My daughter has full body RSD. She is 18yrs old. It has taken us 10 yrs to get a diagnoses. The rsd is now everywhere. We went to Dr Kirkpatrick in Tampa Fl. He recommended the 3 day hose dose Ketamine treatment. She is sheduled to do the treatment next month. Has anyone had the treatment and if so how good of results did you get and how long did they last:

If you go to "search this forum" and type in Ketamine you will be able to read the results people had with this treatment. Some positive, some not so long lasting,,,,

Debbie

byates,
I have RSD/CRPS also. It isn't technically full body because it does not affect my legs but it affects everywhere else in my body. I have had three rounds of ketamine treatments--each one a five day course. The first treatment decreased my pain about 25% and lasted for about 2 weeks. The second decreased my pain by about 50% but lasted for less than a week. The third treatment did not help at all even though it was a higher dose. I elected not to have any more beyond that because of the ineffectiveness, the high cost (my insurance did not cover it) and the side effects. Even though I personally did not have a good outcome from it, I have heard of many people who have. In my opinion it is definitely worth a try.
I'm sorry to hear your daughter is going through this at such a young age.
Cricket

Dear Byates,

I have done the inpatient 5 day 3x's w/boosters I have never heard of the "3 day hose dose", but things do change . The relieve I got from the ketamine treatments did help with many symtoms of RSD including pain,especially the spread,the sleeping,fatigue etc. But this is a very serious drug and I feel it's not cracked up to what some doctors say. With that said I would really do a lot of advocation for your daughter. The reason I say this is you stated she has had symtoms for 10 years that's a long time. Most RSD Specialist will say, which I'm sure you have heard, early intervention is key. To start ketamine on a patient who presents symtoms for 10 years I would get a second and maybe even third opinion.

I did all of my treatments at the Hospital for Special Surgery in NYC with Dr. Daniel I. Richman and did my boosters with Dr. Schwartzman in PA. Dr. Richman is a smart, smart guy very nice and will give you a straight answer. Also insurance is an issue with ketamine, I was extremely lucky my insurance company did pay each time. The only thing I paid for was for the daily visits of my doctor for the 5 day stay, which was cheap compared to the whole bill believe me. He would come 3 - 4 times a day to check me, talk to me, bring fellows who are in training to see and talk to me. It was a unique experiecne and yes overall did do a good job. But it's not easy it was tough on my body, but others it's not. Because of the issue with the insurance you don't want to make decisions quickly because most won't pay for it and the cost as you know is very high.

My treatment spread out from 2005 - 2007, today I am able to work PT after being home for 5 years, I never missed working so much, I do go to the gym 3x's a week, take very little meds. and live a realitivly normal life. I still have days but at the end of the day it worked, for me.

I wish you and your daughter the best please just be very carefull and take your time choosing the proper treatment, ketamine is done many, many ways, and the proper doctor. I also have children of similar age a son 20 and a 16 year old daughter.

Please feel free to ask any questions you may have.

Gabbycakes

I'm with Gabby - get more opinions.

I currently get low dose ketamine infusions (I've had 34 to date) and they have definitely changed my life for the better. My RSD was pretty much everywhere by the time I started the treatments, and I was perhaps 3 and a half years into the illness. I had previously responded favorably to lidocaine infusions, which was considered a positive indicator that ketamine would work for me.

I understand that the sooner you start ketamine in your illness, the better the chance that it will work for you. But there are still reports of ketamine working for people that have had RSD for a long time - but their best shot at a good prognosis is with the 10 day treatment. FMichael has posted a link to the article where this data is reported, it is in an article written by Dr. Robert Schwartzman in 2010 (also available in the medical archives at RSDS.org)

Dr. Philip Getson took care of me in Marlton, NJ for my first 22 infusions. He offers the 10 day low dose outpatient protocol that Dr. Schwartzman advocates. He works with insurance companies and his patients on the $$ end of things. I really loved him. I would be happy to provide you with his contact info. Getson waited for months for my insurance company to pay him and his office never harrassed me...he is truly an awesome man.

Once you start the infusions, you generally need to keep getting them in order to "hold" their effect. In other words, ketamine wears off. I am presently getting my treatments about once a month, 2 days in a row, 200 mg each. It has been 10 months since I started. I am back to work on a FT basis after a year's sick leave. I would like to start spreading the time out between infusions at some point to see if I can go longer, but I am terribly afraid of getting sick again and missing work...this month I am actually going 5 weeks...

From what I have heard, Kirkpatrick wants $2500 a day, cash, up front. And then you need to file for insurance reimbursements, if any, on your own. If insurance isn't covering the cost of the treatments, the expense to your family could be significant compared to the benefits.

