Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


advertisement
Reply
 
Thread Tools Display Modes
Old 02-03-2010, 08:27 AM #1
lostmary's Avatar
lostmary lostmary is offline
Member
 
Join Date: Apr 2007
Location: fredericksburg, Virginia
Posts: 459
15 yr Member
lostmary lostmary is offline
Member
lostmary's Avatar
 
Join Date: Apr 2007
Location: fredericksburg, Virginia
Posts: 459
15 yr Member
Default 1st post op appt with the pump

Good morning everyone.
I just had my 1st post op appt with my PM clinic at the hospital. THey took the staples out. It wasn't as bad as I feared. I'm such a coward that I was almost in tears thinking about it. Anyway. they were great about it and this group is great. THey upped my pump meds by 10% and added bacefalone sp, for the spases and twitches. Took it last night as for the first time I didn't twitch and jump all night. I'm more then in love with my pump. When I go back next month, as I seem to be having such a great result, they can add it to my pump instead of oral meds. they checked the pump, did a new print out of the meds, etc, and checked everything. With this group, all the nurses specialize in PM. I was talking to the nurse about rsd, and she was amazing. She talked about jerks, twitches, memory loss, and about bone loss and how horrible it is when it starts to spread. I didn't have to explain anything. I think I've died and gone to heaven...lol..I wish I could give everyone the great pain relief and brain relief that I'm getting from the pump. My brain is so clear, I've even started to laugh at things again. I know I'm gushing, but I can't believe it. I wish I had know about this and I had worked more at finding a dr. that will do this, long before I had so many other things done that just made it worse. any questions PM me.

Hugs
Mary
__________________
There is no future, there is no past, we must make each moment last
lostmary is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AintSoBad (02-03-2010), dreambeliever128 (02-03-2010), Enna70 (09-22-2015), hope4thebest (02-03-2010), Inspiretoday (09-23-2015), SandyRI (02-03-2010), SandyS (02-03-2010)

advertisement
Old 02-03-2010, 08:50 AM #2
SandyRI SandyRI is offline
Senior Member
 
Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
SandyRI SandyRI is offline
Senior Member
 
Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
Default Awesome...

That's great Mary!!
SandyRI is offline   Reply With QuoteReply With Quote
Old 02-03-2010, 08:54 AM #3
keep smilin keep smilin is offline
Member
 
Join Date: Aug 2009
Posts: 851
15 yr Member
keep smilin keep smilin is offline
Member
 
Join Date: Aug 2009
Posts: 851
15 yr Member
Thumbs up

Quote:
Originally Posted by SandyRI View Post
That's great Mary!!
Mary.... You are our inspiration... keep moving forward in feeling the best possible!!! Bless you.

KS
keep smilin is offline   Reply With QuoteReply With Quote
Old 02-03-2010, 12:03 PM #4
daniella daniella is offline
Magnate
 
Join Date: May 2007
Posts: 2,998
15 yr Member
daniella daniella is offline
Magnate
 
Join Date: May 2007
Posts: 2,998
15 yr Member
Default

I read your other post too about the pump and I am so happy for you. I hope it continues. Many happy and pain free thoughts
daniella is offline   Reply With QuoteReply With Quote
Old 02-03-2010, 06:15 PM #5
SandyS SandyS is offline
Member
 
Join Date: Jan 2009
Location: Tampa, Fl.
Posts: 409
15 yr Member
SandyS SandyS is offline
Member
 
Join Date: Jan 2009
Location: Tampa, Fl.
Posts: 409
15 yr Member
Default

You are sooooo funny Mary! It is so nice to hear that you are doing so well...
I am praying for you kiddo.

Sandy

Quote:
Originally Posted by lostmary View Post
Good morning everyone.
I just had my 1st post op appt with my PM clinic at the hospital. THey took the staples out. It wasn't as bad as I feared. I'm such a coward that I was almost in tears thinking about it. Anyway. they were great about it and this group is great. THey upped my pump meds by 10% and added bacefalone sp, for the spases and twitches. Took it last night as for the first time I didn't twitch and jump all night. I'm more then in love with my pump. When I go back next month, as I seem to be having such a great result, they can add it to my pump instead of oral meds. they checked the pump, did a new print out of the meds, etc, and checked everything. With this group, all the nurses specialize in PM. I was talking to the nurse about rsd, and she was amazing. She talked about jerks, twitches, memory loss, and about bone loss and how horrible it is when it starts to spread. I didn't have to explain anything. I think I've died and gone to heaven...lol..I wish I could give everyone the great pain relief and brain relief that I'm getting from the pump. My brain is so clear, I've even started to laugh at things again. I know I'm gushing, but I can't believe it. I wish I had know about this and I had worked more at finding a dr. that will do this, long before I had so many other things done that just made it worse. any questions PM me.

