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 09-07-2010, 01:18 PM #1
rtmcmahon631 rtmcmahon631 is offline
Junior Member
 
Join Date: Apr 2009
Posts: 29
15 yr Member
rtmcmahon631 rtmcmahon631 is offline
Junior Member
 
Join Date: Apr 2009
Posts: 29
15 yr Member
Question dont know what to do

hi my name is bob and i haven`t posted any thing in a long time.I was injured in 12/18/2007 by a fall at work on ice. I went to the docs and was told i have tennis elbow torn ligament in my arm opt to a cortizone shot than a operation just to finnish out my work season.By this time because its workmens comp it was april.after receiving the shot it worked great until sept. I then received another shot and my world went upside down it was the most painful thing I almost past out. the next few days it became very swollen and it turned red i then called my docter and he said it looked like i had rsd.I then went to a pain doc which put me on all sorts of medsFor thenext few months he decided to try i block in my neck which sent my rsd even more out of control. Then he said that a spinal stimulator was the next step.Not liking this i went for a second opion which was with another pain doc in a large clinic.He then put me on differnt meds which has helped my pain isn`t as bad but still there i now have color changes but not as often and my pain comes and goes which is alot better.they tried beir blocks i think it was 5 of them It was great for about 2 weeks then back to where it was before.Now it was suggested that I have a spine stimulater again.I said i would try it the comp isurence approved it then denyed it and sent me to a surgen a M.E. he said that i should take the risk of the rsd and get the arm fixed which is scaring the heck out of me. the first pain doc said that i should never let anyone to operate on it.Dont know what to do.Dont know if anyone went through this
rtmcmahon631 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
loretta (09-19-2010)

advertisement
Old 09-07-2010, 02:50 PM #2
keep smilin keep smilin is offline
Member
 
Join Date: Aug 2009
Posts: 851
10 yr Member
keep smilin keep smilin is offline
Member
 
Join Date: Aug 2009
Posts: 851
10 yr Member
Help Hope I can help..

Quote:
Originally Posted by rtmcmahon631 View Post
hi my name is bob and i haven`t posted any thing in a long time.I was injured in 12/18/2007 by a fall at work on ice. I went to the docs and was told i have tennis elbow torn ligament in my arm opt to a cortizone shot than a operation just to finnish out my work season.By this time because its workmens comp it was april.after receiving the shot it worked great until sept. I then received another shot and my world went upside down it was the most painful thing I almost past out. the next few days it became very swollen and it turned red i then called my docter and he said it looked like i had rsd.I then went to a pain doc which put me on all sorts of medsFor thenext few months he decided to try i block in my neck which sent my rsd even more out of control. Then he said that a spinal stimulator was the next step.Not liking this i went for a second opion which was with another pain doc in a large clinic.He then put me on differnt meds which has helped my pain isn`t as bad but still there i now have color changes but not as often and my pain comes and goes which is alot better.they tried beir blocks i think it was 5 of them It was great for about 2 weeks then back to where it was before.Now it was suggested that I have a spine stimulater again.I said i would try it the comp isurence approved it then denyed it and sent me to a surgen a M.E. he said that i should take the risk of the rsd and get the arm fixed which is scaring the heck out of me. the first pain doc said that i should never let anyone to operate on it.Dont know what to do.Dont know if anyone went through this

Hello Bob....

I am sorry for your situation with your RSD.. This is a terrible condition, very confusing and finding proper, timely health care is a must...

I understand your Dr. trying the pain meds and blocks as RSD can be caused by the smallest of injuries and treatment is a must, quickly if remission is even possible... But I question the spinal cord stimulator as a quick resolution and even question more about doing surgery..We are considered a "no touch" patient and intervention like that can cause spread of our RSD... I believe the idea of surgery would not be the best option..rather a third Dr. to give you a bit more insight on your case..possibly an anesteslogist, neurologists or another pain management Dr... our options are so limited at best but at the same time we need to explore everyone of them to maximize our care..and WC does not make things any easier..My suggestion is to get more medical knowledge, input into your care then make your selection on how to proceed...

