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 07-13-2016, 08:07 PM #1
PurpleFoot721's Avatar
PurpleFoot721 PurpleFoot721 is offline
Member
 
Join Date: Sep 2015
Location: Near Oscoda Michigan
Posts: 469
8 yr Member
PurpleFoot721 PurpleFoot721 is offline
Member
PurpleFoot721's Avatar
 
Join Date: Sep 2015
Location: Near Oscoda Michigan
Posts: 469
8 yr Member
Default Going for SCS tomorrow

Hi all,

I have not been posting all that much lately, but I do still drop in from time to time just to see how some of you are doing.

Tomorrow is a big day for me and I decided that it was a good time to share with everyone again. I will be going in to my PM doctor tomorrow at 6:45 in the morning to begin my trial with the SCS. I am quite nervous about the whole thing with the big concern of the possibility of the CRPS spreading, or getting worse. I have had a long time to think about this and have put it off 3 times so far for one reason or another, whether it was insurance problems, depression, not yet ready and so on. Well, it is finally time to take the chance and at least see if it can help me enough to decided to go ahead with the permanent implanted device, or find another treatment. Perhaps look into a new treatment similar to the SCS called a DRG stimulator that a good friend had recently mentioned to me, but that is getting ahead of myself. I am going to try to stay positive and hope that this gets me to a more comfortable level where I won't have to worry about what treatment is next.

I will try to keep you all posted in this coming week during my trial to let you know how I am doing.

Take Care,
__________________

.

Alaina
PurpleFoot721 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
BioBased (07-14-2016), CRPSbe (07-14-2016), ger715 (07-22-2016), RSD ME (07-26-2016), St George 2013 (07-21-2016), zinnia (07-14-2016)
Old 07-14-2016, 06:57 AM #2
CRPSbe's Avatar
CRPSbe CRPSbe is offline
Member
 
Join Date: Mar 2009
Location: Belgium, Europe
Posts: 832
15 yr Member
CRPSbe CRPSbe is offline
Member
CRPSbe's Avatar
 
Join Date: Mar 2009
Location: Belgium, Europe
Posts: 832
15 yr Member
Default

Quote:
Originally Posted by PurpleFoot721 View Post
Hi all,

I have not been posting all that much lately, but I do still drop in from time to time just to see how some of you are doing.

Tomorrow is a big day for me and I decided that it was a good time to share with everyone again. I will be going in to my PM doctor tomorrow at 6:45 in the morning to begin my trial with the SCS. I am quite nervous about the whole thing with the big concern of the possibility of the CRPS spreading, or getting worse. I have had a long time to think about this and have put it off 3 times so far for one reason or another, whether it was insurance problems, depression, not yet ready and so on. Well, it is finally time to take the chance and at least see if it can help me enough to decided to go ahead with the permanent implanted device, or find another treatment. Perhaps look into a new treatment similar to the SCS called a DRG stimulator that a good friend had recently mentioned to me, but that is getting ahead of myself. I am going to try to stay positive and hope that this gets me to a more comfortable level where I won't have to worry about what treatment is next.

I will try to keep you all posted in this coming week during my trial to let you know how I am doing.

Take Care,
I've never heard that a SCS can actually "help" with the signs & symptoms from RSD/CRPS. It lessens the pain, if you're lucky, but that's about it. It's not actually considered treatment of CRPS, where I live at least.
__________________
All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
CRPSbe is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
BioBased (07-14-2016), ger715 (07-22-2016), PurpleFoot721 (07-14-2016), RSD ME (07-26-2016), St George 2013 (07-21-2016)
Old 07-14-2016, 08:43 AM #3
zinnia zinnia is offline
Member
 
Join Date: Nov 2015
Posts: 126
8 yr Member
zinnia zinnia is offline
Member
 
Join Date: Nov 2015
Posts: 126
8 yr Member
Default

Keeping you in my thoughts and prayers (((((((Alaina))))))) Thanks for the update.
peace
zinnia
zinnia is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
BioBased (07-14-2016), ger715 (07-22-2016), PurpleFoot721 (07-14-2016), RSD ME (07-26-2016), St George 2013 (07-21-2016)
Old 07-14-2016, 05:02 PM #4
Littlepaw's Avatar
Littlepaw Littlepaw is offline
Senior Member
 
Join Date: Nov 2014
Posts: 1,537
8 yr Member
Littlepaw Littlepaw is offline
Senior Member
Littlepaw's Avatar
 
Join Date: Nov 2014
Posts: 1,537
8 yr Member
Heart

Dear Alaina,

I know many healing thoughts are coming your way from the group. You are being carried in our hearts and surrounded by wishes for relief and restoration.

Be extra gentle with yourself and take good care. Though you are anxious (who wouldn't be) try to keep stress down and spirits up. Hitting the Vit C 500mg a day right now might not be a bad idea either.

I sincerely hope the SCS starts the pendulum swinging in the other direction so you can start to heal and put a little more weight on that purple foot of yours. This was not an easy decision, but you made it after careful consideration for what was best for you and I respect your strength and courage.

