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stumped by pain
Regular Member


Date Joined Feb 2011
Total Posts : 23
   Posted 3/1/2011 1:42 PM (GMT -6)   
Hi everyone...
 Just stopped in to update...Just got off the phone with PM procedure nurse and its gonna be 4-6 befor they can do the trial stim. shakehead
 
  Was so hoping to get things moving along. They have to do there paperwork and get with insurence and on and on. I thought all that was done.
 
 Got new pain med so that helps some but nite time is still the same thing go to bed and hurt. guess when i start tring to relax it fires up more.
 
  Just so let down with the wait again. Knw shouldnt b surprized but i was (am). So looking like might get date by end of march or 1st of april.
  so much for planning 30th annivary .dont want to plan much now may not feel like a lot all depends right.
 
   Well thanks you all..hope your having a low pain day.

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 3/2/2011 12:52 AM (GMT -6)   
Stumped, I know the wait seems like forever but just think .... 4 to 6 weeks!!! You have a rough idea WHEN you'll be getting to do this, this is a good thing, it's way better then having no date.
 
Are you excited?! And you can still plan alot of your anniversary. Figure out what you want to do, where you want to go, those sorts of things... and then once you have a date then you can start finalizing arrangements and making the other date! So it may be a little late from the exact date, I'm sure your spouse will understand.  =)  I mean I know I didn't have the most romantic Valentine's ever, given that was the day I was having my trial wires pulled, but we had a belated evening instead; kinda that whole better late then never, and at least you have a legit excuse.  Just take into account you may not want to plan to much until your trial is over, but everything should come off and out with no fuss or muss. I was told I could leave the doctor's office and go home and shower if I wanted to.
 
I know it seems like a lot of hurry up and wait, but your doctor can only move so quickly, alot of it is the insurance company. It's why only four days into my trial, when I knew my permanent was the thing I wanted, I got on my PM doc's case about "So how soon can you find me a surgeon so we can start all the paperwork process so I can get my permanent in as fast as possible?" Knowing I'd need a referal to the surgeon, a visit with them, referal for the implant, insurance approval for the implant, and on and on and on! Oh the red tape those people can create is enough to make a person frothing mad -- this is our life you're so casually messing with, and I know it doesn't mean squat to you, I'm just another file on your desk, but try to handle my situation as if it were your own, 'kay?
 
I'm really excited for you, you'll have to let us know when your date is, how the trial goes,... etc!!
 
Remember, it's March 1st now.... the end of the month isn't that far away!
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

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1560
   Posted 3/2/2011 1:01 AM (GMT -6)   
Congrats Stumped! I'm uber jealous! I know I will never get the Stim cause my ins....Wyoming WC refuses to accept the fact that they do work! So, now its the waiting game for ya. It will go fast I am sure. Hope your ins approves.

Hugs

Scarred
I live to "Tame My Pain!"

stumped by pain
Regular Member


Date Joined Feb 2011
Total Posts : 23
   Posted 3/2/2011 10:23 AM (GMT -6)   
Thank you for support!!!

I did talk to hubby last nite...he took me out to mexican yum and he said the very thing...after 30yrs it will be fine to have belated date,so he is great. made me feel better.

Scarred..we lived in Wyomin in the 90's (green river). I gotta say yep i understand. sorry about ur ordeal. Still got snow? Oh man the winter up there..its pretty but long.loved going on sunday ride in the mountains. I found out I have RA when we lived there.

Rhaevin i gotta laugh cause that was my first thought...when the tape and all comes off i want a shower.

I am tring to get things together for trail..my hubby got me a new fauset for the kitchen with a spray nosal that comes right out the neck so i can wash my hair.(i hope)

Iam excited to try this stim..still got some fear but thats gonna be because of the unknown.

If you have any suggestions on things that would make trail period better(easier) please share with me.

hope yall have a low pain day thanks again

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 3/3/2011 1:48 AM (GMT -6)   
Suggestions to make your trial more bearable... also know as "things that worked for me". Please keep in mind my pad and tape ranged from about my shoulder blades down to my waist because of where the wires had been inserted.
 
Because of restrictions for bending and twisting I was grateful for the attachment to the tub nozzle, just slip it over the spout, to wash my hair. It was a cheapy I'd bought at WalMart years back for when I used to wash my dog in the tub; glad I kept it! Because the tub height was just perfect with a towel folded on the edge for padding, I was able to kneel infront of the tub, rest my chest on the towel, and lean over the tub with the long attachment. My mom put the shampoo and the conditioner in my hands as needed, but otherwise I handled the rest. Make sure your towel is close at hand!
 
Lots of sponge baths with a washcloth. It's not the same, but it's better then nothing. If your hair is long, pin it up and have your hubby help wash your back being careful to make no contact with the tape. Within a few days that stuff started to feel like it was peeling off; got to be VERY annoying. And from what I understand that is probably the most annoying thing after comparing notes with my friend who has a Medtronic unit, as well as my Rep.
 
For the first day expect to be sore. I found a pillow behind my back worked wonders. Put everything within easy reach so you don't have to stretch, and let your hubby pamper you! I was so grateful for my boyfriend spending those first four days with me.
 
I invested in a couple shelf bra tank-tops, and I got them a size small. It permitted me to wear something comfy without the need for a bra, and it helped keep my tape from trying to peel off. The tape /will/ shift during the course of the trial; do not be alarmed if it migrates a little. Hence the tank tops. I lived in those things! I'd wear one for a couple days then swap it out to wash it, and yes I wore them when I slept. Again, I did it to help protect the tape on my back.
 
