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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)

RSD/CRPS Treatment Center

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Unread 06-10-2009, 06:32 PM   #1
Jimking
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Default RSD/CRPS Treatment Center

Has anyone visited the RSD/CRPS Treatment Center and Research Institute in Tampa Fla? I've talked to them a year or so ago about their ketamine treatments but was told they do not except insurance. However, the Canada government does pay for its citizens access to this facility. At around the same time George Washington Hospital in DC excepted my wife and insurance for a 4 day outpatient ketamine infusion and didn't follow up on the Center in Tampa. The ketamine didn't work for my wife and was wondering if the Research Institute offer other treatments or recommendations?
http://www.rsdhealthcare.org/index.html
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Unread 06-11-2009, 04:34 PM   #2
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Hi. I checked into this center to. I was interested in the ketamine but they also do nerve blocks and when I asked and this is just from being told he also deals with meds. There is a couple reviews about the treatment on facebook. The staff was willing to squeeze me in pretty quick. The only thing I did not like is how they have the website with all the billing and how much you have to put down and with no insurance issues though I think you can bill but you must pay upfront. I am blessed to be able to do this if decide but many are not and I am not sure why doctors are not doing the insurance and also the pricing seems high but I don't know.
You said your wife did not respond to the ketamine but what else has she tried and what type of doctor is following her now? I am not familiar without of US but do you have a place near you that they deal with rsd or a big hospital like we in the US have University or teaching hospitals. I have went out of state for care to Cleveland Clinic where they deal a lot with rsd though I have mixed feelings,local places,and UCLA and a specialist I saw on the mystery dx in Ca. There is a specialist in Philli who has worked with Dr K but his wait list is long. I think a lot is going to depend on what your wife has tried and what approach she wants to take as well
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Unread 06-15-2009, 09:35 AM   #3
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Thanks for the response daniella. My wife, several years ago came to the conclusion not to allow any invasive procedures be performed on her to treat her RSD. Even blocks are temporary and may make things worse or may not but not willing to risk it. She looked into pumps and spinal stimulators and stated that she'd only consider it if things became very bad in the future. She did allow for ketamine and lidocaine infusions with weekly ketamine booster shots but did nothing for her and in fact her right leg and ankles have swollen since then. This was a 4 day out patient treatment. A 10 day treatment may work but GW hospital does not provide that. Earlier in her disease we went to Johns Hopkins which turned out to be a bad experience. She does have a pain specialist that does a very good job in controlling her pain. My wife is very vocal with doctors in what they may demand of her and will tell them she does not agree with invasive procedures and meds that make her sick, gain large amounts of weight and those that make her head fuzzy such as anti-seizure drugs. She takes pain meds, muscle and bone meds, anti-inflammatories. She diets, eating plenty of fruits and veggies and exercises.
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Unread 06-15-2009, 04:46 PM   #4
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Hi. I am sorry about your wife. I can relate as the blocks made me worse and the lidocaine infusion did as well. I am back on meds ones like neurontin and anti inflammatory and am trying to do other things like diet/supplement and possible hbot. Have you thought about possible hbot? I know most insurance does not cover for rsd so don't know if it would be an option. I know for me this could not be but have heard some here say it helps as the tens unit?Is there any of the meds like neurontin she has not tried that maybe she could try?I know when I called the treatment center the lady was nice and answered my ?'s but I did feel that it was the ketamine as there major focus and possibly the blocks and I am not sure though they said yes but I got a weird feeling about meds. I am sorry as I wish I had more answers or thoughts for you and your wife. I am here if you want to PM me anytime or your wife.
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Unread 06-16-2009, 12:47 PM   #5
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Jimking,

I have just come off a major pain flare or I would have posted here before now. I am sorry that your wife is having a difficult time. I understand her refusal for invasive medical remedies. There are no miracle cures for RSD/CRPS.. we KNOW this to be a fact. It would be so wonderful if the treatment for this disease would not make the RSD patient feel even worse because of the by-products of the pain management.

What can one do,though? I know that Neurontin has put about 70 lbs on me in a 2 yr. period; however, I know it also quiets the horrible burning pain inside my body. Further, the other meds I have to take have their own side effects.

I am here for you and your wife. Please keep me informed of her condition. Also, as a caretaker, take time for you,too. Yes, you are important,too.
All for One and One for ALL!

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A Positive Attitude Will Assist Me Toward An Active Life, Once Again
WC Injury 03/24/07;Two Right Knee Surgeries on 5/22/07 and 01/16/08. Surgeons and Physical Therapists ignored my concerns of burning pain, swelling, and no improvement and getting worse. Diagnosed RSD/CRPS I/Sympathetically Mediated Pain Syndrome/Chronic Pain on 06/2008 by family doc;on 08/2008 and 12/2008 diagnosis confirmed by two WC PM Doctors: Both legs;hips; hands; and spine effected by this culprit. SSDI granted 01/2009.
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Unread 06-19-2009, 09:15 AM   #6
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daniella, we have looked into the hbot and are keeping that window opened. Our insurance will not pay for it and their are none in our area which makes it difficult because apparently this treatment calls for many sessions. As far as she taking neurontin or something similar I'm not sure but she does take several different meds, so I'll ask her. Thanks again!


Good morning Dew, I'm glad your spell is over and I'm sure you are too!!
Suzy finally received her Opana and didn't like it. She seemed to be ok with it but she said she felt like she had a hangover from it so she switched back to her old med oxycoton with increased mg.
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Unread 06-20-2009, 12:24 PM   #7
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Jim yes I know even here insurance except for a select few I have heard covers HBOT. You can't have it done in a major hospital for nerve conditions and so you have to find a place that does hbot in a private clinic. If I do it which I may I will for sure keep everyone updated. Do you think maybe your wife would like to post here to? I think it is awesome you do and I hope you continue but I know for me the support of others helps so why I suggested for your wife.
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Unread 06-22-2009, 01:48 PM   #8
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Quote:
Originally Posted by daniella View Post
Jim yes I know even here insurance except for a select few I have heard covers HBOT. You can't have it done in a major hospital for nerve conditions and so you have to find a place that does hbot in a private clinic. If I do it which I may I will for sure keep everyone updated. Do you think maybe your wife would like to post here to? I think it is awesome you do and I hope you continue but I know for me the support of others helps so why I suggested for your wife.
I know it sounds strange but she very shy and very private when it pertains to her RSD. She only discusses her RSD with me and the doctor and no one else. When she was a child she was very shy of doctors and had a fit when her mother would take her. The other issue is her right arm is crippled from the disease and is in a brace. Before Suzy hurt herself and came down with RSD, I've only known her to go to the doctor twice in 20 years. She knows I post here and she reads this site daily.
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Unread 06-22-2009, 05:31 PM   #9
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Hi. I know everyone deals with health and life in general in a different way. If your wife wants an email buddy you can have her private message me or you can to. That may seem less overwhelming. Just a thought and she does not have to nor do you but I am here anytime. You are a very kind husband to help in the way you are. Hang in there to both of you
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Unread 06-23-2009, 02:31 PM   #10
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Quote:
Originally Posted by daniella View Post
Hi. I know everyone deals with health and life in general in a different way. If your wife wants an email buddy you can have her private message me or you can to. That may seem less overwhelming. Just a thought and she does not have to nor do you but I am here anytime. You are a very kind husband to help in the way you are. Hang in there to both of you
Thanks daniella! One other reason I post here other than learn from everyone is hopefully Suzy will start chatting to those who are going thru the same thing. She does open up sometimes.
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