My PM had mentioned once about the SCS improving circulation and I had wondered about this effect. This article from 2013 about SCS in limb ischemia sums it up nicely in the abstract paragraph so no need to read the whole thing. Basically decreased sympathetic activity and improved microcirculation resulting from the SCS lead to improved outcomes and limb salvage for vascular patients. Maybe you will get this effect AND decreased pain transmission. That would be great!

Spinal Cord Stimulation for Chronic Limb Ischemia


Okay enough technical stuff. Be well and let us know what happens. We are with you.
__________________
Littlepaw

Shine Your Bright Light
Littlepaw is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
BioBased (07-14-2016), ger715 (07-22-2016), PurpleFoot721 (07-15-2016), RSD ME (07-26-2016), St George 2013 (07-21-2016)
Old 07-14-2016, 11:06 PM #5
catra121's Avatar
catra121 catra121 is offline
Senior Member
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
catra121 catra121 is offline
Senior Member
catra121's Avatar
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
Default

Just saw this now...but I hope everything went well today. Keep us posted on how things are going. I know the decision to move forward with this treatment is a difficult one given that there are both positive and negative experiences out there...but I really hope that you are able to get some pain relief from it and that it works out for you. We are all different and have to decide for ourselves what treatments are worth trying based on all the various risks...you obviously know this and have not made the decision lightly. I will send good thoughts your way and hope that this will finally give you the relief you need from the pain of this horrible condition. Hugs.
catra121 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
BioBased (07-15-2016), PurpleFoot721 (07-15-2016), RSD ME (07-26-2016), St George 2013 (07-21-2016), zinnia (07-17-2016)
Old 07-16-2016, 06:08 PM #6
PurpleFoot721's Avatar
PurpleFoot721 PurpleFoot721 is offline
Member
 
Join Date: Sep 2015
Location: Near Oscoda Michigan
Posts: 469
8 yr Member
PurpleFoot721 PurpleFoot721 is offline
Member
PurpleFoot721's Avatar
 
Join Date: Sep 2015
Location: Near Oscoda Michigan
Posts: 469
8 yr Member
Default

Thank you all for the encouragement.

I have been rather sore these past couple of days following the procedure but I am trying to remain hopeful.

I am a little upset with my PM doctor. Having the SCS leads put into place caused a rather bad flare in both of my legs. I have had symptoms in both, but for the most part, the worst of it was mainly in my right foot up to a little above my ankle until the leads were put in. I have left several messages for my PM doctor, but still have not had a return call. I did speak with the on call doctor earlier today. She was going to try to contact my PM doctor, but gave me the ok to continue on with the therapy how ever my representative feels comfortable doing so. This afternoon, we increased the program level for the first time.

So far, I am not very happy with the way things are going. My pain level is higher than before the leads were put in, but on the positive side, I can touch my foot for the first time since last January. Hopefully this flare will calm down some and I can start doing some physical rehabilitation.
__________________

.

Alaina
PurpleFoot721 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
catra121 (07-16-2016), CRPSbe (07-17-2016), ger715 (07-22-2016), RSD ME (07-26-2016), shelbie4u (07-17-2016), St George 2013 (07-21-2016), zinnia (07-17-2016)
Old 07-16-2016, 08:44 PM #7
catra121's Avatar
catra121 catra121 is offline
Senior Member
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
catra121 catra121 is offline
Senior Member
catra121's Avatar
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
Default

I hope the flare up passes quickly for you. While I do not have a SCS...I do know that for me any kind of trauma usually causes at least several days of flare up so hopefully you'll be better soon. Hugs...really hoping this works for you. The reduced sensitivity in the foot is a good thing so I am hopeful for you. Keep us updated!
catra121 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
BioBased (07-17-2016), ger715 (07-22-2016), PurpleFoot721 (07-16-2016), RSD ME (07-26-2016), St George 2013 (07-21-2016), zinnia (07-17-2016)
Old 07-17-2016, 06:28 PM #8
zinnia zinnia is offline
Member
 
Join Date: Nov 2015
Posts: 126
8 yr Member
zinnia zinnia is offline
Member
 
Join Date: Nov 2015
Posts: 126
8 yr Member
Default

Hope you are feeling better soon Alaina. Glad to hear you can touch your foot. Thanks for the update. Wishing you the best.
peace
zinnia
zinnia is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
CRPSbe (07-18-2016), ger715 (07-22-2016), PurpleFoot721 (07-17-2016), RSD ME (07-26-2016), St George 2013 (07-21-2016)
Reply

Tags
scs, time, tomorrow, treatment, trial


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
Tomorrow is the big day Spiney95 SCS & Pain Pumps 8 08-08-2012 06:43 PM
ENT tomorrow Annie59 Myasthenia Gravis 11 01-05-2011 07:11 PM
tomorrow is the big day lostmary Reflex Sympathetic Dystrophy (RSD and CRPS) 9 01-18-2010 06:24 PM
Tomorrow's the day! msarkie The Stumble Inn 6 11-23-2009 04:32 PM


All times are GMT -5. The time now is 02:21 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.