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 10-28-2009, 04:45 PM #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 Yeah, I'm getting the pain pump trial

I'm sooooo happy. The drs. today said I could do the pain pump trial. I'm beyond happy. It took over 2 hrs of talking to drs, nurses, examines, reviewing my records from the other drs. and a floriscope of my back to see if it could be done. I got the ok. the only hitch is that because I throw infections if you even look at me wrong, I've got to get with an infections disease dr. (of which I have one) and start on antibodicts. I should get the trial with in the next 2 wks. I'll be in the hosptial for 4 days attached to a cather in my spine and an external pump. they will be trying several cocktails of meds to try and see what works. Once the perm is in and I've healed, I can go back to horseback riding, almost anything. i see the light at the end of the tunnel, and I want to run as fast as I can to get there.

A pain pump is a device where the resivoire that holds pain meds is implanted into your belly, then you have a very thin flexable tube that is connected to the pump, and that tube runs to your back, under the skin, and is implanted directly into your spinal fluid. the meds that are in there are several types and combinations. It's what works best for you, and it take a bit to find that out. By using the pain pump you only require 1/300's of the dose of meds that you are taking orally. it only is put into your spinal fluid, so it doesn't get to the rest of the body to cause the symptoms that we all suffer from, sleepyness, memory loss, etc. The healing is the same as for the scs, but you don't have the same restrictions later after you heal. You don't have to worry about the leads being pulled out. and the cather is placed low in the spine so you don't have a lot of wires and all that are inflexable. I'm so happy. I'll have an metronics unit. You do have to have the pump refilled which is done with a needle thru the belly to the pump, but it is just directly under the skin. It's not the prettiest thing out there, but I don't care. My activity level is more important then ever wearing a skin tight outfit. I'm to old for that anyway.lllooolll

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 (10-28-2009), bassman (10-29-2009), Sandel (10-28-2009)

advertisement
Old 10-28-2009, 07:53 PM #2
AintSoBad AintSoBad is offline
In Remembrance
 
Join Date: Mar 2009
Location: Eastern PA.
Posts: 1,143
15 yr Member
AintSoBad AintSoBad is offline
In Remembrance
 
Join Date: Mar 2009
Location: Eastern PA.
Posts: 1,143
15 yr Member
Default

Thanks Mary,
for the little education on that pump!
I know how important your outdoor activity is to you, and look forward to when you can get to it!

Be well!

Pete
AintSoBad is offline   Reply With QuoteReply With Quote
Old 10-28-2009, 11:40 PM #3
ams0310 ams0310 is offline
Junior Member
 
Join Date: Jan 2009
Posts: 33
15 yr Member
ams0310 ams0310 is offline
Junior Member
 
Join Date: Jan 2009
Posts: 33
15 yr Member
Default

Mary,

I hope that everything goes well for you!

I had this in for 2 months and it was nice.

Good luck!

Awna
ams0310 is offline   Reply With QuoteReply With Quote
Old 10-29-2009, 07:00 AM #4
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

Quote:
Originally Posted by ams0310 View Post
Mary,

I hope that everything goes well for you!

I had this in for 2 months and it was nice.

Good luck!

Awna
Do you mind if I ask why you only had tis in for 2 months? did you have problems?. Please let me know. I know the risks, I did have 2 scs and the battery moved in my butt, the leads migrated away, had it removed, a new one implanted. spinal bones broken to place the paddle, within 2 wks I was in ER scheduled for suregery tohave it out. I developed MRSA under the battery. No one believed how bad I felt or how painful my side was. Ended up in Nursing home, depressed, hsyterical. (didn't want to be there. there were too many people dying and it smelled horrible, but it was clean). 3 mo on picc line, 2 more infections with those, etc etc. it goes on and on. please let me know

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 10-29-2009, 08:16 PM #5
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

no word today from the surgeon about the date to get the pain pump. I know.. I should have patience, but now that i've decide that it's the way to go, I'm so happy I really want it done, like maybe yesterday.lol I can't wait to get my life back and get back on my horses. With the pump I can. Needless to say I'll be on here as soon as the dr calls. He said it should be a week or so...I've sent him a copy of my last psych exam, just incase he needs it. Also spoke to my ID dr. who said she didn't think I needed antibodicts before surgery, but if the dr. wanted me to have them he could order them. I call his office and left the message on the machine. I really want it in...I want to start healing and then start going like I did before. This is worse the Christmas as a kid.

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 10-29-2009, 08:31 PM #6
Jennelle Jennelle is offline
Member
 
Join Date: Mar 2009
Location: Washington
Posts: 100
15 yr Member
Jennelle Jennelle is offline
Member
 
Join Date: Mar 2009
Location: Washington
Posts: 100
15 yr Member
Default pumps

Hope the pump works well for you... I hear good things about it! What kind of infections do you get? They can give you antibiotics pre-op and after for infections. I am a nurse and we see people for lots of infections....I know that people with rsd often have lowered immune systems. I know I get sick a lot easier now. Good luck to you I hope it works great!!!
Jennelle
Jennelle is offline   Reply With QuoteReply With Quote
Old 10-29-2009, 09:11 PM #7
ams0310 ams0310 is offline
Junior Member
 
Join Date: Jan 2009
Posts: 33
15 yr Member
ams0310 ams0310 is offline
Junior Member
 
Join Date: Jan 2009
Posts: 33
15 yr Member
Default

Don't mind at all Mary

I ended up getting an infection so we decided it was time to take it out.

