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

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

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.

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.

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!

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.

Hello Daniella,
Earlier today I reviewed the center's website and spoke to someone at the research institute part of the center. I was horrified that the RSD/CRPS Treatment and Research Center is not what its name proclaims it to be. All of the "research" is done on the few treatments offered/sold at the center. There are many more treatments than Ketamine and nerve blocks. Maybe these work for some people, but I believe a place that claims to research and treat CRPS should research and treat all available and proven treatments. This center is essentially a Ketamine treatment facility with an arm that uses 'research' to market the Ketamine treatments offered at the facility. I'm 58 and lived for 30 years with severe CRPS, until I had Iv Ig 20 grams plus 9 grams of glutathione infused every 21 days. Research in England and France has recently discovered and documented the process of autoimmune attack upon nerves in CRPS. In addition, more and more people with CRPS and other autoimmune diseases are getting much relief and/or remission with Iv Ig. Before Iv Ig, I did not get nearly enough relief from all the pharmaceuticals I needed to manage symptoms. I use to take: Neurontin/Gabapentin 3600 per day; Klonopin 2mg at bedtime; Cymbalta 120mg per day; Methadone 5 mg twice a day; Lidocaine patches (liberal use!). I'm now off of all those meds and not in any pain. If I overdo, as I did while moving, I begin developing symptoms in my feet, which is where the CRPS process first began in my body. If I don't overdo walking and time on my feet, I am symptom free. I wish everyone with CRPS would get the opportunity to try Iv Ig in an appropriate dose at an interval of 2 to 3 weeks between infusions. The website of a non-profit called Advocacy for Patients (www.advocacyforpatients.com) has an Iv Ig support tab which provides access to letters and research papers Advocacy for Patients has used to successfully appeal denials of insurance for IvIg coverage for MS, CRPS, etc. At least Advocacy for Patients is not also selling IvIg treatments!!! People with autoimmune and other chronic illnesses can use the free services of Advocacy for Patients for help to get approval of insurance for IvIg treatment for CRPS!!!
One thing you or others may wish to ask your doctors to do is to order a blood test for you of immunoglobulins G and G subclasses plus immunoglobulin A. If, like me, you are like many others with autoimmune diseases (Yes, CRPS is now recognized as autoimmune- check out research most easily accessed at www.advocacyfor patients.org), you may have clinically low levels of immunoglobulins. In that case, then IvIg is an on-label treatment. Even so, off-label is not a valid reason for insurance companies to deny treatment. Insurance companies simply deny coverage as a matter of course at first request. Good appeals are not the ones that are simply a doctor stating that he recommends the treatment. Good appeals include a letter from a lawyer and properly conducted research, along with documented information about the efficacy of IvIg treatments. Advocacy for patients puts together good appeals for free. I am not associated with Advocacy for Patients. I found this wonderful resource in the course of my ongoing research. Since my recovery from CRPS, I want to share with all that, first of all, recovery is possible. I am living proof. I want to share with all the treatments that helped me recover and the resources available for getting insurance to cover the treatments that helped me get well. With Love! Ambika

Interesting Ambika, thanks for the post. Sounds familiar, I've ran across this info sometime ago. I think one of our members named Michael has touched on this before. Apparently this is treatment performed mainly in Europe? Anymore links you can provide about this procedure would be great, thanks.

HI! I'm new to the forum, so forgive me if some of this has been covered.
#1. I moved here from NC where I had an amazing Specialist out of Greenville SC; Dr Robert Schwartz. He is a WHOLE BODY RSD Specialist; amazing. If anyone is looking for a specialist near SC...he is your man!
#2. My husband is active duty Air Force in Central CA and I am having trouble finding an RSD MD in my health plan: TRICARE! I've been lucky and have been in remission the past 1 1/2 years; well the fun is over and the evil monster has returned; and I'm SCARED to death. I can't even begin to tell you the phone calls to offices, I've heard everything. The funniest and most absurd was a MD who refused to take me on b/c I have a Boston Scientific Stimulator. Apparently he only works with patients who have a Medtronic device!
Any ideas would be appreciated.
thanks in advance!

Hi JimKing,

I live in Tampa and my 16 year old daughter has RSD and of course it took several years for the diagnosis to come about. She has gone through two pain rehab programs for three week intervals at the Childrens hospital at the Cleveland Clinic, which helped with the coping part of RSD, but not the pain. Of course she is taking many drugs for pain, is in pt/ot, pool therapy and symatheitc nerve blocks, four to be exact with no relief, and of course what ever else they send her to. She has had another severe flair up and we went to see Dr. Kirkpatrick at the RSD Institute here in Tampa. We loved him, he has a unbelievable understanding of RSD. My daughter is scheduled for Ketamine Infusions in the next week. I have talked with many other patients that have gone through the Three day four hour infusions and have been pain free for a minimum of 5 months. These are adults.
I know that they are expensive, but here is some advice. I am financially strapped due to all of the medical treatments over the past six years with my daughters fight with RSD, especially taking so long to be diagnosed. But, I liquidated my 403b, they have new laws now, that if you have out of pocket medical expenses they will liquidate retirement funds. The institute I understand will fight with you to get reimbursed by your insurance company. The good thing is that the infusions have been approved by the FDA, if there are people with RSD willing to go through this and show that it works, even if it is only some, maybe we can find a cure for this horrible disease. Dr. Kirkpatrick volunteers his time at the Clinic, he receives no money for treating any patient. The cost is in the surgical center and with the ketamine. It costs a total of $8,000.00. $500.00 for a two hour consultation and $2,000.00 for three days, that you pay before each infusion and then you have 30 days to pay the final $1,500.00.

As a parent I am so scared that my daughter is going to be taking these infusions, but she has a fighting chance to go into remission. If not, at least we have tried...Like I said I live in Tampa, and if anyone is heading to the Institute or needs more information I would love help, you can send a private message if you need help in Tampa. I am 20 minutes from the RSD Institute. On another note, after the 6 years of finding someone that understands my daughters illness, Dr. Kirkpatrick was the only one. We walked away feeling that someone finally believed!

My thoughts and prayers are with all of you and I pray for a cure...

Sandy