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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


VERY disappointed
Sep 18, 2009
Hello everyone,
Just had a situation today that I wanted to share. As I've mentioned many times, I've been seeing an RSD doc down here since September of 07. It's in my feet and I'm on the usual Lyrica (lots) and a brand new medication called Savella. I just got it last week. It's to help with the nervous system. Okay,I've been checking into the whole ketamine infusion thing and I asked my doc about it. I did a post about the UCLA doctor that does it. My doc here sent all my records up to UCLA because the doc up there decides whether or not I'm a candidate. If I am, then I was to receive a phone call. So, mid morning today I got a call from a guy at UCLA -- Dr. Prager's office. He's the guy who does the ketamine infusions. The guy says "Dr Prager has reviewed your chart and wants you to come in for a consult. I say ok. Appt was for Oct. 8th at 1:30 and then he says "oh by the way, we need the 495.00 right now while you're on the phone cuz that's the consult charge and Dr. Prager is out of network. I've been doing some homework on the whole ketamine thing and I'm kinda fuming actually. There are some facts that I would like to change. #1 -- The drug company itself MUST begin an actual legitimate drug study on what is going on. That's the only way it'll ever get FDA approved and getting it FDA approved is a must so that it can possibly bring relief to some. I'm not talking about the coma, this is for the infusion. I think that asking for $495.00 up front is ethically wrong, and he doesn't take insurance. This is also probably related to the fact that it's experimental. I then phoned the surgical center that does the infusions and found out that they charge 2 thousand dollars each. 1 thousand goes to Dr. Prager, and the other thousand to the surgical center. I was told you get your own nurse because it can potentially be risky. What upsets me is they do a 3 day infusion, and if you have success then they do a 5 day. And, they have no data to show me on whether or not this works. I find that totally unacceptable. When the guy told me he needed the 495.00, I told him I was not willing to pay the doctor's Bentley or Mercedes Benz payment and I would not want that kind of a man taking care of me. I then said "Cancel my appt".
I realize those are strong words but RSD is painful and I believe this guy is taking advantage and I think that's just plain wrong. Our options are pretty lousy. Drugs that zap our memory and can put lots of weight on us, or the SCS which doesn't have much merit from what I can tell, the pump which would probably make it difficult for me to remain working. I currently work 15 hours a week in a special ed classroom and I know I'm fortunate to be able to do that. I hurt though and you all know that's no fun. Another option is to begin taking narcotics and I recently tried taking Norco every 4 hours. I practically fell asleep in class.:( I have pain constantly and I try so very hard to have a positive outlook. I'm thankful to have my job, thankful for my doctor because so many don't have the care they need. I've got a great husband of 28 years and 2 wonderful daughters.:angel: RSD is very scary stuff to me.
It's my opinion that we need to try and get the manufacturer of Ketamine to begin a drug study. I don't honestly know how to do that. That's the only way we can find out whether or not it helps us, and for how long. Once that is established, ketamine can hopefullyhelp us more, they can change the dosage to have it be helpful for longer periods of time, etc etc. So I guess I'm writing this tonight because I hurt, I'm frustrated that this RSD is such weird stuff, I'm frustrated that I can't be cured and I'm tired of taking pills.:eek: I'm in a clothing size that I hate because of the medication, and since I'm not walking the 4-5 miles everyday like I used to do -- Both those are reasons why I'm heavy.
Sk8er, a HUGE thanks for your response. I'm going to check out that doctor you mentioned. Glad you're back on the boards. How are you? Did you do the ketamine infusion?
Is there anyone out there who went to UCLA for the ketamine? If so, please write back.
I really vented alot so I want to thank you for reading this.
Take good care and I'll wait to hear from you guys :wave:
Hello popstardiva,
No, your post wasn't too harsh. But, I said a few things the wrong way. I don't want or need a new car. The point I was trying to make was that to me, any MD who doesn't take insurance seems greedy. However, you are right. Dr. Prager has taken an interest in RSD and ketamine and he deserves alot of credit for that since there's only a few doctors that do the infusions. He actually called me today at around 4 and we talked for almost an hour. He didn't want me to think badly of him and he wanted to talk to me about things. He shared with me that, depending on my PPO that my insurance would pay anywhere from 80 to 320.00 of that $495.00 consultation fee. He told me that there will be a ketamine study coming out in around 6 months so hopefully if it shows promising results, then maybe insurance would be much more likely to pay. I think he said that Dr. Swartzman is the one doing the study. He says there's virtually no negative side effects anymore so that seems like really great progress. He was a very nice guy actually and so I'm thinking about things more. I asked about staying up there -- Hotel, etc etc and he said he likes to start the infusion at 7:30 am and we're about 2 hours away. Most are discharged between 1 and 3 the same day.
Your point of view did make me think. Like you mentioned, I think we're at difference places.
I hope all of you have much less pain this coming week. Let's do our best to stay
positive.



Deb
Hi Popstardiva,
You had the ketamine in Philadelphia, right? May I ask you how long it lasted? Was it an infusion that was a 1 day type thing? Or multiple times?
How long have you had RSD? I'm so sorry that it has gone full body for you. I read that on these boards pretty often.
Where in Canada are you? My family and I vacationed in Vancouver, Canada 2 years ago, in April. Such a beautiful city! We were hoping to make it back this coming spring but right now it's not likely. The economy is pretty scary right now plus we have some stuff that needs done on the house. Water heater, update our downstairs bathroom.
Hoping you have a good day,
Deb





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