Let us know if we can help you in anyway... I am sorry you too have to live in such pain as we all do here with our nasty friend, RSD!

Best wishes, Kathy
keep smilin is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
loretta (09-19-2010), rtmcmahon631 (09-07-2010)
Old 09-07-2010, 04:02 PM #3
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

Dear Bob,

I almost certainly had RSD after my injury in 11/2006 (torn rotator cuff, ice and real agressive PT), and then again after my first rotator cuff repair in 5/2007. I was never diagnosed with RSD, but just couldn't recover from the surgery and had a lot of the symptoms. But things didn't get out of hand until I had the SECOND surgery in 4/2008. Then that summer a PM doc started trigger point injections in my shoulder, back, neck and head and it spread. By the time I was finally diagnosed I was a real mess - I've had RSD in my cervical spine and the back of my head ever since and its the pits.

The best treatment I've received to date have been ketamine infusions and lidocaine infusions. Ketamine is far more powerful than lidocaine. But the lidocaine did work to calm down some of the terrible burn for me. I got the lidocaine at St. E's in Boston (it was readily approved by WC) from July of 2009 until March of 2010. It takes several infusions before you feel anything.

My ketamine I now get in RI with the same PM doc that I started with years ago who caused my RSD to spread in the first place. Court ordered - WC - talk about coming full circle!! But I started out in April of 2010 with Dr. Philip Getson in Marlton, NJ. He is awesome and knows his stuff - you can trust him not to screw you up!! And he passed along all my dosages, etc to the RI doc. Getson performed my first 22 infusions.

Have your attorney petition the WC court on your behalf for ketamine infusions. You will need to have your doctor recommend it first. Go for it!! In the meantime, maybe you can try the lidocaine. And I would avoid anything invasive.

The best of luck to you, XOXOX Sandy


Quote:
Originally Posted by rtmcmahon631 View Post
hi my name is bob and i haven`t posted any thing in a long time.I was injured in 12/18/2007 by a fall at work on ice. I went to the docs and was told i have tennis elbow torn ligament in my arm opt to a cortizone shot than a operation just to finnish out my work season.By this time because its workmens comp it was april.after receiving the shot it worked great until sept. I then received another shot and my world went upside down it was the most painful thing I almost past out. the next few days it became very swollen and it turned red i then called my docter and he said it looked like i had rsd.I then went to a pain doc which put me on all sorts of medsFor thenext few months he decided to try i block in my neck which sent my rsd even more out of control. Then he said that a spinal stimulator was the next step.Not liking this i went for a second opion which was with another pain doc in a large clinic.He then put me on differnt meds which has helped my pain isn`t as bad but still there i now have color changes but not as often and my pain comes and goes which is alot better.they tried beir blocks i think it was 5 of them It was great for about 2 weeks then back to where it was before.Now it was suggested that I have a spine stimulater again.I said i would try it the comp isurence approved it then denyed it and sent me to a surgen a M.E. he said that i should take the risk of the rsd and get the arm fixed which is scaring the heck out of me. the first pain doc said that i should never let anyone to operate on it.Dont know what to do.Dont know if anyone went through this
SandyRI is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
loretta (09-19-2010), rachel's daugther (09-07-2010)
Old 09-07-2010, 06:03 PM #4
rtmcmahon631 rtmcmahon631 is offline
Junior Member
 
Join Date: Apr 2009
Posts: 29
15 yr Member
rtmcmahon631 rtmcmahon631 is offline
Junior Member
 
Join Date: Apr 2009
Posts: 29
15 yr Member
Default thank you for the reply

Quote:
Originally Posted by SandyRI View Post
Dear Bob,

I almost certainly had RSD after my injury in 11/2006 (torn rotator cuff, ice and real agressive PT), and then again after my first rotator cuff repair in 5/2007. I was never diagnosed with RSD, but just couldn't recover from the surgery and had a lot of the symptoms. But things didn't get out of hand until I had the SECOND surgery in 4/2008. Then that summer a PM doc started trigger point injections in my shoulder, back, neck and head and it spread. By the time I was finally diagnosed I was a real mess - I've had RSD in my cervical spine and the back of my head ever since and its the pits.

