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Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 2/22/2011 5:21 PM (GMT -6)   
This is going to sound mostly like a rant, but I so desperately need to blow the steam off. So if you don't want to read it, I'd turn back now. For those of you that choose to read this .... Thank you. I'm eternally grateful to having my Healing Well CP family to help on days like this, even if it's just to "listen".
 
So as some of you may or may not know on February 14th I completed my 10 day trial period with a spinal cord stimulator unit.  I had posted during my trial about how wonderful it was. And it was! For the first time in 3 years to not have my daily life dominated by my pain, or by my need for my meds; it was so wonderful. It was ... liberating.
 
And then it was over, and my hope with it. In one swift moment, just as quick as the doc pulling the temp leads out of my body, my hope for an improved future went as well.
 
I've gone through sorrow, rage, depression, back to rage, back to depression, to sorrow. And round and round, like a vicious cycle my emotions rage.
 
The part I'm leaving out is this: I had known going in the surgery was risky. I had been informed, before my trial surgery, that three seperate surgeons had ended up with complications during their procedure and their three patients had ended up paralyized.
 
The words were enough to stick in my throat, like a pill I'd swallowed wrong and couldn't get down. Paralyized. Wasn't living with my pain punishment enough? Did I have to stare that ugly option in the face and decide which way to choose?
 
On one side of the scale is an SCS unit, meaning pain mostly gone life, the return to qusi-normalcy, a decrease in meds.... yah there's things that come at that cost, but minor. Decrease in sensation in my hands? Minor.
 
On the other side of the scale is paralyzation. And they say it can occure at the surgical site. Well given how far up my leads go does this mean from my lower back down, or my neck down, and either way you cut it it also means saddling my mother and father till they're gone, and then expecting my son to help take care of me. Also could I live like that? I love to build things with my hands (regardless the pain). Could I give up all that my life has become, the only things that keep me going? Could I give up riding my horse, playing with my son, even just the casual joy of going for a walk, or swimming?!
 
Can I put who and what I am on the table as the price to pay if things go wrong?! I'm 37 with a 8 year old little boy.... how do I make that choice?!?!?! cry
 
It's accademic right now. I guess after the last three complications most surgeons in my area aren't even doing the surgery any more. That's where the mad part comes in. I spent all that money for my mental test, and eventually I'll see a bill for my trial surgery and such.... and now even if I get told the odds are in my favor so I choose to get the surgery, there isn't even anyone to do it. I guess the cervical ones have more risks then the normal implants. It's not like the unit itself is going to be implanted up there, but it's the fact that the leads have to be shoved nearly all the way up to my brain stem, and then given they "attach" the leads now with small sutures, it means going into my neck area to suture the leads into place; I guess that's where all the extra risks come in.
 
If no one wants to do it now I wish I'd never done the trial. Not just because of the monitary pain it'll bring me, but because I feel like I've been given false hope; I've had something bright and shiny dangled infront of me, been allowed to experience, and then had it taken away, never to see, or feel it again.
 
I just don't know what to do. I feel lost, and as a result my depression has become soul crushing. No one in my family seems to understand, so it makes it hard. My mother's overly optimistic and convinced even if the worst happened I'm strong, I'd be able to carry on. My boyfriend is overly optimistic and convinced the odds are in my favor and I'll be fine. I mention to them both "what if". My boyfriend won't even consider it, and my Mom, well she's convinced I'd find a way, and that my boyfriend would still want me... sounds like a stupid Disney Movie. I've already had two people walk out of my life because of my disability; the first was there when I got hurt, and he didn't even stick around long enough to find out what was wrong. He just figured I was faking, being lazy, etc. The second... my own husband left me. The pain wasn't the sole reason, but it was a major contributer because my pain got in the way of his happiness; and that's a direct quote. So I can't count on anyone to be there to help, and it doesn't seem fair to potentially burden him with me. And even then that also means I'm having to count on him being there for me. He deserves to be able to have his own future, his own life, to experience it to the fullest without having to take care of his mother. He's already had to do enough of that in the last 3+ years. I still can't even decide if I want to do it or not because I still don't have a surgeon to do the procedure, and I can't really afford to travel. At most I could handle finding a surgeon in California as it's next door to Nevada and I have alot of family still there. Anywhere else is just impractical; I don't have the finances to make that sort of trip. And I really want to talk to one, find out more info, find out the odds. How man are performed in the states in a year, how many are successful, how many have complications, how many this surgeon has done of my specific kind, etc. I can't make an honest choice until I have an educated answer.
 
