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)


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Old 08-08-2011, 08:56 AM #1
CZZ74 CZZ74 is offline
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Default Dr. Schwartzmans opinion of the intracathal pain pump

Hi,
I was hoping someone knew dr. Schwartzmans opinion on the medtronic( or any Manu) pain pump for drug delivery. I have searched for articles but have been unable to locate one .
I am desperately seeking surgery for the pump- my pain management gave me the trial which was very successful - so exciting - since then he has led me on for almost 3 months with delays - turns out I would be his first implant this is a risk I can not take- he has done numerous scs. I need an expert with RSD surgeries not just the pump as I'm sure everyone can relate.
So I wanted to ask dr S. But hoped to know his feelings first . The other doctor here who does them and does them well will not work with anyone who has RSD- can u believe it.
You might remember I had the coma treatment with dr. s.
Thank you CZ

Thank you
CZ

Last edited by CZZ74; 08-08-2011 at 09:11 AM. Reason: Additional info
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Old 08-08-2011, 01:24 PM #2
kathy d kathy d is offline
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kathy d kathy d is offline
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Hi CZ,
I am happy to hear the pain pump is working for you. I don't believe Dr. S does any type of surgeries. I have known him for several years and I think he sends people to other doctors for that type of treatment. Maybe I am wrong??? You could always call his office and ask one of the nurses there for guidance.

I understand completely your not wanting to be the first one in line for a new surgery with that doctor. Unbelievable a doctor will not perform surgery on you because you have rsd??? Isn't that discrimination??? Sounds like it to me. Either you do surgery or you don't. Hopefully one of his family members or close friends will never be in the predicament you are in.

You say you had a "coma" treatment with Dr. S?? He does not do the coma treatment as it is illegal in the U.S. Do you mean the ketamine in-patient or out-patient treatment? Probably so. I just don't want anyone else trying to find their way in their journey to think he does something only to find out he does not. We all know to well how discouraging things can be for us. I hope you will find a doctor to help you. I can't believe that other doc does surgeries successfully but won't touch an rsd patient. Little does he realize that there are soooo many people out there that have it and are not diagnosed correctly or undiagnosed. It seems to me (call me crazy) that as a medical professional you would want to help people get out of pain and help them instead of ignoring them and giving them no hope at all. Just my two cents. I hope you are having a good day.
Take care,
kathy d
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Old 08-08-2011, 05:27 PM #3
keep smilin keep smilin is offline
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Quote:
Originally Posted by kathy d View Post
Hi CZ,
I am happy to hear the pain pump is working for you. I don't believe Dr. S does any type of surgeries. I have known him for several years and I think he sends people to other doctors for that type of treatment. Maybe I am wrong??? You could always call his office and ask one of the nurses there for guidance.

I understand completely your not wanting to be the first one in line for a new surgery with that doctor. Unbelievable a doctor will not perform surgery on you because you have rsd??? Isn't that discrimination??? Sounds like it to me. Either you do surgery or you don't. Hopefully one of his family members or close friends will never be in the predicament you are in.

You say you had a "coma" treatment with Dr. S?? He does not do the coma treatment as it is illegal in the U.S. Do you mean the ketamine in-patient or
out-patient treatment? Probably so. I just don't want anyone else trying to find their way in their journey to think he does something only to find out he does
not. We all know to well how discouraging things can be for us. I hope you will
find a doctor to help you. I can't believe that other doc does surgeries successfully but won't touch an rsd patient. Little does he realize that there ar
e soooo many people out there that have it and are not diagnosed correctly or
undiagnosed. It seems to me (call me crazy) that as a medical professional
you would want to help people get out of pain and help them instead of
ignoring them and giving them no hope at all. Just my two cents. I hope you
are having a good day.


Take care,
kathy d

Hello Czz and Kathy,

If I understand your question correctly, but I believe Dr.S is not a fan of the pain pump....So sorry....

