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Spinal Cord Stimulator: BIGGEST MISTAKE OF MY LIFE

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Posted 5/7/2009 2:35 PM (GMT 0)
I had a cervical spinal cord stimulator implanted from C2 through c6 in March of 1996.  The recovery was hell of earth.  When I finally healed and was able to get connected to the permanent unit.  the receiver was  implanted in my flank, I wore an external antenna over the receiver.  After all I went through from a brachial plexus crush injury in my chest from an MVA, over 100 nerve blocks, I went for the SCS.  Desperation we all feel when pain takes over our identity.  Six short months after almost 70% relief the leads moved out of place in my cervical spine and the stim no longer went to my lower arm and hand but to the back of my head and neck.  There were no options to remove it due to scar tissue over the leads and the risk of removal carried a chance too high for quadripeligia.  So here I was so full of hope with 3 teen age daughters and pain back with a vengence.  I wish I'd NEVER taken the chance at the cervical implant.  If I knew before what I learned after, I'd never have done it.  The neck is far too flexible to implant SCS leads.  The surgeon stitched them in so a total laminectomy would have to be done to dissect the leads off the nerves in my epidural space. \ Any bleeding in my epidural space would be catastrophic.  So here I am, 13 years later, can't have an MRI due to metal, dependant on oral meds to function and resentful as hell.  The surgeon who did the deed, lied to me, he'd never implanted a SCS in a cervical spine before.  Then when his work failed, he refused to even see me again.  I tried to sue, but I didn't have a case.  Thank-God for the pain center I use.  The comprehensive nature of this center provided all the psych care I needed to get over the failure, to try again to find hope through pain.  They also referred me to an oncologist who was willing to treat non-malignant pain.  The CRPS which started in my right chest, arm and hand has now travelled through my brain stem to all extremities.  I break bones easily due to osteo from RSD, Most days I'm able to put mind over pain and function pretty well.

I guess the moral of my story is,...........Don't make any rushed decisions over surgical decisions that can be life changing, good or bad.    Pain makes people do desperate things, I was desperate to find relief from pain for the sake of my family.  EDUCATION< EDUCATION< EDUCATION before you left anyone mess with your spine, lumbar or cervical.  Life goes on, it's too short to look back, so I'm doing the best I can.  I've found a way through a lot of therapy  to create a meaningful life.  I was an athlete before my injury, it's hard to find things to give the same enjoyment of life before pain.  But I'm alive, it could always be worse.  With the supportive MD's treating me now, who promised to see me through for as long as I needed them, I'm able to work and lead a pretty good life.  Please get all the info you can, see several MD's before any implants are places in your spine and find a doctor who has an extensive background in implanting Stimulators before you let anyone make a decision that you, yourself are not ready to make.

Post Edited (SuzyMCMONT) : 5/7/2009 8:46:31 AM (GMT-6)

Posted 5/7/2009 2:55 PM (GMT 0)
Bless your heart. So you can't have the stimulator removed ever because of the risk of quadraplegia? That seems so wrong. And the fact that the surgeon would do such a procedure that he had never done before. He should have been honest with you, declined to do the procedure and had someone more experienced to do it. But we could go on and on about how wrong this all is, and it won't change anything. Have you found out what your options are? Is there a way it can be removed with a lowered chance of the involved risks? One more question...why did your surgeon refuse to see you again?

I am really sorry that you are having to go through all of this. And I do mean that. We here from the forum cannot change the situation but we can offer you the support and friendship that you need. That will help you a little to provide you strength and hope for each day. Take care of yourself and post as much as you care too. Good luck to you.

Anice

Posted 5/7/2009 3:09 PM (GMT 0)
SuzyMcMONT

Welcome to the Chronic Pain Forum WOW you have been through allot haven't you! Sorry you have been through all that and have ended up here, but you have found a very good place, and hopefully you will like it here and join us and become part of our family, you are here so you really are already in the family! These are really great folks here, caring and compassionate, they are the BEST! So again I say Welcome!

Suzy you have given some very good advice Education is so very important before making such a critical decision! You know the VA wanted to put one of those in me. back in 99 and I said no, they were having reports of the wires breaking and the same type of problems you were having, that is scary to say the least, it is not for me!. Just a few months ago my pain doctor suggested I consider it again, but I have to many places that would need it and I have again rejected the idea. Cervical spine is a very critical area, not something to be taken lightly. But really that applies to any area of the spine, Thorasic and Lumbar!

I am glad you have found us, I hope you stick around I think you just might enjoy all the folks here!

Good Luck to You

White Beard
Posted 5/7/2009 4:32 PM (GMT 0)

Thank-you for the warm welcome.  It's been a very long haul and much of which I'd like to forget.  The surgeon who implanted the cervical stimulator assured my husband and I that cervical implants were no more difficult than lumbar spine ones.  He is the best spinal surgeon in the third largest city in our state.  Came highly recommended.  I think he knew he screwed up.  Thus the reason for refusing to no longer treat me.  If there should be an emmergent reason for removal , I'll find a Doc anywhere in the US who knows what they're doing. I'm certain my Dr's at my pain center will do their best to help.  My Doctors at the Pain Center were irate when they found out that he'd placed the leads so very high in my neck, they should have started at c-4 not c-2.