I had to keep having the doses up'd as well, I tend to become pretty tolerant of meds. Just like now, with the oxycontin, I started out on 10's of course and have now qorked my way up to 180mg a day. I hate it too just because of the looks that I get from the pharmacists and staff at the store and of course when I call to get scripts. Oh well, what can I do, right?

I did get a SCS put in last month. Not too sure how I feel about it. My hip is killing me, all the time. Every time I call or say anything they tell me to just give it time, it has only been 4 weeks post op...that I need to try a few more times of changing the settings. URG!!! I just feel like something isn't right. The trial went so smooth, It really was wonderful. This is miserable.

Dr. is thinking that the lead has moved. Plus to top it off I ended up stubbing my toe (where RSD orig. started) then fell tonight, landing on the hip that has the battery in it....needless to say I have been up to take a hot shower & that is it!

I can totally see where you could have been inpatient due to the depression, hysteria and even more...I can seriously feel it coming on....

Good luck with the pump, please, keep us posted!!!!
ams0310 is offline   Reply With QuoteReply With Quote
Old 10-29-2009, 10:03 PM #8
angelrsd's Avatar
angelrsd angelrsd is offline
Member
 
Join Date: Dec 2008
Location: murfreesboro tn
Posts: 500
15 yr Member
angelrsd angelrsd is offline
Member
angelrsd's Avatar
 
Join Date: Dec 2008
Location: murfreesboro tn
Posts: 500
15 yr Member
Default

so happy that you will have a chance at lower pain mary.. just know that it is a mjor surgery i am like you and get infections if you say boo. make sure they use strong antibiocs. and make sure that you really chart your pain in the trial. and always know that they can change meds at a drop of the hat if you have issues. i have had mine for 5+ years and wouldnt have it any other way. hope goes well and let us know..

carrie
__________________
hope this finds all in less pain
.



rsd DX 99 had since 98 full body and organ involement,fibro ,pelvic pain ,etc,,,,,,




please check out our website to help bring awareness to RSD!


.
angelrsd is offline   Reply With QuoteReply With Quote
Old 10-31-2009, 09:16 PM #9
ALASKA MIKE ALASKA MIKE is offline
Member
 
Join Date: Apr 2009
Location: Alaska
Posts: 158
15 yr Member
ALASKA MIKE ALASKA MIKE is offline
Member
 
Join Date: Apr 2009
Location: Alaska
Posts: 158
15 yr Member
Default

Good luck to you,

mike


Quote:
Originally Posted by lostmary View Post
I'm sooooo happy. The drs. today said I could do the pain pump trial. I'm beyond happy. It took over 2 hrs of talking to drs, nurses, examines, reviewing my records from the other drs. and a floriscope of my back to see if it could be done. I got the ok. the only hitch is that because I throw infections if you even look at me wrong, I've got to get with an infections disease dr. (of which I have one) and start on antibodicts. I should get the trial with in the next 2 wks. I'll be in the hosptial for 4 days attached to a cather in my spine and an external pump. they will be trying several cocktails of meds to try and see what works. Once the perm is in and I've healed, I can go back to horseback riding, almost anything. i see the light at the end of the tunnel, and I want to run as fast as I can to get there.

A pain pump is a device where the resivoire that holds pain meds is implanted into your belly, then you have a very thin flexable tube that is connected to the pump, and that tube runs to your back, under the skin, and is implanted directly into your spinal fluid. the meds that are in there are several types and combinations. It's what works best for you, and it take a bit to find that out. By using the pain pump you only require 1/300's of the dose of meds that you are taking orally. it only is put into your spinal fluid, so it doesn't get to the rest of the body to cause the symptoms that we all suffer from, sleepyness, memory loss, etc. The healing is the same as for the scs, but you don't have the same restrictions later after you heal. You don't have to worry about the leads being pulled out. and the cather is placed low in the spine so you don't have a lot of wires and all that are inflexable. I'm so happy. I'll have an metronics unit. You do have to have the pump refilled which is done with a needle thru the belly to the pump, but it is just directly under the skin. It's not the prettiest thing out there, but I don't care. My activity level is more important then ever wearing a skin tight outfit. I'm to old for that anyway.lllooolll

hugs
Mary
ALASKA MIKE 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
Pain Pump Question AJSG Reflex Sympathetic Dystrophy (RSD and CRPS) 2 07-14-2009 07:15 PM
OK...after the scs...thinking about pain pump... lostmary Reflex Sympathetic Dystrophy (RSD and CRPS) 5 02-03-2009 04:16 PM
Pain pump frogga Reflex Sympathetic Dystrophy (RSD and CRPS) 3 09-27-2007 03:23 PM
pain pump AJSG Reflex Sympathetic Dystrophy (RSD and CRPS) 12 03-13-2007 12:12 PM
Arachnoiditis and Pain Pump ?????? Junie Spinal Disorders & Back Pain 2 10-12-2006 05:44 PM


All times are GMT -5. The time now is 01:38 AM.

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.