Hugz, Kathy
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Old 08-09-2011, 09:01 PM #4
CZZ74 CZZ74 is offline
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Default Coma treatment in Germany

Hi Kathy,
thanks so much for responding.Yes it should be illegal for the pain mangament doctor to deny anyonwe with rsd. Its not just surgery, he will not even treat them for initial epidural, pain blocks etc.
Just too big a hassle and no money whetn it ends up being script pick up each month.
The worst part is he is a very good docotr.

"
Quote:
You say you had a "coma" treatment with Dr. S?? He does not do the coma treatment as it is illegal in the U.S. Do you mean the ketamine in-patient or out-patient treatment? Probably so. I just don't want anyone else trying to find their way in their journey to think he does something only to find out he does not."


Thanks for asking for the correction, I am and was a patient of Dr. S since 2005. Correctly as well,I have had all the inpatient ICU 5 day lidocaine and ketamine, and many many out patient ketamine infusion- 3 day -10 day..They helped a great deal however the relief was short term.
Dr. S decided I needed the coma treatment.. My RSD had gone full body and truly was simply unbearable.
In Gerrmany under Dr. Rohr I had the coma treatment- that was in 2007;
and then returned to Dr. S for follow up infusion.
Im not sure where patients are referred to now. Id be interested to know if patients are still going to "Germany.

Dr. Kirkpatrick, Tampa, sends his patients to Mexico for coma treatment.I am not sure what the protocal is for Dr. S.
I am very committed to receiving thepump. As i said the trial was amazing.l I was virtually pain free. After being housebund for 8 years. the thought of driving is well im sure you iknow.
thanks again kathy/ cz

Quote:
Originally Posted by kathy d View Post
Hi CZ,
I am happy to hear the pain pump is working for you. I don't believe Dr. S does any type of surgeries. I have known him for several years and I think he sends people to other doctors for that type of treatment. Maybe I am wrong??? You could always call his office and ask one of the nurses there for guidance.

I understand completely your not wanting to be the first one in line for a new surgery with that doctor. Unbelievable a doctor will not perform surgery on you because you have rsd??? Isn't that discrimination??? Sounds like it to me. Either you do surgery or you don't. Hopefully one of his family members or close friends will never be in the predicament you are in.

We all know to well how discouraging things can be for us. I hope you will find a doctor to help you. I can't believe that other doc does surgeries successfully but won't touch an rsd patient. Little does he realize that there are soooo many people out there that have it and are not diagnosed correctly or undiagnosed. It seems to me (call me crazy) that as a medical professional you would want to help people get out of pain and help them instead of ignoring them and giving them no hope at all. Just my two cents. I hope you are having a good day.
Take care,
kathy d
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Old 08-09-2011, 09:05 PM #5
CZZ74 CZZ74 is offline
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Default thanks so much Kathy

Thanks Kathy, thats what I was afraid of, I knew that he removes most SCS but i wasnt sure how he felt about the pain pump ( intracathal). Well looks like im on my way to Duke. there program is suppose to be pretty amazing.
Thank you again take care cz






Quote:
Originally Posted by keep smilin View Post
Hello Czz and Kathy,

If I understand your question correctly, but I believe Dr.S is not a fan of the pain pump....So sorry....

Hugz, Kathy
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Old 08-10-2011, 01:46 AM #6
daniella daniella is offline
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CZ I am not for sure if for RSD but I recall when I was at the day pain program them speaking about the pump. I know it is one of the last things they said they like to do. Which for you sounds like you have tried everything else. Just a thought for another option.
May I ask you stated you had the infusions of ketamine and coma but then also was housebound. Did the infusions help at all or the coma? Did you have any negatives with it? Sorry to ask a ? on your post.
I hope you find what works for you. Sending better thoughts
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Old 08-19-2011, 10:45 PM #7
debbiehub debbiehub is offline
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Default Hi

CZ, did you get my PM?

Debbie
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