Hugs
Mary
SandyS is offline   Reply With QuoteReply With Quote
Old 02-03-2010, 11:08 PM #6
debbiehub debbiehub is offline
Member
 
Join Date: Oct 2006
Location: Long Island NY
Posts: 765
15 yr Member
debbiehub debbiehub is offline
Member
 
Join Date: Oct 2006
Location: Long Island NY
Posts: 765
15 yr Member
Default Hi

It great you are doing so well. Can you explain more about the pump- I thought they could only put one type of morphine in the pump but sounds like they can do more??

Thanks for any info

Debbie
debbiehub is offline   Reply With QuoteReply With Quote
Old 02-04-2010, 08:16 AM #7
lostmary's Avatar
lostmary lostmary is offline
Member
 
Join Date: Apr 2007
Location: fredericksburg, Virginia
Posts: 459
15 yr Member
lostmary lostmary is offline
Member
lostmary's Avatar
 
Join Date: Apr 2007
Location: fredericksburg, Virginia
Posts: 459
15 yr Member
Default

Debbie,

The pump delivers your pain meds, via cathier, to the spinal fluid. THe amt of meds delivered is abt 1/300 of your reg. meds. As it goes right into the spinal fluid, it doesn't effect the rest of your body and organs. As it in the fluid, basically, (and this is a really simple analogy), what happens are that the inflamed nerves are coated by the meds and there isn't enough to touch the uninflamed nerves. That way, it bypasses the rest of the body. I'm in love with it. I'm taking Perc for the surgical pain, but I took my last pain pill (Opana 30mg ER) the night before surgery. nothing orally since then. No withdrawal from not taking oral meds. Amazing. THey usually start with morphine in the pump, but During the trial, we discovered I was allergic to it. Do they moved me to Diluidad, which has no effect on me at all. Nothing..THere is a resivoir that is placed under your skin, (mine is in my back), and they do have to refill it with meds. Mine will get its first refill in May. they do that my inserting a steril needle into the resivoir, withdrawing the old meds, measuring the amt removed, and then using another needle, add the new meds. I can ride my horses again, after I heal. lol
I had the scs, infact, 2. They caused my rsd to spread. Now if it does spread the pump takes care of it. As the nerves become affects by rsd, the meds are in the spinal fluid to take care of it. How great is that? lol.
The recovery has been fine, no major problems or pain. You may have to look for a dr to do it tho. I have found one in another state. Its a 3 hr drive on way. but it is worth it. Now this dr and his staff are going to be together for quite a long long time. unlike the scs where after surgery the dr hands you over to a company rep who takes over the scs. I like my dr. taking care of me. If you want more info, pm me and I'll give you more info.

Hugs
Mary
__________________
There is no future, there is no past, we must make each moment last
lostmary is offline   Reply With QuoteReply With Quote
Old 02-05-2010, 10:16 AM #8
ali12's Avatar
ali12 ali12 is offline
Magnate
 
Join Date: Jul 2007
Location: Yorkshire, UK
Posts: 2,463
15 yr Member
ali12 ali12 is offline
Magnate
ali12's Avatar
 
Join Date: Jul 2007
Location: Yorkshire, UK
Posts: 2,463
15 yr Member
Heart

SO happy to hear that you are doing well after the op, Mary and that your pain has lowered a lot - you soo deserve it after everything you have been through!!!!

I hope things continue to improve for you and that you are able to live the pain-free life you deserve and can get back to your horesriding!