The closer to the brain stem, the more dangerous.  So I'm stuck.  I have an excellent oncologist who has taken over treatment of my pain.  I think you all know that with pain, the "drug abuse" issue is a big one.  He is one in a million.  I signed a contract with him to only get pain meds from him, use one pharmacy and submit to random urine testing.  It's to protect us both so he can continue to treat me.  I'm married to the love of my life for nearly 33 years.  We have 3 grown daughters, a 2 year old grandson  and our youngest daughter just became engaged to marry.  I can still work, though it zaps me pretty much.  I lost my only sister at 47 to cancer.  Her death put a lot in perspective for me.  I'm alive.  I watched our daughters grow into beautiful young women. Something she missed with her sons.    Our grandson is a life changer if ever there is.  Choosing between life in pain and death is a no brainer.  I'll take what I have and do my best.  Good days and bad.  I had a therapist through the pain center who saw me for nine years until I could solo through life without her.  Without the love and support of family and friends, NO ONE can live with chronic pain.  Thanks again for your loving words of support.  I'm looking forward to getting to know all of you.  Suzy

Posted 5/7/2009 4:53 PM (GMT 0)
Suzy,
I just wanted to add my welcome to you. The way you have come through your challenges is remarkable and inspirational. I am so glad you found us and joined us, as I've already learned from reading your posts. I know others will, too.

Thank you for sharing!

PaLady
Posted 5/7/2009 6:34 PM (GMT 0)
SuzyM,
Let me add my welcome to those of the others. You are at the right place for support and some comfort.

The doctor who did your implant really messed it up. You said you tried to sue but "didn't have a case". I think you need to try a new lawyer. Based on what you have said I think you have a very STRONG case for malpratice or at least misrepresentation of his experience with SCS implants in the cervical spine. The fact that your doc doesn't want to see you is very unprofessional. I would get a very good personal injury attorney and let him guide you through the process. A settlement could be used to get you to the very best of neurosurgeons to review the possiblity of a repair. I think you have been the victim of poor advice and unprofessional behavior. You don't need to accept your situation.

I wish you the very best no matter what you decide to do. We are all here to support you in getting better. If you wish I would be happy to discuss this further.

Best,

Modelmaker
Posted 5/8/2009 12:59 AM (GMT 0)
Hi Suzy,

Welcome to HW! I am sorry about all that you have been through, but you have found a really great group of understanding, supportive people! Your advice is very sound. Education is very important, especially prior to such invasive procedures. They are certainly not something to take lightly!

Skeye
Posted 5/8/2009 1:32 AM (GMT 0)
Oh Suzy...I'm so, so sorry that you had such a horrible experience.

Are the oral meds helping at all?

I don't have any words of wisdom but I just wanted to let you know that I'm thinking about you and sending you hugs.

Danimal

Author of Chronic Stimulation- a blog about being in chronic pain and living with a neurostimulator

www.chronicstimulation.blogspot.com
Posted 5/8/2009 1:48 AM (GMT 0)
Welcome Suzy,
I'm so sorry that you have had to live through such hell when all you were trying to do was get well. I've had 4 cervical disc surgeries for herniated discs. The first surgery scared me to death. Our three girls were in grade school and I was worried that if something went wrong that I would be paralyzed. Thank God I was lucky and didn't even require Tylenol post-op. I have Scoliosis and things just kept deteriorating. My Doc is great.....not knife happy at all and only does surgery as a last resort. I just passed my year mark after the fourth surgery and things are going pretty good. I've had several nerve ablations and cervical and thorastic epidurals to help with headached and chronic vomiting from pain. I also have fibromyalgia and Lupus in the mix but nothing like you have been through. I'm so glad that you got to see your daughters grow up. I'm sure that your bravery and refusing to give up the fight to be able to see them grow up had something to do with them being such wonderful young women. My prayers are with you. I just had to retire from my job in July.....I'm an RN and I miss it terribly. I also have three great daughters and we just had our third grandchild. My husband is the love of my life and the things he does for me on days when I can't move.....well, he is just remarkable. I couldn't do without him. Even on the worst days we can count our blessings even though it is hard. Hope you have a good night.
Nurse2
Posted 5/8/2009 2:05 AM (GMT 0)
 Hi Suzy and Welcome to our Family.  I am so very sorry for all you have been through and still have to deal with.  Thank you for sharing your story with us!

I agree with everything said especially what Modelmaker suggests.  You need to find another Lawyer, something is very wrong with what has been done to you!  The fact that the NS won't even see you is very very unprofessional! 

We are all here for you, with our support, friendship and most of all understanding!

I am sending you warm sunny hugs from Phoenix

((((((((((((((((((((((((Suzy))))))))))))))))))))))))))

XXOO
Patti

Posted 5/8/2009 4:40 PM (GMT 0)
I am considering a trial for a lumbar disc problem... this story is a bit frightening. I hope that you are doing well and thank you for sharing your story!
Posted 5/8/2009 5:53 PM (GMT 0)
SuzyM,
I too have a regret...I regret having Lumbar Spinal Fusion Surgery L5-S1... I really have limited options now because of it. If I had waited I could have tried something else, but now I am stuck with a stiff lower back, cracking, popping, shifting of bone, and most of all....Pain.. So, I understand regret...I am so sorry that you are going through this but you seem to have it under control...maybe you could let us know your secret....

Me.
Posted 7/20/2012 4:24 AM (GMT 0)
I am starting injections for a 15 year brachial plexus injury. The pain has gotten so bad that they are recommending a SCS. Or brain surgery. I am now nervous to get the stimulator. It would be C2-T3. Has anyone had good results? My pain as of now with meds is a steady 8/10. If injections work the best they said would be a 5/10. I started Cymbalta recently and it took it down to a 7-8/10. I also have CRPS in both arms and neck. Not sure what to do. I have no quality of life with this much pain. Any help would be awesome. Thanks!!!
Posted 7/20/2012 5:18 AM (GMT 0)
Hi Ames...

This is an old thread from a few years ago.... most of the people on this thread aren't even here anymore. But we have do have members w/ SCSs... as well as CRPS...and we all understand chronic pain. So - could you please start a new thread... you can just copy/paste what you already wrote if you wish.

Thanks --
Tina
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