone who has been there.  Thank You.

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Comments

Michele Ivey's picture

Hiya,

I'm really sorry to hear that you've got RSD too. I highly recommend talking to a pain doctor about a Spinal Cord Implant. I got this done a year ago, and while I don't have everything back I do have so much more in my life that I thought I lost for ever. The company that supplied my Spinal Cord Stimulator is Boston Scientific and this thing works wonders for me.

I talk about the surgery and the process I went through for it in full detail here: http://www.cowabungacorner.com/reviews/surgery-the-pains-and-rewards This surgery is sadly not for everyone with RSD. I know people who've gone through the test surgery with no luck on helping them through the pain. So make sure to talk to your pain doctor before advancing into this direction.

I wish you the best of luck!

Hi, I was doing research on RSD as I have had it in my arm and hips (and it seems to be spreading now) since 2009 and found your site. I am writing to find out what type of surgery you had. I have RSD in my arms and hips (I am married so sex has become a #1 wish) and I am trying to stay on top of the disease as it seems no one else is. Any info you can send me to I would so appreciate it.
Thanks
Faith Smith
Texas

So glad the surgery is over!

That surgery was really a biggy that you went through Michele, I am so happy that it is over with and that it has helped you so much, congratulation, and Thank God that it really this worked. I have been with you since day one and realize that your injury was really way bigger then your work treated it. We are lucky you weren't sitting in your metal chair at work, or it would of killed you. Many never knew how bad you were hurt, it is hard when people can't see the injury, the only visual part of that injury was on your left ankle where the electricity existed your body and that wasn't even the area that hurt you most. I hope now that this surgery is done, it keeps on working for you for the rest of your life. LOVE MOM

Fugitoid's picture

I've been there with ya since the beginning too and have seen first hand how debilitating your RSD is as well. All these years I wished that I could do something more than just sympathize. But I do remember walking ahead of you one time (I think it was in NYC) trying to block the wind for you. :) I'm proud of you for being strong all these years and being able to share your story in the video even though it was emotionally very hard. I was very happy when you told me that the surgery was finally performed. And even happier that it is effective! Onward Ivey!

Your friend,
Fugitoid

-->> wow -