See, even my post goes round and round just like my head!! I'm so confused and scared, angery and frustrated.  I just don't know what to do. I mean if my PM doc can find me a surgeon do I take the risk knowing what I could gain, but also knowing what the other outcome could be? I just don't know..... And of course my pain is back, in all it's raging glory, so that doesn't help.
 
I'm sorry this post is so long.... but thank you for letting me get it all off my chest. Even if there isn't anyone here to dry my tears and hold me, it's still nice to know I have my friends here who do understand. Thank you.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled and on Percoset for pain.
Hoping 2011 will see my spinal cord stimulator unit finally implanted.

Hope@Hearts
New Member


Date Joined Feb 2011
Total Posts : 2
   Posted 2/22/2011 6:03 PM (GMT -6)   
I don't know much about helping you find a surgeon or suggesting where to go for the procedure, I do wish you the best though. I know sometimes great things can come from surgeries. I have went through many myself from an auto accident on June 9th, 2002 and it really did me great. I can actually say that I still have all of my limbs and they are in good use. Good luck to you!!! :)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16273
   Posted 2/22/2011 6:41 PM (GMT -6)   
Hi Rhaevin, of course you are upset and have right to be. Its like you said, you had something wonderful happen that gave you hope and now you feel all of the hope is taken away from you. I, like you wonder what happened in those three surgeries and were those three done on cervical areas. I am sure that would really be something to have to give much thought to if you end up finding a dr to do the implant if that is what you decide. You have a lot of home work to do no doubt.

I do hope that you are on something for your depression, please don't let that get out of hand, it will hamper you on making good decisions. Please don't misunderstand me, but maybe a little counseling with a good psychologist might be something to consider. I know your Mom and boyfriend want the very best for you, but ultimately this is your decision. I wish I could do or say something to help you out and make you feel better. Just know that all of us here at HW are behind you 500% no matter what choice you make.

Please keep us posted on how you are coming along. Come here and vent it out, don't keep it bottled up. Please take care of yourself.
Moderator Chronic Pain Forum

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 2/22/2011 11:29 PM (GMT -6)   
Hi Rhaevin. We haven't met yet. I'm Loretta. I can see your dilemma. I don't have any advice on the procedure because I haven't had it done. There are members here that have the SCS. They may be able to advise you and maybe help you out a little. Like Straydog said, please don't let your depression get out of had because that will affect your decision making. You might want to see a dr. about the depression and then maybe it would be easier on you. I wish you all the best. Take care.

soft hugs
Loretta

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 2/23/2011 12:56 AM (GMT -6)   
Thank you StrayDog, and Loretta, and you as well Hope.

I have thought about going to see a doc about the depression, but the thought of going back to that ninny who can't even get things strait that I told her; I read my review of my exam and she misquoted things I told her. That and she didn't seem to fully understand or appreciate anyone with chronic pain; there was no sympathy there. So I am not inclined to go see her again. Of course it doesn't help that I also got a bill from them for an additional $200 I wasn't told I would owe for my test. I was told I'd owe them $150 out of pocket for my test ... and then two days before my test I guess my insurance covered more of my initial exam then they thought it would so instead of $150 I only owed them like $40 for my test. Now they're saying I still owe them $200 .... For one sheet of paper, and an hour infront of computer clicking a mouse they billed my insurance over $1000 for that stupid test I had to take. And like I said when I read my write up stuff from our initial 1 hour session face to face she got totally wrong. This isn't an office that inspiries confidence in a patient to want their help. I will have to look around and see if there are any other doctors of this kind in the area.