The best treatment I've received to date have been ketamine infusions and lidocaine infusions. Ketamine is far more powerful than lidocaine. But the lidocaine did work to calm down some of the terrible burn for me. I got the lidocaine at St. E's in Boston (it was readily approved by WC) from July of 2009 until March of 2010. It takes several infusions before you feel anything.

My ketamine I now get in RI with the same PM doc that I started with years ago who caused my RSD to spread in the first place. Court ordered - WC - talk about coming full circle!! But I started out in April of 2010 with Dr. Philip Getson in Marlton, NJ. He is awesome and knows his stuff - you can trust him not to screw you up!! And he passed along all my dosages, etc to the RI doc. Getson performed my first 22 infusions.

Have your attorney petition the WC court on your behalf for ketamine infusions. You will need to have your doctor recommend it first. Go for it!! In the meantime, maybe you can try the lidocaine. And I would avoid anything invasive.

The best of luck to you, XOXOX Sandy
thank you all for sharing i will try and get some more info dont understand why two pm docs were so quick to say there are no more options that the spine stim was the way to go
rtmcmahon631 is offline   Reply With QuoteReply With Quote
Old 09-07-2010, 07:19 PM #5
edever34 edever34 is offline
Member
 
Join Date: Mar 2009
Location: Louisville,Ky
Posts: 227
15 yr Member
edever34 edever34 is offline
Member
 
Join Date: Mar 2009
Location: Louisville,Ky
Posts: 227
15 yr Member
Default

Hi-I just wanted to refer you to the thread that talks about SCS and pain pumps at top of page. I agree to no surgery,but I have a successful SCS and a lot of stories and experiences are shared on SCS and Pain pump forum-Good Luck-Carol
edever34 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
rtmcmahon631 (09-08-2010)
Old 09-08-2010, 04:34 PM #6
hurting hurting is offline
Junior Member
 
Join Date: May 2010
Location: Midwest
Posts: 98
10 yr Member
hurting hurting is offline
Junior Member
 
Join Date: May 2010
Location: Midwest
Posts: 98
10 yr Member
Default Drs. wanting to implant a SCS so fast.

Quote:
Originally Posted by rtmcmahon631 View Post
hi my name is bob and i haven`t posted any thing in a long time.I was injured in 12/18/2007 by a fall at work on ice. I went to the docs and was told i have tennis elbow torn ligament in my arm opt to a cortizone shot than a operation just to finnish out my work season.By this time because its workmens comp it was april.after receiving the shot it worked great until sept. I then received another shot and my world went upside down it was the most painful thing I almost past out. the next few days it became very swollen and it turned red i then called my docter and he said it looked like i had rsd.I then went to a pain doc which put me on all sorts of medsFor thenext few months he decided to try i block in my neck which sent my rsd even more out of control. Then he said that a spinal stimulator was the next step.Not liking this i went for a second opion which was with another pain doc in a large clinic.He then put me on differnt meds which has helped my pain isn`t as bad but still there i now have color changes but not as often and my pain comes and goes which is alot better.they tried beir blocks i think it was 5 of them It was great for about 2 weeks then back to where it was before.Now it was suggested that I have a spine stimulater again.I said i would try it the comp isurence approved it then denyed it and sent me to a surgen a M.E. he said that i should take the risk of the rsd and get the arm fixed which is scaring the heck out of me. the first pain doc said that i should never let anyone to operate on it.Dont know what to do.Dont know if anyone went through this
Hello and sorry to that your pain in your arm is acting up.

