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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)

Those who have had ketamine?

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Unread 05-16-2011, 07:21 PM   #11
SandyRI
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Daniella, If you can go anywhere, the first place you may want to check out is the Hospital for Special Surgery in NYC. Dr. Richman. I have heard wonderful things about him from more than one RSDer.

Betsykk has also highly recommended Dr. Chin (?) at George Washington in DC.

Good luck.
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Unread 05-17-2011, 04:38 AM   #12
gabbycakes
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Quote:
Originally Posted by daniella View Post
I know there are so many posts about ketamine infusions so sorry to make another. I was wondering if people who have had this treatment could answer some of these questions.

1 Who did you have ketamine with and was it outpatient or inpatient? Were you happy with your doctors care?
2 Did anyone's pain get worse?
3 What percentage of pain relief do you feel you have? Are you doing boosters?
4 Any lasting side effects?
5 Any spread of RSD or new conditions that have happened?
6 Anything else you wish you would of asked or done?
Thank you for any feedback
Hi Daniella,

I had 3 5 day-inpatient ketamine treatments from 2005-2008. I had it done at the Hospital for Special Surgery and my doctor was Daniel Richman, MD at the time he was my Pain Managment doctor also. The care was excellant and he is a very smart caring doctor and a nice person. Great office staff. All the doctors in the pain department do ketamine. They do many other procedures ketamine is properly last on the list.

My pain did not get worse.

My RSD came with other things like migranes, not sleeping, fatique, and ofcourse the pain. Percentage I would say my pain decreased 70%. But I rarely get headaches,I actually sleep 7-8 hours at one time and the fatique is all but gone. I did my booster in PA with Dr. Scwartzman following the normal protocol. I also have seen Dr. Hertz out of St. Lukes in NYC for boosters. I have not had a booster in 2 1/2 years.. It's a real love hate relationship I have with ketamine, let's just say where not best friends.

I don't feel I had any long lasting side effects. I just didn't like the way it made my stomach feel while I was doing the infusion that was the hardest for me. I really never had halluncinations I would call it heavy dreaming but it was always positive.

No new conditions or spread. But I do have other conditions in the effected area so ofcourse the ketamine only worked for the RSD.

I was pretty well prepared. There is quite a list of pre-admission testing they require before they give the o.k. for anyone to have the procedure.

Hope I answered all your questions.

Good Luck.
Gabbycakes

Last edited by gabbycakes; 05-17-2011 at 04:43 AM. Reason: spelling
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Unread 05-17-2011, 04:52 AM   #13
daniella
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Thank you again for all your feedback. I am loosing my mind again from pain,then lack of sleep,then anxiety and the cycle goes round and round.
Sandy if I find something for the hearing I will for sure let you know and please if you find something let me. Yesterday my ears were so sensitive I had my hand over my ears while I was laying. I can't wear ear plugs anymore because of my ear pain plus I was getting infections.I have also heard good things about Dr Richman. I live in South FL and my mom suggested I see Dr K in Tampa since it is a few hours away but for some reason I am not sure about him. I feel similar though with Dr S in Philli. So maybe I just am worring.
Dee I am sorry you have to fight the insurance. I am not sure what is wrong with these companies. I think they hope the patient will give up because it is such a battle. I would think if more insurance companies covered more regular hospitals would do this procedure.
Betsy and Ginny thank you again
Gabby I heard from others they had stomach issues as well. What type of pre testing? At least you have some benefits. The sleep sounds so amazing plus of course less pain.
Thanks again all. I think I need to at least go for a consult and hear the feedback from the doctor etc. So draining to start again with a new pain doctor. I have seen a few. Hoping everyone has a good day
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Unread 05-17-2011, 08:05 AM   #14
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Hello, you are practically my neighbor. I am on Anna Maria. I also have a fantastic pain specialist down in bradenton, Dr. Ramos. Just so you know there is another in your area. Ginnie
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Unread 05-17-2011, 08:39 AM   #15
SandyRI
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Patients love Kirkpatrick also. I forgot about him. Especially if money is not an issue for you, since he requires that you pay for your infusions up front. He works closely with Dr. S. and is very highly qualified. The $$ thing is definitely a turn-off, but the whole industry seems to be like that, it's hard to get away from it...it is what it is. sigh... I don't think there is even much of a wait to get in. SandyS LOVED him when she took her daughter there.