I am so sorry that your daughter is going through this at such a young age. The very best of luck to you.

xoxox Sandy

Do you feel the Ketamine helped. I know everyone reacts to the therapy differently. Some have said they it did not help them at all. Some it was a miracle. I have one person that did not have to have a booster for a year and a half. When I first heard of Ketamine I thought one treatment and she will be better. After researching it more, I see that she may have to have more. I guess we will find out next month. Right now I will take whatever we get.
I also heard of intense physical therapy helps. Have you heard of that.

Dear Byates,

Yes, I do feel it worked, but in my case I feel some possible damage still resides in my arm from my original injury. Having symtoms of pain is not always RSD, so when 1 person says "it worked great for me" and 1 says, "it's did nothing and was a horrible experience. Who know's what is going on in each persons situation to get such different opinions. I would try and go day by day with Dr. Kirkpatrick and see how she does each day. It's a very hard call. If I was in your shoes and could afford it I would make the trip to NYC and get a second opinion. If you decide to call there, I believe I gave you the website, they will tell you he is not taking any more RSD patients on but I believe he will do a ketamine infusion, 5 day inpatient, and then have the follow up with her current pain managment team or someone else for the boosters. The pain team at HSS do many other treatments besides ketamine, ketamine is properly low on the list. I believe the hospital will only allow one person per week, it's looked at very seriously.

What SandyRI said is very true about treatment v expensive. I don't believe in doctors who want all cash up front. I have stated this before on this fourm but one of the doctors treating me during one of my infusions made a statement about some doctors and ketamine treatment. The statement was an answer to a opinion I asked about this whole ketamine treatment with the boosters and doctors who just do that and there are quite a few and quite famous for it. Without talking against any particular doctor the statement was and this was from a pretty well known doctor, and I quote him, "if thats all they do what do you think". In my situation I was a long time patient of my doctor who did my infusions in NYC and I was never asked for a penny prior to my infusions, I did have some out of pocket but as I said in my previous post my insurance did cover most of it. I don't know much about Dr. Kirkpatrick and I hate to make a negative statement about him because I know your hopes are so high for your daughters recovery but you want real reacovery if it can be reached. Another thing I have learned about doctors, we treat them like they are above us, but medicine is a strange game it deals with human life but it's still a business just like anything else, so I treat it like I treat my business and clients with respect until they don't deserve it anymore.

I truly wish you the best. Keep us posted.

Gabbycakes.

I have not had this but looked into with Dr K. I have mixed feelings on this treatment since overall long lasting positive I have not heard other then on his or other doctors websites. That being said I am in a bad place again and am thinking of seeing him. A concern is that I feel if 100 rsd patients went to him 99 at least would be suggested this treatment. I don't believe one size fits all. Yes we all have the horrid pain but not all the same in how we respond. It also annoys me how is website lists the prices and fees. It is like going for a spa treatment rather then serious medical care. Also the 3 days is 7500 which seems way overpriced and I am thinking they would be repeated. I also don't like how doctors don't accept insurance or make one pay up front. It smells like greed. Ok sorry to be negative. Again after all of what I said I am thinking of seeing him.
I do think with any treatment for rsd one has to really be careful in what they decide to do. I am in a horrid place right now but things can be worse. It seems at the time how can they be but I know from experience they can. I also have been to see some of who are supposed to be the best in rsd treatment. I am big on 2nd opinions but the issue is that when I got 2 opinions they conflicted so I got a 3rd and that was different then the first 2. So now I know each rsd doctor has there "thing". My best pain doctor did not have his thing and really looked outside the box. I responded bad but I don't think it was his fault but it was my body.
Where do you live? What other treatments has your daughter had? Hope what ever she does it gives her relief.

We live in Jacksonville Florida. She has tried several different meds. But nothing like Ketamine. Like I said we just got a confident diagnoses a couple of months ago. It has been a nightmare finding a doctor who would even believe there was something wrong. I am also looking into a physical therapy program in Pittsburg. But we are going to try the Ketamine first. Right now she just needs some relief.

Hi,

My daughter who is now 17 has had two rounds of Ketamine with Dr. Kirkpartrick. He is wonderful. There is a Ronald McDonald house just 15 minutes from him if you need some place to stay. I live in Tampa and close to the RMH. The results were good, at least for my daughter. She has all over body RSD as well. If you have any questions I will be happy to talk with you this weekend. Just pm me your number.

Sandy


QUOTE=byates;747401]My daughter has full body RSD. She is 18yrs old. It has taken us 10 yrs to get a diagnoses. The rsd is now everywhere. We went to Dr Kirkpatrick in Tampa Fl. He recommended the 3 day hose dose Ketamine treatment. She is sheduled to do the treatment next month. Has anyone had the treatment and if so how good of results did you get and how long did they last:[/QUOTE]