Spinal Cord Stimulator Progress/MRI Results

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Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/12/2011 1:36 AM (GMT -6)   
So as some of you may know two weeks ago I met with a Brain and Spine specialist surgeon that my Pain Management doctor had sent me to in hopes of finally having found someone to perform my SCS unit implant. We had hit a minor hurdle in that no one has ever bothered to do a cervical MRI on me, and I'd left his office with a referal and a follow-up appointment to discuss the results.
 
Last week I had my MRI and picked up my films. I was a little concerned when I read the results. Words like compression, and degeneration, and even tear, but no where did it talk about narrowing, and the few places it did it was so minor from what I could decifer. So I went in for my follow up with my surgeon hopeful this morning.
 
And I was rewarded for it .... According to the surgeon I am fully able to have my SCS implant surgery done. I do not have a date yet set, but they're expecting the start of May; less then a month away. He just needs to be able to coordinate a date with my PM doctor, and obviously my Bostom Scientific rep as well. We again talked about the risks, but in light of some new information, I wasn't as worried as I'd originally been.
 
You see back when I agreed to let the gal from Time Magazine print my story about my struggle with chronic pain I had one major goal -- making "normals" more aware of what people with CP suffer with, and especially to bring more light to the evil disease I suffer with -- CRPS. At the start of February I'd had a successful trial run implant, and got 10 days of paradise; a taste of what my life could be like. But on Valentine's day, when my PM doctor had pulled my temp he broke the news to me. Due to some surgeries gone bad, alot of surgeons in my area were no longer doing the procedures. I was devistated and a bit more then upset; all that to not know if I'd ever be able to find a surgeon to do it, and the risks of what could happen to top it off. The thought of facing potential paralysis at 37/38 years of age, and a single mother to top it off left me sleepless as I debated whether or not I wanted to go forward. I had contacted the author at Time and given her the last minute details, and she tucked it into the article which ran the start of March in their "Understanding Pain" special. I told my family, "Maybe I'll find a surgeon out of this."
 
Last Friday I got a call out of the blue. It wasn't the best day -- my close friend (I keep my horse on her property) had had her gate get opened the previous night, and one of her dogs had gotten out and gotten hit by a car. The dog miraculously made it through the night at the shelter, and I rushed her to up and then to the emergency vet's office. While there my phone rang and I was only half listening to the doctor's office rattled at me... I just assumed they were calling to confirm my appointment till the doctor got on the line.
 
He'd read my article in Time and wanted to help. He handled alot of CRPS patients in the Las Vegas area, and had assmebled a team of surgeons which were all very skilled in doing the Stim Implants. He discussed the cases that had gone wrong and why they did; un-educated surgeons that didn't like to necissarily go by the book when it came to doing the implants. He told me he wasn't trying to steal me from my doctor, and that infact he knew my doctor and had a great deal of respect for the man; that he was one of the most compassionate pain doctor's in the area. I told him who I was seeing as a surgeon and he reassured me with how he knew him also, and his reputation was stellar! That of all the surgeon's I could have been paired up with I got one of the top spinal specialists in Nevada. We continued to talk for awhile about odds, and errors. I asked why so many surgeons weren't more well versed in implanting the stims, why errors like putting the unit to deep so it wouldn't charge, kinked wires, improper suture location. We talked about the paddle leads that will be used on me, and even the three different makers of the SCS units -- and that for what they're trying to do for me the Boston Scientific is the best model. I mentioned needing the MRI and such, and he told me that if for whatever reason my surgeon couldn't do the implant I was welcome to come and meet with his team to discuss other options. He was so affraid that I'd been scared off from having my implant done, and all he wanted was to see someone that had gone so long without reliefe, and now so close, get the reduction in my pain that I deserved.
 
I even asked him about the Ketamine Infusion treatments Laura had mentioned they do for CRPS patients in Australia and why we don't do them in the states; supposedly the reason is that more then likely no insurance company will ever authorize a payment for that sort of treatment.
 
When I saw my surgeon today he went over where they'll make the two incissions. He talked about how he'll remove just the tip of one vertibrae that's really somewhat useless (the tip that faces outwards) and then shave away abit of the bone to make a larger opening so he can insert the paddle leads in, as well as have room to suture them into place. I asked if I'd not had room for the paddle leads if we could suture the normal leads and he said yes, but it was a bit more tricky. I had asked the other doctor about this typical procedure of not suturing the normal leads and he said that they could be done, but most doctor's didn't which is what tends to result in the lead migration. If more doctors would just take the time to suture the leads down there would be way less migration cases then there actually is. Yes, they're more difficult to suture into place, and they don't offer as accurate coverage as the paddle leads do. So I'm looking forward to m paddle leads now that I know I have the space needed in my cervical area.
 
So around the start of May, whether it's a late birthday present to myself, or an early Mother's day present, I should be scheduled for surgery. I'd be lying if I said I wasn't nervous, but I'm also excited. I have waited so long to get to this point, and I'm almost there ... less then a month!! Given it was October 2009 when I was first told about the SCS being my best option to combat my non-responsive CRPS I have looked forward to this day for a long time. And after such a successful and wonderful 10 days with my trial unit, you can bet your boots I'm looking forward to the improvement in my life.
 
I know alot of people talk about the failures that seem to happen after about 5 years, but you know what... I'll take 5 years as pain free as possible, with a (hopefully) dramatically decreased narcotic use, over the living hell I am experiencing now, and the need to up my medication every couple of months as my body coninutes to build up a tolerance to it. I would rather have those 5 years then nothing at all. And you can be guarenteed that I will make the most out of that time while I have it!
 
Besides, the surgery couldn't come at a better time unless it was next week. What with the temps starting to raise again, the horrid sleep, the increasing flare ups, the sensitivity, the constant crashing due to pain overload on my body...
 
