NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   I got the pump on Tuesday (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/112855-pump-tuesday.html)

debbiehub 01-22-2010 10:29 PM

Great!
 
Hi Mary- So glad to hear this! What pain meds can they put in the pump- is it just dilaudid?
Debbie

lostmary 01-23-2010 04:08 PM

Thank you all for everything. I'm still doing great. A little sore at the surgical site in my back. I'm pretty swollen and tender, but for the first time, I'm sitting up (kinda) in bed. My rsd pain is still almost all gone. When I think back to the 2 stims I had implanted, the recovery was so painfull and horrible for several weeks after the surgery. I'm ready to almost get up and get going. I'll have to buy largers waist pants for now. It could take almost 6 months for the swelling to go down. till then, scrubs and sleep pants are the order for me. lol. I feel as warm and content as I did after I had my girls. I just didn't know I could feel this wonderful again. I wish I could explain it better but I don't have the words. I'll keep you updated on how I am doing, and if anyone wants more information feel free to ask here or pm me or email. I signed up with the hospital to be a person people can talk to who are interested in the pump. I'll tell you the good, bad and ugly. Nothing is perfect. I know I will never wear a bikini again. :eek:...lol...lol..just the thought of it scares me. hubby is running for the hills :yikes::yikes:
hugs
Mary

rsdwife 01-23-2010 11:58 PM

I can't even tell you how deeply happy I am for you! Please keep us update!

finz 01-26-2010 07:40 AM

I am so happy for you that you are getting some relief !

Do you mind me asking......How did the process go looking for a doc in another state to implant the pump ? How will you be able to get it refilled ?

lostmary 01-26-2010 08:15 AM

finz,

Very good questions. I started calling PM drs. in my area and asking if they did the pump. They all said no, but eventually I found one that could recommend a dr. that did it. Wait. I also called all hospitals in the area asking the same thing. I also checked the metronics web sit, got a list of drs that implant for them. Then it was a matter of calling and asking. Most said NO, and they didn't know anyone who did. Then I called out a larger area and someone knew someone who did it. Then I had to get my current pcp and pm dr to fax info to him. HE reviewed it then we made an appt. then it was a short time to the trial, then the pump. I know there is a dr. closer to me that does refills, but with the larger 40mg pumps, it only needs to refilled every128 days, I don't mind a drive there and back every 4 months or so. That's only 3 visits a year. Also, some home agencies are doing home infusion, so that is the way I will try to go when I get to where I need to be with the meds. This is one reason that a lot of drs. don't want to do the pump, just the stimulator. With the pump they have to work with your for the rest of your life. Also, if you are interested, pm me and I'll give you a link to a group that is for the pump perple. THey carry a good dr.bad dr list. So they might have drs. in your state.

I love it!!!!!!!

Hugs
Mary

Jimking 01-26-2010 10:23 AM

Thanks for the info LM. Very interesting about the refills and stimulator. Please keep us posted! My wife has RSD and is very reluctant to have any kind of evasive procedure performed but this may sway her down the road and we are in the DC area so the distance to Maryland is very convenient. :D:D

lostmary 01-26-2010 07:35 PM

Jimking

I hope your wife would consider it. Pm me for the name of the hospital in silverspring that does it. It's sooooo much better then taking oral drugs. Everything in the pump is delivered at about 1/300 of an oral dose. and as it stays in the spinal fluid, coating the inflamed nerve endings, it doesn't go thru the rest of the body messing with your different organs. I'm taking percs for pain, but that is post surgery pain, which isn't bad at all. I've been getting up and moving around since the day after surgery. For the first couple of days my back was tender, but now I can walk around, standing straight up, and there is very very little pain. Most of it now is because of the staples in the back. The incision is only about 4 maybe 5 inches long and it was made in my back where I had been opened up before for the 2 scs. I wish I had never had the stims put in. they did more damage than good. but you know, hindsight is 20/20. lol
this gives me the relief of the oral meds but no side effects. It is the best of both worlds. I'll be able to drive again, and I'm planning on going back to work part time in about 6 wks. When I got the scs I was still in bed crying a week after surgery. Here I am feeling as if, for the first time in many years, I'm clear headed, alert, bright, I've got a my humor back, most of my body is working like it's suppose to. I'm planning on riding my horses by summer. Even tho I feel so great, I have to hold myself back not to bend, twist, reach, carry anything heavier then 5 lbs, etc.
You can pm me or have your wife do that, if she would like to talk.

Hugs
Mary

SandyRI 01-26-2010 08:14 PM

Dear Mary,

I am so glad things continue to go well for you!! My doctor says that at 49 I am too young to consider an implanted pain pump....but you make me want to consider it anyway!

XOXOX Sandy

lostmary 01-27-2010 08:39 AM

let me post that question on my pump group. It's a group who's members all have the pump or are getting it. I know that there are quite a few ppl there that are in their 40's. Others have been told the same thing before they got their pump. Let me see what they say are the main objections. There are actually kids with the pump. If you want you can pm me and I'll give you the groups info, you can join, and talk to others. One thing about the group, they give you the good, bad and ugly. (did I mention that the resivoir is just under the skin which means you can see it. it does stick out a little bit) lol.
I'm willing to give you all the info you need. For what it's worth, in my area, NO ONE wanted to put in the pump. they said it a waste. Well, they just didn't want the commitment that a dr has to give his patient for as long as you have the pump. when I had the scs, the dr. put it in, and handed me over to the rep from the company. I saw dr again in the operating room almost 3 wks later. Why? I picked up a MRSA and the rep didn't recognize it. pm me for more info.


All times are GMT -5. The time now is 11:15 AM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.