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

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.

hello there....Jimking
 

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!
http://i615.photobucket.com/albums/t...or1-1tykke.jpg
:hug:

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.

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.

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. :)

I know how hard it is to open up to others about how we feel with this problem. I am also very shy and sometimes there are things I want to express, but i don't because of being shy. If you wife would like to pm me she can. I know we live kinda close. I have gone to GT university, and have thought about Johns Hopkins. but after you saying about the bad experience I'm not going. At this point I think things are at a standstill, and life goes by day by day. I'm along for the ride.

Mary

I am also available for emails if your wife would like to be email buddies. I know I appreciate my emails buddies in NT;however, sometimes, women need to chat with other women about certain subjects. Nothing personal guys:p

Dear Suzy,

http://dl5.glitter-graphics.net/pub/...vvaqyczwmb.jpg

:grouphug:

Thanks everyone. lostmary, keep this one thing in mind about Johns Hopkins is we went to a pain management facility at Hopkins which was dedicated by a private citizen or family bearing their name. Hopkins is very large and possibly would be other facilities much better suited to handle those with RSD elsewhere at Hopkins. The place I would check out also lostmary which is close to you is George Washington Hospital Center in Washington and a Dr. Chin. She was very professional and a very pleasant doctor. She's the head doctor at their pain management facility. :)

HELP; I need an RSD MD in Central Coast CA
 

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!

RSD Institute in Tampa Florida
 

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

I understand
 

Hi! I can understand your wife's sensitivity to talking online, you never know who is reading or whose condition may be better or worse than yours. I feel that my situation is pretty mild in comparison to many of the others that I read about on here. I am sorry that your wife is struggling, but it helps to see others that empathize and understand what you are going through. I have been dealing with RSD for 11 months now. I have had allergic reactions to every oral pain med I have tried thus far. Thankfully my pain is much better than it used to be. I led the children's choir at my church and played piano for our church choir. My injury was to my rt arm and I developed in my entire rt arm and hand. I am predominantly rt handed and have lost most use of my rt hand, but can still cope with help. I am trying to play again to build strength. If I have learned anything through this, it is that you can't let it control you and keep you from living. I am glad that she reads the posts and hope that someday she will feel comfortable enough to post herself. SHe is lucky to have an understanding husband. :)

Sincerely, Another Suzy:winky: Ha!

Need help finding doctor, fredericksburg, va area
 

Hi,
I'm new to this group. I've had RSD/CRPS since 2005 and had a wonderful dr. in CA but after searching for months found one that I was not happy with here in VA. Now I no longer have him either because he has decided not to care for patients with my problem and who are non-surgical.
I am taking strong pain medicine and about to run out but cannot find a doctor close enough to get to on a regular basis since I have to go every month to get my prescriptions. I have many other health issues that prevent most treatments and pain medicine is the way I must go but most doctors in the area only want to do implants. Can anyone help me? I also get spinal nerve blocks periodically. I also have terrible spinal problems exacerbating my pain.
I would appreciate any recommendations of doctors in this area who might be right for me. I am getting desperate.
Thanks so much in advance.

Welcome. You will fins lots of support here! In what part of virginia do you live?

Jim
My daughter had several session of outpatient ketamine with Dr Chin last year with no real results. Something made me keep trying. I read Barby Ingles books, talked to her and talked to my daughters pm doctor at college. We stopped all medications except her Cymbalta and went at it again with amazing success. I then went back to Dr Chin and told her what happened (Dr C does her boosters, college does her inpatient). We went back to the boosters with no pain medication and had total success. We go back every few months and the 3 days always resets her back to between a zero and a one. Maybe you and your wife would consider this. I would be happy to provide you with any info if you decide to try it.

Liz

Calracci, Dr. Edith Q. Bautista-Quint, is on Duke Street in Alexandria, Virginia. I believe her number is 703.823.0063. This doctor has been treating my wife's RSD for 3 years. I realize Alexandria is somewhat of a drive, around 40 miles or so but may be worth it. Although you'd think the DC area would be chock full of doctors who are savvy with RSD we've have found the opposite is true. Yes they're doctors who will treat it but not as many as one would think. Good luck Calracci and welcome to NT. :)

Thanks betsykk. Perhaps I should read Barby Ingles book. It'll be a trick to convince my wife to give ketamine another go, but one never knows. I'm very glad your daughter had great results, what a relief that must be for your family. Again thanks for the advice, and the book! :)

I am from delaware and am traveling to baltimore to Dr. maine at Mercy hospital. I find he and his PA are very supportive and well worth the drive. I have had many sympathic nerve blocks only lasting 7-10 days. We tried a trial stimulator, which I didn't have more then 50% improvement. Another girl with RSD though had excellent results. I also had tried a tens unit, prior to all of this, not thinking I already didn't want things to touch my foot and a tens unit requires something to be on it. (da!)(had a brain fart!) He doesn't do Ketamine and I am not sure I would want it with the side effects. But so far all my treatments have not been very invasive.
anita

Thank you Ballerina. I am in Spotsylvania, Va, near Fredericksburg.

Calracci, did you see my post?

