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CRPSpatient
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Date Joined Mar 2011
Total Posts : 1276
   Posted 4/18/2011 3:38 AM (GMT -6)   
I had my appointment tonight to discuss the revision surgery for my SCS. The doctor agreed from the x-rays that there is an obvious problem with the location of the lead - and thinks also that 2 or 3 of the electrodes on the problem lead are sitting in subcutaneous tissues.

We've decided to go with the mini plate electrode as he thinks it will give much better coverage. The bad news is that because of where my battery and connectors are located, he's going to have to open up everything in order to connect the lead - this will mean cut number four in almost exactly the same spot. He is also going to try to do something with the lead anchors in my back to make them more comfortable for me. - because I'm quite slim they poke out and can get quite painful.

I'm going in for the surgery next Friday (29th April) and will probably be home on the Monday.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Post Edited (CRPSpatient) : 4/18/2011 4:13:30 AM (GMT-6)


Betsey Ross
Veteran Member


Date Joined Mar 2011
Total Posts : 1056
   Posted 4/18/2011 3:56 AM (GMT -6)   
Thanks for keeping us updated on your issues. We will be thinking of you and I will pray for you that your surgery will be successful When you wake up if you are in any discomfort you let the nurses know ..Dont put up with it- keep complaining until you get relief. I feel that this surgery will be very beneficial to you. when you feel up to it keep us updated. we are all pulling for you.

Soft hugs

Betsey
crushed lower knee and vertical fx of yibia/external fixator placed/plates and screws and tried to place big pieces of cartiledge under knee cap/tremendous pain in affected legcontinously without improving/allergic to metal in left leg/leg isnt straight/need metal removed in July/wait 6 months for healing/then toatal knee replacement/straighten out leg/more phsyxical therapy/take opana er

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16301
   Posted 4/18/2011 10:57 AM (GMT -6)   
Hi Laura, sure do hope this surgery is it for you for a long time and that you get the relief that you need. While I am very glad they are keeping you in the hospital a few days, I am totally shocked that they are. Now a days it is almost impossible to be kept in for 24 hours.

Keep us updated on how you are coming along.
Moderator Chronic Pain Forum

Mrs. Dani
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Date Joined Jun 2009
Total Posts : 2787
   Posted 4/18/2011 4:31 PM (GMT -6)   
 
  
Dear Laura,
 
     It is good to hear from you. How are you feeling? I hope you have had time to rest. I am so glad they finally going to go in again. On the other hand having to completely re locate and change everything will be very painful. I hope that this time, is the last time, you have to get this done. You have been in pan for so long that you deserve some much needed relief.
 
     Hopefully you can keep the pain down as much as possible until your surgery. Please know you are in our hearts and prayers.
 
*hugg*
  dani

TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator
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Pain Lady
Regular Member


Date Joined Mar 2011
Total Posts : 21
   Posted 4/18/2011 8:41 PM (GMT -6)   
laura,
I wish you more luck going forward and succcess.
i am fairly new here but i have out of control pain and copd at the same time.  next month i start with a new pain doctor and hopefully a referral to an expert in SCS installations for me.  The meds are causing the copd.  but i cannot function without the meds.
Please tell me, where and how much did they cut you to install the scs and how big is it?  i am terrified.
thanks, marsha
L3-L4 with hardware and cage, may 2006. Failed spine surgery. Now have fibromyalgia, nerve damage in legs and feet, in chronic constant pain. narcotic meds have left me with COPD. Not Fun.

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/18/2011 9:02 PM (GMT -6)   
Thanks everyone *hugs*

Dani - I'm feeling horrible. I've come in as the target of a particularly nasty, sneaky bully on another forum I use and it's really affecting me. As Rhaevin and the other CRPS sufferers will tell you - stress is a huge risk factor for causing flares so between the stress itself and the extra pain it's causing, I spent half last night with my head in a bucket :(

Marsha - I have my battery on my lower abdomen but most people have it on their buttock. I have a lot of scars, because mine's had to be revised a few times. The scars on my back are - I think - about 2 inches long and the ones on my abdomen are about 3 inches long.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Pain Lady
Regular Member


Date Joined Mar 2011
Total Posts : 21
   Posted 4/18/2011 9:09 PM (GMT -6)   
thanks, Laura
again i wish you much success going forward.  and relief. 
L3-L4 with hardware and cage, may 2006. Failed spine surgery. Now have fibromyalgia, nerve damage in legs and feet, in chronic constant pain. narcotic meds have left me with COPD. Not Fun.

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 4/18/2011 10:28 PM (GMT -6)   
I wish you so much success for your surgery Paula. You certainly need some days of relief

from your terrible pain. Please post an update as soon as you can.


HUGS
SUZANE

One day at a time!!

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 4/19/2011 9:05 AM (GMT -6)   

 

   Dear Laura,

     Good morning *warm hugg* I am so sorry you are in so much pain. I have to admit that it was hard to read about you when you first came. You have been through so much. It is when I meet people like you that I often wonder "How does she do that? How can she stay so strong?" Its been really nice getting to know you in chat as well.

     I am sorry you were treated so badly in another online community. I really wish I could make them leave you alone. Someone told me just yesterday "People will say and do things online that they would never do in person.". I think that is true. Forum bullying is so common place and very sad. Sometimes, for whatever reason, two people just don't see eye to eye. Then, for whatever reason, other friends will follow suit and "gang-up". In the end all you can do is be true to yourself. Let your light shine out-word, not in-word. Don't let the anger and hatred get to you. You are so much stronger than that. The more I get to know you, the more I have come to realize you are a fighter.

     I hope you are able to get you pain down, even if only for small amounts of time. You must be exhausted. Please know you are in our hearts.

*warm hugg*
   dani


TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator
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Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/20/2011 11:43 PM (GMT -6)   
Laura,
 
I'm glad they're getting you in right away. I know how much you need this, but I know through our conversations how scared you are. It becomes so hard to focus on the positive. But just think of how much better your unit will function, and the coverage you'll get; the relief at last!
 
I'm sorry they're going to have to go back in to get at your unit, but you and I both know that those leads are a tricky thing. Hopefully they can anchor things in a way for you so that there is less over all discomfort as no one wants to be in pain from something that's supposed to help.
 
You know how to reach me, and I'm always here for you. *gentle hugs* You let me know how things go, okay? I'll be waiting to hear from you and know that you're alright. You'll be in my thoughts and prayers for sure!
 
Love,
Rhavin
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