Good luck, I got hurt in Nov 2006, so I've been sick now for 4 and a half years. Ketamine makes life a bit more bearable. xoxo Sandy


Quote:
Originally Posted by daniella View Post
Thank you again for all your feedback. I am loosing my mind again from pain,then lack of sleep,then anxiety and the cycle goes round and round.
Sandy if I find something for the hearing I will for sure let you know and please if you find something let me. Yesterday my ears were so sensitive I had my hand over my ears while I was laying. I can't wear ear plugs anymore because of my ear pain plus I was getting infections.I have also heard good things about Dr Richman. I live in South FL and my mom suggested I see Dr K in Tampa since it is a few hours away but for some reason I am not sure about him. I feel similar though with Dr S in Philli. So maybe I just am worring.
Dee I am sorry you have to fight the insurance. I am not sure what is wrong with these companies. I think they hope the patient will give up because it is such a battle. I would think if more insurance companies covered more regular hospitals would do this procedure.
Betsy and Ginny thank you again
Gabby I heard from others they had stomach issues as well. What type of pre testing? At least you have some benefits. The sleep sounds so amazing plus of course less pain.
Thanks again all. I think I need to at least go for a consult and hear the feedback from the doctor etc. So draining to start again with a new pain doctor. I have seen a few. Hoping everyone has a good day
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Unread 05-17-2011, 10:09 AM   #16
daniella
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Ginnie is that in the Tampa area where your doctor is? Does that doctor deal with meds or what type of doctor is that?
Sandy I do feel it is a turn off when doctor's make it seem like it is about the money but if I get any benefit I will put that issue aside. On his site he has the price list for the treatments. Ugh but I did email Sandy awhile back and she had really good things to say about him.
Though he works with Dr S it seems the actual treatment differs in terms of dose and being op vs ip.
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Unread 05-17-2011, 06:34 PM   #17
gabbycakes
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Quote:
Originally Posted by daniella View Post
Thank you again for all your feedback. I am loosing my mind again from pain,then lack of sleep,then anxiety and the cycle goes round and round.
Sandy if I find something for the hearing I will for sure let you know and please if you find something let me. Yesterday my ears were so sensitive I had my hand over my ears while I was laying. I can't wear ear plugs anymore because of my ear pain plus I was getting infections.I have also heard good things about Dr Richman. I live in South FL and my mom suggested I see Dr K in Tampa since it is a few hours away but for some reason I am not sure about him. I feel similar though with Dr S in Philli. So maybe I just am worring.
Dee I am sorry you have to fight the insurance. I am not sure what is wrong with these companies. I think they hope the patient will give up because it is such a battle. I would think if more insurance companies covered more regular hospitals would do this procedure.
Betsy and Ginny thank you again
Gabby I heard from others they had stomach issues as well. What type of pre testing? At least you have some benefits. The sleep sounds so amazing plus of course less pain.
Thanks again all. I think I need to at least go for a consult and hear the feedback from the doctor etc. So draining to start again with a new pain doctor. I have seen a few. Hoping everyone has a good day
Hi Daniella,

The pre-testing consisted of EKG, actually I had to see a cardiologist and they did more than just an EKG but don't remember to be honest, Blood Work, Physc. evaluation and a complete exam by one of there PCP. Just as if you went in for surgery.

Gabbycakes
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Unread 06-02-2011, 04:33 PM   #18
msdrea83
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1 Who did you have ketamine with and was it outpatient or inpatient? Were you happy with your doctors care?
~Dr. Thomas Leverone,outpatient,very happy

2 Did anyone's pain get worse?
~Mine has not

3 What percentage of pain relief do you feel you have? Are you doing boosters?
~I get 100% relief for about 6 months. I take ketamine pills twice a day for 2 weeks after the infusion

4 Any lasting side effects?
~nope!

5 Any spread of RSD or new conditions that have happened?
~negative

6 Anything else you wish you would of asked or done?
~wish we'd found him sooner!
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~*Andrea*~
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Unread 06-02-2011, 05:41 PM   #19
kathy d
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Hi All, I had to laugh when SandyRI said "Hahnemann, on the other hand, does NOT have such a great rep, despite having Dr. S. on board. Its nursing staff just doesn't care that much. The outpatient is OK, but inpatient care can be shaky..." Shaky would be a total understatement! I would never want to do inpatient there again. The nursing staff ruined my treatment and eight months later I have so many problems as a result of their stupidity...all it takes is one person who doesn't care and it can ruin your life. Amazing. They just do not care. Their idea of ICU is not the norm. If anyone has to go there make sure they have someone as an advocate to watch everything they do all the time. I guess I am the exception to the rule for ketamine treatment. It did help me but it was a rough time in there. A fall in the ICU (their fault) caused me severe pain and now still several months later I am left worse now than I ever was. Just be careful out there. If I ever met the nurse that did this to me I would have a few choice words for her!!!
kathy d
P.S. All I can think of is what comes around goes around and she will be very sorry. I pray what happened to me never happens to them or their loved ones.
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