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 01-23-2016, 12:52 PM #11
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
Default

Well poop. Third try was supposed to be the charm!

I'm sure you are frustrated the appointment didn't even focus on ketamine. I concur with your instincts, wait and see the 4th doctor.

This guy may have something about the SCS addressing blood flow. I only say this because I asked my PM this week about the circulation issues and he said SCS or blocks were the only things that would change that. Which he followed by noting he didn't think I was interested in either of those. He also still calls it RSD, hard to make the name change I guess.

If I thought blocks would fix blood flow without any risk I'd probably be all over that myself, seeing as ketamine doesn't get rid of that problem.

I don't remember - did you ever have any blocks done? Just curious. I'd try that over an SCS for sure.

So sorry you didn't get what you needed.
I am sending extra hugs for the day.
__________________
Littlepaw

Shine Your Bright Light
Littlepaw is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
mama mac (01-23-2016), PurpleFoot721 (01-23-2016)

advertisement
Old 01-23-2016, 01:55 PM #12
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

The whole idea of SCS addressing blood flow issues made sense to me. I can say that it did not seem that he was trying to sell SCS to me, he just thought that it might be a better option. He even recommended that I go to another doctor to have it done, so I know he wasn't just pushing it to make easy money.

This is the first that I have heard that blocks might help with blood flow. I have not yet had any blocks done, but it is worth looking into as an option again. Thank you for that Littlepaw
__________________

.

Alaina
PurpleFoot721 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Littlepaw (01-23-2016), mama mac (01-23-2016)
Old 01-23-2016, 02:06 PM #13
-Spike-'s Avatar
-Spike- -Spike- is offline
Member
 
Join Date: Sep 2015
Posts: 277
8 yr Member
-Spike- -Spike- is offline
Member
-Spike-'s Avatar
 
Join Date: Sep 2015
Posts: 277
8 yr Member
Default

Quote:
Originally Posted by PurpleFoot721 View Post
Well, I am back from my consultation. I still don't quite know what to think about the appointment. First, he was more of a salesman than a doctor, in my opinion. Very smooth fast talker that was just trying to make a sale. It wasn't ketamine that he was trying to sell though. He feels that I would benefit more from a SCS over ketamine infusions for two reasons; insurance will cover SCS, and he believes that SCS will also help with my blood flow problems. He didn't talk too much about ketamine, and what he did say, my eyes were kind of glazing over wondering what he just said. I am not even sure how much he even knows about CRPS, especially since when I said CRPS, I got a strange look with a response of "oh, you mean RSD". That doesn't bother me too much, since a lot of doctors are still calling it RSD, but I still get this feeling to keep on looking.

I don't think the appointment was a complete waste of time. It gave me a chance to meet up with another PM doctor and hear what he has to say and learn a little about ketamine, although not much was said about it. What I don't understand is - why do so many doctors want to push the SCS? The doctor I saw today said I would benefit more from SCS than ketamine, but he does not do SCS.

Thank you everybody for your questions and concerns, but since we didn't spend much time talking about infusions, not too many of the questions actually came up.

I really just don't know what to think about today's appointment. I will see what happens with PM #4 on February 9.
I know why they push SCS. First, My doctor told me that the surgery is said to bring relief to about 85% of the patients that try it.

And the second reason some Doctors push for SCS implants is, it is about a $32,000 surgery to do and really brings in great profit to everyone involved in the surgical implantation (The Surgeon, the salesman of the device used, and the company that produces the device). I came across a very aggressive salesman, when they did my SCS trial. It left a bad taste in my mouth. At least in your case, this particular Doctor is not the one that would do the surgery, so that is a good sign about who this person is.

I'm glad that your appointment went well, even if it didn't go quite the way that you had anticipated.
__________________
~ No Pain is Gain ~
-Spike-
-Spike- is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
mama mac (01-23-2016), PurpleFoot721 (01-23-2016)
Old 01-23-2016, 02:16 PM #14
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
Default

Quote:
Originally Posted by PurpleFoot721 View Post
This is the first that I have heard that blocks might help with blood flow. I have not yet had any blocks done, but it is worth looking into as an option again. Thank you for that Littlepaw

Just FYI - sympathetic blocks increase blood flow and temperature in anyone, not just CRPS patients. If you get pain relief with them then the pain is sympathetically mediated from what I have read. They have short term effects so are sometimes done serially. Though with you, as much discoloration as you have, it would be interesting to know if blocks normalized that even short-term.

BTW _ I am not advocating you get these. Just thinking out loud and passing along information. I think the hardest thing with you is that you aren't healed yet but they need to do something to bring you relief. I support you no matter what you decide you need to do.

__________________
Littlepaw

Shine Your Bright Light
Littlepaw is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
PurpleFoot721 (01-23-2016)
Old 01-23-2016, 09:11 PM #15
mama mac mama mac is offline
Member
 
Join Date: Aug 2015
Location: Small Town East Texas
Posts: 159
8 yr Member
mama mac mama mac is offline
Member
 
Join Date: Aug 2015
Location: Small Town East Texas
Posts: 159
8 yr Member
Default

The PM docs that I have seen that really pushed the SCS did not do the surgery either, but they do the trial for it. They also sell specific models of SCS's. I'm not sure that they do not benefit in some way from selling a model. Maybe stock in the company. I don't know. As Spike said, they are effective in about 85% of people but it is time limited. I can certainly understand why people that are bed bound or have a consisent very high pain level would try them. They usually work about three years and for some the risk of complications are worth the increase in quality of life. It's such a personal decision. I also paid less for the ketamine than I would for the SCS w/ deductibles and out of pocket costs. There is also a considerable cost per year for maintenance for the SCS even without complications.
Just had to check in and see how your appointment went. Third time was not a charm for me either. You sound like you are keeping things in perspective and have a Plan B or is C or D...... mac
mama mac is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
PurpleFoot721 (01-23-2016)
Old 01-23-2016, 09:16 PM #16
-Spike-'s Avatar
-Spike- -Spike- is offline
Member
 
Join Date: Sep 2015
Posts: 277
8 yr Member
-Spike- -Spike- is offline
Member
-Spike-'s Avatar
 
Join Date: Sep 2015
Posts: 277
8 yr Member
Default

Quote:
Originally Posted by mama mac View Post
The PM docs that I have seen that really pushed the SCS did not do the surgery either, but they do the trial for it. They also sell specific models of SCS's. I'm not sure that they do not benefit in some way from selling a model. Maybe stock in the company. I don't know. As Spike said, they are effective in about 85% of people but it is time limited. I can certainly understand why people that are bed bound or have a consisent very high pain level would try them. They usually work about three years and for some the risk of complications are worth the increase in quality of life. It's such a personal decision. I also paid less for the ketamine than I would for the SCS w/ deductibles and out of pocket costs. There is also a considerable cost per year for maintenance for the SCS even without complications.
Just had to check in and see how your appointment went. Third time was not a charm for me either. You sound like you are keeping things in perspective and have a Plan B or is C or D...... mac

The benefit the Surgeon gets is from the $$$ Cost of the surgery, from which they receive payment.
__________________
~ No Pain is Gain ~
-Spike-
-Spike- is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
PurpleFoot721 (01-23-2016)
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
Consultation with surgeon kimmyF Myasthenia Gravis 2 03-15-2012 07:54 PM
Need a MrsD Consultation, please... Yorkiemom Peripheral Neuropathy 8 09-08-2007 09:48 PM


All times are GMT -5. The time now is 07:46 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.