I have nerve pain in my right hand, wrist, and entire arm now since early 2007. I had several surgery's to try to fix my nerve but so far not healing right. The pain keeps getting worst to the point that I now am lucky to get 1 hour each night of sleep. My PM Dr. from day 1 has told me that I need a SCS to make my nerve pain go away so I can get a full night of sleep and live with little to no pain.

I have been reading up on these SCS units here and on other forums. What I have found is the SCS work well for folks with back pain and hip, knee, leg pain. What I also found was many folks with hand, wrist, arm, shoulder, upper back seem to have less pain relief and for a short amount of time less then a year then they have the SCS removed.

All I can say for all that we have to go through to get one of these implanted it needs to work well by no less then 75% pain relief from the beginning and for many years there after no matter which area of the body the pain is located.

I understand that each person is different but when it comes to pain relief the out come should and needs to be the same when it comes to these SCS. Long lasting pain relief.

I see a lot of Drs. pushing and trying to hard to get their patients to get these as the cure all for everyones pain. But as I keep finding more feed back it appears this is not the case with a lot of people that have had these SCS. When I questioned my Dr. really hard about this I could see he was getting mad and at the same time not giving me any answers. So sense I could not get the answers I needed from my PM Dr. I will not get a SCS.

There are many folks here that this is working for them right now and good for them. And I hope they continue to get many years of pain relief.
hurting is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
edever34 (09-08-2010)
Old 09-14-2010, 08:21 AM #7
rtmcmahon631 rtmcmahon631 is offline
Junior Member
 
Join Date: Apr 2009
Posts: 29
15 yr Member
rtmcmahon631 rtmcmahon631 is offline
Junior Member
 
Join Date: Apr 2009
Posts: 29
15 yr Member
Default thank you for the reply

Quote:
Originally Posted by edever34 View Post
Hi-I just wanted to refer you to the thread that talks about SCS and pain pumps at top of page. I agree to no surgery,but I have a successful SCS and a lot of stories and experiences are shared on SCS and Pain pump forum-Good Luck-Carol
I hope that it is the right move I will try it I dont think it will to hurt to try it would like a full night sleep.and to cut back on meds
rtmcmahon631 is offline   Reply With QuoteReply With Quote
Old 09-15-2010, 01:57 PM #8
RNcrps2 RNcrps2 is offline
Member
 
Join Date: Nov 2009
Posts: 180
10 yr Member
RNcrps2 RNcrps2 is offline
Member
 
Join Date: Nov 2009
Posts: 180
10 yr Member
Default

Hi Bob. I know how frustrating it can be. You dont know who to trust and everyone has a different view on how to treat it. I have been told by some Drs. that you should never let anyone touch the primary area of RSD-yours being your arm. Other Drs. say if there is an injury causing the RSD that to do surgery to stop the vicious cycle. When they found your tear did they tell you it was not bad and just needed a cortizone shot and PT, or did your MRI show a bad tear that needed surgery? Dont trust w/c Dr. they will do the least possible. As you know cortizone shot is just to help with inflammation and doesnt last for long. The spinal cord stimulator surgery can also cause spreading of RSD. They will first do a trial SCS and see how much it helps you before doing a permanent implant. I had the trial and it helped but i had such fears of it spreading that i didnt do it. Some have good success-check the scs site here. momof4
RNcrps2 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
loretta (09-19-2010)
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
i dont know what to do tara General Mental Health & Emotional Support 6 12-21-2009 12:52 AM
rsd:dont know what to do rtmcmahon631 Reflex Sympathetic Dystrophy (RSD and CRPS) 14 04-20-2009 02:10 PM
rsd:dont know what to do rtmcmahon631 The Stumble Inn 2 04-16-2009 09:40 AM
I dont know Iffynah Reflex Sympathetic Dystrophy (RSD and CRPS) 11 11-03-2008 01:52 AM
new -dont know what i am doing Steff New Member Introductions 9 08-10-2007 12:54 PM


All times are GMT -5. The time now is 05:32 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.