Hi Jim and thank you for the info. I have copied it but am hoping not to have to travel that far. I have a real problem driving that distance because of my rsd in my knees and ankles and my spinal problems and rsd in back. I can't believe how few drs are in this area though I do know that rsd drs are always hard to find so really appreciate the info. I may be forced to travel that far and will definitely call that dr if I can't find a closer one.

Is this dr. one who will agree not to do invasive treatments? I will not do that and am not a good risk for ketamine treatments because of my copd. Implants are totally out for me. I have Sjogrens Syndrome and would reject it but hate the idea and fear infection anyway.

Thank you all for your welcome and please let me know if you hear of a dr. closer to me. I am going to be out of medicine after this month and am really in a panic.

Thanks again.

My wife does not tolerate any invasive treatment at all. Dr. Quint will recommend this or that but is not in the business in selling implants, performing surgery etc. Sometimes Dr. Quint and the wife have spats because she lets the doc know that she is not going to allow any tampering with her body. My wife did have ketamine infusions sometime ago and booster shots from Dr. Quint with no luck. Dr. Quint pushes Suzy to exercise, Yoga, work in the garden, watch what foods one eats etc. Of the many doctors we've experienced in 10 years this doctor was the best fit for Suzy.
There's a member of NeuroTalk who lives in Fredericksburg. She ended up getting a morphine pump implanted and raved about it. She said her RSD pain was about gone. She posted less and less. Her NeuroTalk name is "lostmary". Do a search on lostmary and check out her posts to see if she lists any doctors in the Fredericksburg area. Here is a post she started sometime back. And Good luck! :)

http://neurotalk.psychcentral.com/sh...light=lostmary

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.

Ketamine Infusions
 

Hello,

I am a RN that has a daughter with CRPS. i am working with a seasoned MD and we are starting up a Ketamine infusion center in CA, and we will take insurance. I am excited to do this but need some help. I need to start working with the different insurance company’s to get their take on approvals. I do not want to pressure you, but maybe we can talk?

Dear momofrsd - Where in CA are you planning to start up a Ketamine infusion center?
tx!

I am actually going to see Dr Kirkpatrick for ketamine next month. My mom and I have spent months researching different doctors and it ended up being between Dr K in Tampa and Dr Leverone in CA. Both seem to follow a similar protocal which is important. I understand the issue with insurance but many doctors for the op dont accept it but you can send it into your provider. I think some doctors who do the inpatient and a select few who do the outpatient try to help you to get your insurance to pay. I have researched Dr Getson and Dr Richman both also do this treatment on a reg basis and I think I read of people using insurance
No offense momofrsd but there is no way I would see a new doctor who has not done many ketamine infusions. I want someone who deals with RSD on a regular basis and has a lot of experience with ketamine. The amount of ketamine is so key from what I read.

I went there 5yrs ago & was actually diagnosed w/ Gen. RSD stage 1 entire body stage 2 right side of course its way past that now but there is different things they do there & if I had the $ I'd go back to see Dr. Fitzpatrick myself to be honest. There were people there from several different states just to get treatments & they had good things to say so if I were you I'd call or go to their website it should have all the info you need on there. I wish you & ur wife well best of luck & if you have any other ?s dont hesatate to ask

CRPS and high dose ketamine infusions
 

hello, I have a 14 year old daughter that has had CRPS for 2+ years in both of her feet and legs, causing her toes to become dystonic. As we speak I am sitting in the PICU for the 11th day of her high dose Ketamine infusion. Right now she does not have any pain. She is being weaned down slowly and also given ativan for the hallucinations she has been having, and being only 14 it is hard to understand that they are not real, but it causes her to have a lot of anxiety too. We are so hopeful that the pain remains gone at this time, this is her 3rd attempt at high dose(although they kept her on the high dose longer this time), and she has also had 2 low dose infusions for 96 hours which helped a bit, but nothing compared to this outcome.
I work for an insurance company and had to fight to get this done. For those interested you need to find a MD that will administer the medication and follow you through the hospital stay. They also need to consult pain management, and an internal med MD for things that could go wrong(electrolyte inbalance, keeping your airway healthy to prevent being put on a vent, and then to provide feedback on the weaning process. Once you find these MD’s you have them submit a request to your insurance company with all your medical documentation, things you have done that did not work, the meds you are on, blocks you have had, what your prior level of function is and your high ambitions and wanting to get better to return to work, be able to care for children, etc. Another thing that needs to be given to the insurance company are the clinical research papers showing the efficacy of Ketamine and outcome successes, including the removal of the medications you are on now, decreased ER visits for pain control, diagnostics that will no longer need to be done(given that the Ketamine is successful) It may be denied at first, so you will need to appeal. ADVOCATE for yourself, once the denial is made, ask for an expert professional review to be done again and then even take it to the DMHC or DOI where they really look at the outcomes from getting the Ketamine. I promise it is worth the fight! We need to all stick together on this and educate both MD’s and insurance company’s that Ketamine needs to be the standard of care for CRPS patients. I am a nurse as well as a Case Manager and I do this all day long for my patients that have different disease processes needing treatments that are “one off”. Please let me know if you want to talk or need additional informaiton. You can email me at : kasipes@comcast.net and I will be more than happy to help you. I hope this information provides you with a starting point on your journey to a pain free life!!!! GOOD LUCK