I'm doing my best not to bottle it up; that was part of the reason for the post. And I have at least one friend out here who somewhat understands my position. All the other little things don't help right now. Excessive winds (60mph) have forced me to stay in doors, and when it's not windy it's been cold or raining. Hard to spend time with my horse, even if I can't ride him. My last horse was always my emotional therapy. I could always count on Sierra to take me for a ride and keep me safe, even on my worst of pain days. My relationship with Tanis is still young, just as he is, but normally even just playing with him from the ground makes me laugh and smile and forget my cares for awhile.

I think also alot of my depression stems from feeling like I'm right back where I was over a year ago -- with no answers and no hope, my life in limbo. Everything was moving in the right direction. I was looking at doing my trial and then getting my permanent, getting moved into a new place, etc, etc, etc. Now everything is back on hold again waiting to see if I can find a surgeon. My nights are restless, and usually not because of pain, but because of my head. I hunt the internet, read articles, research as much as I can, until eventually I collapse into dreamless sleep, only to awaken early thanks to my pain.

It's comforting to know though that I have friends here. Friends who understand and sympathize. The people here mean the world to me. I can not thank all of you enough.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled and on Percoset for pain.
Hoping 2011 will see my spinal cord stimulator unit finally implanted.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16273
   Posted 2/23/2011 3:36 PM (GMT -6)   
I don't know why I forgot this but I did. We had to change my antidepressant back in Oct. I was at my PM's office and having my pump refilled and was talking to my dr. She offered to change it for me with no problems. In fact, the one I was on, I should not have been on it because of the pain medication I am on. I had no clue that certain pain meds interact with anti-depressants. So, from now on my PM dr will be the one to handle my chill pill for me. This may be something you want to look into.

You now maybe for a while, you may need to give yourself a break from all of this and let yourself get regrouped. If you are sitting up at night on the internet reading about this stuff, you have to be exhausted on top of everything else. Why not give yourself two weeks to get recharged.

Take care.
Moderator Chronic Pain Forum

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 2/24/2011 9:38 AM (GMT -6)   
 
  
    
Dear Rhaevin,
 
    Good morning *hugg* I am sorry I am so late in responding to your post. You have had a lot going on and I am so sorry to hear about the troubles you are having finding a surgeon. I hope there is a way for you to get it done in California. If it helped you, especially if it helped you a lot... It would be a good idea to get it done if it is possible. Many things run the risk of parallelization. The risks are doubled when surgical procedures are done in the cervical spine. In the end, trust your heart. If it feels right, then go for it. If something inside you tells you not to risk it, then don't. Only you know how you truly feel in your heart. Regardless of what you decide we will always be here for you. Good times and in bad times.
 
*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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antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 2/24/2011 9:49 AM (GMT -6)   
Dear Rhaevin,

I am very sorry to hear what you are going through! That is a lot to be weighing on your mind....even for someone who is not dealing with CP. I agree that maybe talkin with a counselor would help! I wish I knew what else to say, but I don't! Just know that your family here is behind you and that you are in our thoughts!

Take care of you!

Hugs,
Beckey
Rheumatoid Arthritis, Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement, Fibromyalgia, TMJ, GERD, Severe Depression, VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uterus

Medications - MS-Contin, Plaquenil, Cymbalta, Famotidine and currently Prednisone

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 2/24/2011 12:06 PM (GMT -6)   
We're all here to support you Rhaevin. I know it must be a difficult decision to make, but

like Dani said, follow your heart. I hope you are able to rest and that your

pain level comes down a bit. Your healing well family is here for you!!
SUZANE

One day at a time!!

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 2/26/2011 1:17 PM (GMT -6)   
Thank you all so much. Your kinda and caring words ... I can feel the hugs from here. I remember I said it once before; it's so nice not to feel so alone anymore. Everyone is so compassionate and kind.
 
The sleeping thing is still an issue, and I'm still looking for a councelor I'm comfortable with. I have an appointment to see my PM doc middle of next month ... though still no word on a surgeon. I still haven' decided if I will or won't. I really want to talk to the surgeon first, if we can find one. From there I will follow my heart and my instincts and make my choice. For now I'm trying to put it out of my thoughts and focus on other things.
 