The elastic band at your waist with your external unit gets annoying. You can wear it over your pants/jeans/sweats, but I found it easier to wear it just slightly above my clothes. Also, be prepared to not be able to tuck in shirts.
 
I'm sure your doctor has already asked you what side you sleep on perdominantly, the opposite side is where they should sit your unit. I know you don't have to take it off to sleep, but I found it more comfortable to disconnect and remove it at night. Just make sure you secure your wires either with a little medical tape or something so they don't flop around and produce a potential nocturnal hazard.
 
ALWAYS KEEP YOUR REMOTE WITH YOU! I don't care if you're going to the bathroom, take it! Remember your wires will probably be prone to shift, which means a sudden jump in the sensation, and sometimes that's not pleasant. In a pinch there should be a button on the unit you can press to turn it off if your remote takes to long to shut it off.
 
As the days go by you'll get more and more used to it, comfortable with the sensation, remote operation, everything. I know the further I got into my trial the more I was able to turn my unit up higher. If you're not getting good enough coverage call your Rep and let them know so they can see you ASAP to get the unit adjusted to give you the coverage you need. Your Rep should check in with you every day regardless. Make sure you take your antibiotics till they're all gone like a good girl; better safe then sorry.
 
Hmmm, I think that's it. I know you'll be scared, it's hard not to be. Those last minutes in the waiting room by myself were torturous. I sat there and cried, I was so scared. The unknown is always scary. You'll be okay though. *hug*
 
And remember, as annoying as the tape and wires, the sudden jolts (if you experience them, because mine were in my neck they had more room to wiggle around) the no showers and all the other little things ... just keep telling yourself "It's Just Temporary."  :-)   Before you know it it'll be over and you'll be having the temp wires removed. If about halfway through your trial you decide this is what you want, then maybe talk to your Rep and your Doctor and let them know, see what you can do to get a jump start on the process to get your permanent.
 
I'm excited for you! As scary as it was to get to that point, I remember how wonderful my life was with my temp unit. I really miss it most days.
 
If you have any questions don't hesitate to ask! I'll answer them to the best of my ability, but please keep in mind these are based on my point of view. What works for one person doesn't always work for another... but I'm gonna think real positive, and so are you.
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

stumped by pain
Regular Member


Date Joined Feb 2011
Total Posts : 23
   Posted 3/3/2011 4:23 PM (GMT -6)   
Thanks Rhaevin....
Thanks for sharing with me. I guess i got everything for the trail period. got the tank top shevle bras,slip on shoes.Compy clothes..

So guess now i just wait till next appt. see when we do this. thanks again.
hugs

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 3/5/2011 6:53 AM (GMT -6)   
Hi Stumped (and Rhaevin). I've had CRPS since 1999, so just wanted to say hi from another member of the 'CRaPS Club'. I've had my stim for nearly five years now, but most likely coming up for surgery number five on it sometime soon because my lead has migrated again...

The only thing I can't see Rhaevin having mentioned is beware when you're coughing or sneezing, just because that is something else I found could really increase the intensity and make you get jolted. I had forgotten about having to carry that remote everywhere just in case of jolts - I now just keep a small powerful magnet and keeper in my pocket.

So anyway Stumped - all the very best with your trial. I truly hope that things go well for you and that it brings you some much-needed relief.

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 3/5/2011 10:07 AM (GMT -6)   
CRPSpatient -- It's always wonderful to meet another person with this rare and unhappy disease! Makes me feel a little less alone in the world.
 
You're right, I didn't even think about that as I didn't sneeze or cough while I had mine.
 
I'm not sure if you have a Medtronic or a Boston Scientific PP unit, but I know one of the things they mentioned to me was the new leads they have now that have like lil paddles on the end. From what I understand I believe the odds of having them remove your old leads to insert new ones are slim, however what about possibly tacking them down? That's another technique they're doing now and it does greatly reduce lead migration. Perhaps it'd be something to discuss with your doctor before you go in for a surgery.
 
Stay in touch and don't be a stranger!!

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 3/5/2011 11:04 PM (GMT -6)   
Hi Rhaevin,

It is nice to meet other people with this, though always sad to know that someone else is going through the same pain. I don't know what the etiquette here is about posting other sites, but if the mods have no objection I can post a couple of good CRPS support groups - if you're interested?

My unit is the Eon Rechargeable made by St Jude/ANS. You obviously saw my other topic about leads and stuff. Ididn't know about the difference in leads between the three systems...the main reason my original doctor chose the St Jude/ANS for me was that at the time (2006) he felt it was the best in terms of battery life and the like. The leads we're looking at at the moment are interesting - they are a proper paddle electrode, but unlike most paddles don't require a laminectomy for placement. I'm thinking this is going to be the way I go as I really don't want to be going back for more revisions - especially as my CRPS affects my back as well. I have a pump as well, so I've had that small area opened up many times before and have a lot of problems now with scar tissue.

Stumped - my apologies for hijacking your thread.

Laura

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 3/6/2011 12:12 PM (GMT -6)   
Laura,

You can always email me the link to the CRPS site; as that would be helpful. I love my family here immensely, but would like to expand it to include more people suffering with what we have ... to help those who have just learned what they have ... and hopefully still have the chance to reverse it ... to those who have dealt with it a lot longer so I can get a better idea of what my life ahead of me will look like.
 
As I said in the other thread, more info about the paddles not requiring the laminectomy would be helpful; that's probably a good chunk of the reason my surgery is being suspended is the risks of doing that sort of procedure in the neck. Either way it sounds like the way to go!
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
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