Best wishes,
Alison
__________________
To the World you may be one person, but to one person, you may be the World.
ali12 is offline   Reply With QuoteReply With Quote
Old 02-06-2010, 12:11 AM #9
hipnochik hipnochik is offline
Junior Member
 
Join Date: Nov 2009
Location: Alberta, Canada
Posts: 10
10 yr Member
hipnochik hipnochik is offline
Junior Member
 
Join Date: Nov 2009
Location: Alberta, Canada
Posts: 10
10 yr Member
Default 1st post visit

Congrats, Mary!

I'm new here and it is great to hear about a positive procedure and that, yes, things can get better!
Thanks for sharing and giving me much-needed boost of hope!


kelly
hipnochik is offline   Reply With QuoteReply With Quote
Old 09-22-2015, 03:32 AM #10
gigisteyer gigisteyer is offline
Junior Member
 
Join Date: Jul 2015
Location: Redwood City, CA
Posts: 8
8 yr Member
gigisteyer gigisteyer is offline
Junior Member
 
Join Date: Jul 2015
Location: Redwood City, CA
Posts: 8
8 yr Member
Unhappy Questions about the pump

Hello,
I only just now saw your posts about this pump. Do you know if a person can have a spinal cord stimulator, and still get a pump? By the way, you mention scs - is that short for spinal cord stimulator? I have a spinal cord stimulator, and it is targeted for my lower half. I now have an upper body flare (in my shoulders) and can barely do anything with my arms. I can only feed myself, dress myself, and do basic hygiene. I can't drive, cook, clean, do laundry, or much else. It's so awful not being able to take my kids anywhere! I've been like this for 5 months, with no improvement, unable to do PT. Thank God for my almost 13-year-old twins (girls) and my husband. How invasive is the procedure to put in the pump? Were you sedated, and did you have to stay overnight in the hospital? Does the pump stick out, or need to have batteries charged, or anything like that? Oh, I also have been in a wheelchair for 12 years, and I'm thinking maybe a pump would help with my lower half as well. I would like to be able to use my arms again, and walk, and not be a useless blob. Thanks for your help. Gigi

Quote:
Originally Posted by lostmary View Post
Debbie,

The pump delivers your pain meds, via cathier, to the spinal fluid. THe amt of meds delivered is abt 1/300 of your reg. meds. As it goes right into the spinal fluid, it doesn't effect the rest of your body and organs. As it in the fluid, basically, (and this is a really simple analogy), what happens are that the inflamed nerves are coated by the meds and there isn't enough to touch the uninflamed nerves. That way, it bypasses the rest of the body. I'm in love with it. I'm taking Perc for the surgical pain, but I took my last pain pill (Opana 30mg ER) the night before surgery. nothing orally since then. No withdrawal from not taking oral meds. Amazing. THey usually start with morphine in the pump, but During the trial, we discovered I was allergic to it. Do they moved me to Diluidad, which has no effect on me at all. Nothing..THere is a resivoir that is placed under your skin, (mine is in my back), and they do have to refill it with meds. Mine will get its first refill in May. they do that my inserting a steril needle into the resivoir, withdrawing the old meds, measuring the amt removed, and then using another needle, add the new meds. I can ride my horses again, after I heal. lol
I had the scs, infact, 2. They caused my rsd to spread. Now if it does spread the pump takes care of it. As the nerves become affects by rsd, the meds are in the spinal fluid to take care of it. How great is that? lol.
The recovery has been fine, no major problems or pain. You may have to look for a dr to do it tho. I have found one in another state. Its a 3 hr drive on way. but it is worth it. Now this dr and his staff are going to be together for quite a long long time. unlike the scs where after surgery the dr hands you over to a company rep who takes over the scs. I like my dr. taking care of me. If you want more info, pm me and I'll give you more info.

Hugs
Mary
gigisteyer is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Duodopa pump: anyone know anyone who has gotten pump? leonore Parkinson's Disease Clinical Trials 21 04-26-2012 09:43 PM
Baclofen Pump? Phyxius Traumatic Brain Injury and Post Concussion Syndrome 0 01-02-2010 09:44 PM
Pain pump frogga Reflex Sympathetic Dystrophy (RSD and CRPS) 3 09-27-2007 03:23 PM
Alan is getting a Pump!!! MelodyL Peripheral Neuropathy 26 06-16-2007 12:14 PM
Baclofen Pump spoons Multiple Sclerosis 8 10-16-2006 05:53 PM


All times are GMT -5. The time now is 07:33 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.