Unfortunately, like most of you (though certainly by far we're not getting nearly as hammered as those of you on the East coast!) the cold weather has been adding to my woes. Why is it weather that should be scerene and beautiful brings so much pain and discomfort? I can remember as a child, and even a few years back, loving the sight of falling snow. Now I feel like Scrooge; bah-humbug I say!
For the first time last night I wished for my implant. My folks had gone out for a date night. No big deal, right? Well I forgot I was doing sheets. Again, no big deal, right? I do the sheets every other week, and I make my bed and my son's. My mom always offers to help, knowing that CJ's bed especially can be difficult given small sheets plus overly large mattress, but I always manage on my own. Not last night. For the first time ever I couldn't make my son's bed, and he's still to small to help. I refused to call my folks, they'd only been gone an hour, and interrupt their night out to come help me make the kiddo's bed. A half hour later, alot of pain, and much more tears, but I got it done. It hurt so much. If I'd had my stimulator I would have just turned it up. I've run into the days when I can't open jars, and the worst is not being able to open the creamer for my morning coffee... which is sometimes when the pain is at it's worst, but there's always someone there to ease my tears of frustration and accept my cry for help. Not last night.
If I don't hear anything by my apointment about a surgeon then I'll talk with my doc about expanding our search to California.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled and on Percoset for pain.
Hoping 2011 will see my spinal cord stimulator unit finally implanted.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16273
   Posted 2/28/2011 4:42 AM (GMT -6)   
You need to get you a small container that has the flip top to put your creamer in and I have a matching one for the sugar. I have a lot problems with my hands, opening jars or even holding a coffee cup can be a real challenge. I cannot tell you how many cups of coffee I have dropped or the cup just flips to the side and coffee spilled all over. I also have a lot of trouble opening up the bags that have the small zipper like what shredded cheese comes in, sometimes I can't get those open. But, I do like what I did with the creamer and sugar.
Moderator Chronic Pain Forum

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 2/28/2011 8:56 AM (GMT -6)   
StrayDog I have been there so many times -- dropped cups, spilled coffee. I end up staring at my hand as if to say, "You told me you had it!" The creamer does have one of those flip lids, both Coffee Mate and International Delight make a nice flip lip, it's just some days the CoffeeMate ones are a little tight.
 
I need to get my Mom to dig up her catalog again that she got awhile back and see if the company is still in exsistance; if it is I'll be sure to post a link! It's all sorts of stuff to assist with daily living. Padding to put on silverware to make it thicker and cushier to grap with sore stiff fingers and that sort of like. I remember she showed it to me a couple years back when I first started having problems with my hand. The lil zipper ones don't bother me, but opening things do, and the smaller the harder it is. I have grabber, grippy things for opening stuff, but some days it's not enough mostly because (like water bottle tops) the item is to small and hurts to have to clamp my hand down onto; something that fits into my hand doesn't hurt nearly as much as having to squeeze to make my hand the correct size.
 
Now those little foil seals on the other hand are gonna be the death of me. I can't get my fingers to get a grip on them, much less muscle them open; my Mom always has to open those things for me.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled and on Percoset for pain.
Hoping 2011 will see my spinal cord stimulator unit finally implanted.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16273
   Posted 2/28/2011 1:14 PM (GMT -6)   
I know I get really aggravated sometimes with the hands not doing what I think they should, lol. You know the old restaurant style sugar container that had a little flap over the lid that when you turned it upside down to pour the sugar came out automatically. I had two of those, one I used for the creamer. Those worked perfect until I got to where I could not twist the lids off to refill them. What I have now I just flip the top off with my thumb to open them and so far I can twist the lids off. I would however, like to have the website of the place you are talking about, I bet they have some really neat gadgets.

Foil seals are boogers to deal with, lol. That is where my handy little scissors come in to play, lol.
Moderator Chronic Pain Forum
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