Thank you, to all of you, for having been here with me for the last few months. For helping me keep it together on those bad days when I get frustrated and angery at what my life's become, and how much I've given up. For the days when the pain is so bad I want to curl up and cry and do nothing else. For the suggestions and the feedback, the point of views, and the hugs. Thank you for everything you've all done for me. *gentle hugs*

Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled, on Percoset.
February 2011 successful SCSU trial
No surgeon willing to do my SCSU Implant

Post Edited (Rhaevin) : 4/12/2011 1:40:25 AM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16274
   Posted 4/12/2011 2:54 AM (GMT -6)   
Rhaevin I think this is wonderful news for you. I can feel the excitement in your post. Sounds like the best present you could ask for. Of course everyone wants the best outcome for you after surgery and hope the final implant is every bit as good as the trial. Its always nice to have something good to look forward to

Best of luck.
Moderator Chronic Pain Forum

Post Edited (straydog) : 4/12/2011 8:55:02 AM (GMT-6)


CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/12/2011 7:22 AM (GMT -6)   
Rhaevin, I'm absolutely stoked to hear your news. Please keep us posted with everything that happens.

Thinking of you *gentle hugs*

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

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

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 4/12/2011 7:44 AM (GMT -6)   
Rhaevin,
sounds like good news indeed and a very good surgeon helping you. Keep us posted when the
surgery date gets closer so we can send you healing hugz and prayers, but for now a big
WOOHOO...
(((((((((((((((((((((((((((((((((((((((((((((Rhaevin)))))))))))))))))))))))))))))))))))))))))))))
Healing hugz
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 4/12/2011 8:26 AM (GMT -6)   
Rhaevin,
Congratulations! I am thrilled for you! This is wonderful news, and I can feel the excitement in your post!
I hope that this turns out to be the best thing you could have done for yourself.......a late birthday present or an early Mother's Day present, either option sounds terrific to me.....
Would it be possible for your surgeon and this other surgeon and his team to work together on your implant? If so, it sounds like you have created your very own "dream team".
Anyway, just wanted you to know that I was waiting for this.......and am so glad it looks like some relief is on it's way in your direction.
Sandi

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/13/2011 12:30 AM (GMT -6)   
Thank you so much, everyone. As I said, this will not come soon enough. My pain has been horribly crippling lately, and more and more of late I have had to ask my family to help me do basic things; it gets frustrating and makes me want to cry far to often.
 
I will see my Pain Management doctor tomorrow for typical perscription refills; I guess we won't need to talk about upping my doseage, not with knowing the surgery is coming, and with it hopefully weening myself off my Percoset. I will still talk to him about anti-depression medication -- I've promised myself this time I will NOT forget to ask about that, especially in light of the fact that I may very well be loseing a member of my support team; my boyfriend.
 
Saddly things have been coming to light lately that have caused trust issues. It's heartbreaking for me because I can sense that he means well, that he wants to do the right thing, but his method of communicating, or in truth lack there of ... of omitting things from me, has caused me to question what else he's not telling me. If it was something minor, like leaving out little details, I would understand, but they are omissions that I fear he's keeping to try to keep himself from looking bad, or hiding a not so nice aspect of his personality. I really want to trust him, but I'm finding it hard to. An example I could give would be telling me about getting laid off ... the omission being that he basically told his boss, when he was threatened with being fired if he didn't start conforming to how he was supposed to run the business , to go ahead and fire him. I tried to explain to him why the omission hurt, that he hadn't been totally honest with me in regards to the why he got fired. I guess he didn't understand as he said he felt it wasn't relevant; it's totally relevant! By not telling me the truth I feel like he just told me for the sympathy, and I'm sorry, but when you basically yell at your boss "fine, go ahead and fire me!" it's hard for me to be sympathetic, especially given in a down economy when you don't know when you'll find work again.
 
There are other things, things that I simply can not ignore, certainly not in light of the way I was treated by the last two people in my life, and certainly not with a son to raise and that I need someone who can be there for me when I need them to be and not blow me off for something trivial and then tell me I'm blowing it out of proportion. It hurts, I feel betrayed. I mean he took me to my trial surgery, he stayed and took care of me for four days, but now it's like he's realizeing just how much work and effort a relationship with me and my son will be and he's not willing to change. I am willing to accept and work with him on certain things, but other things ... I have flat out told him that if he can not do something about two major things then it will not work between us. He didn't try to apologize, didn't ask for another chance, that he'd work on it, that he wanted things to work. Instead the next time we talked he treated me like the conversation never happened. I just feel so betrayed and hurt, and I do not need this sort of emotional stress... not now. As if my pain and my meds didn't cause enough depression, let's add something else to the pile. cry
 
Maybe he feels I'll be a different person after my surgery, easier to deal with and be around, but unfortunately that won't change the issues I have with him unless he does something about them. I want to give him one more chance, but I fear it's over and I'm just dragging it out in hope that he's sincere about how much I mean to him.
 
At least I still have my family, both in my home and here.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16274
   Posted 4/13/2011 1:34 AM (GMT -6)   
Sorry to hear you are having bf problems. One thing I learned about asking someone to make a change it generally never happens or if an effort is made its temporary. That other person usually feels its not necessary to make any changes or it's the old you know how I am story. I have seen this with friends & family in relationships too and it just never works out. Then some people are set in their ways and feel there is no need to change for anyone. Its tough call I guess, the old line of if you love me you will change is a real bad one to use too because it just does not work that way. Perhaps you will get lucky.

But in reality you have some big fish to fry soon in terms of having surgery. Deal with that for now, thats more important than anything is to get you past surgery. Concentrate on that & let the other stuff fall into place.
Moderator Chronic Pain Forum
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