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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • RSD specialist in SD, CA

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    Old 08-01-2010, 04:09 PM   #1
    rmr92021
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    RSD specialist in SD, CA

    I am looking for a Doctor specializing in RSD in San Diego, CA.

     
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    Old 08-15-2010, 03:47 AM   #2
    RoseinSanDiego
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    Re: RSD specialist in SD, CA

    Hi,
    Franklin Kozin is an RSD specialist in San Diego. Hes in the Anderson building over at Scripps. Its right next to Scripps Green Hospital. He knows his stuff. I have had RSD since 2007, and I have been on meds since then. I work 15 hours a week in a classroom, and I am walking. My rsd is in my left foot.

     
    Old 08-15-2010, 10:58 AM   #3
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    Re: RSD specialist in SD, CA

    Quote:
    Originally Posted by RoseinSanDiego View Post
    Hi,
    Franklin Kozin is an RSD specialist in San Diego. Hes in the Anderson building over at Scripps. Its right next to Scripps Green Hospital. He knows his stuff. I have had RSD since 2007, and I have been on meds since then. I work 15 hours a week in a classroom, and I am walking. My rsd is in my left foot.
    Thank you for the response. We discovered Dr. Kozin and consulted with him last week. Unfortunately he was unable to provide any magic bullet for this case (also left ankle). My wife already has an implanted pain pump, neural stimulator and is taking oral neurontin, Lyrica, morphine and a number of other pain meds. Dr. Kozin felt there was nothing he could do, but suggested and experimental infusion program being done at UCLA. Thanks for your recommendation.

     
    Old 08-15-2010, 12:00 PM   #4
    RoseinSanDiego
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    Re: RSD specialist in SD, CA

    Hello,
    I am very sorry to hear that. The UCLA ketamine infusion program is run and done by Joshua Prager. When I spoke with him on the phone about 6 months ago, he was willing to discuss this treatment with me. However, it's 1K to him, and 1K to the outpatient hospital. Not covered by insurance at that time but...Dr. Kozin did tell me that there is FINALLY a legit medical paper in regards to having success with this so maybe now it's covered. Its worth a try. There are people who have success with it for 3 months, and there are people who have no success with it so I wasn't at a point where I really needed it. Your wife would have her own nurse for 8 hours and they infuse for multiple days. If she does this treatment, can you please have her post how she felt afterwards, etc. I take Lyrica and Savella. Savella is pretty new fibro drug and I don't have fibro but I'm having better luck since Dr. Kozin doubled my Savella. May I ask if your wife is on SSI/SSD? I wish you both blessings and the best of luck. Please have your wife post it if she gets that treatment. Thanks!

     
    Old 08-15-2010, 12:06 PM   #5
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    Re: RSD specialist in SD, CA

    Hello again,
    How long has your wife had RSD and where did she go for the implanted pain pump? I've been thinking about that treatment as well. May I ask what a neural stimulator is? Im familiar with the SCS (spinal cord stimulator), but not neural. Thank you very much.
    Deb

     
    Old 08-16-2010, 12:31 AM   #6
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    Re: RSD specialist in SD, CA

    Quote:
    Originally Posted by RoseinSanDiego View Post
    Hello again,
    How long has your wife had RSD and where did she go for the implanted pain pump? I've been thinking about that treatment as well. May I ask what a neural stimulator is? Im familiar with the SCS (spinal cord stimulator), but not neural. Thank you very much.
    Deb
    She has had RSD for about 5-years following shattering her left ankle. Both implants were placed by Dr. Michael Huntley in Mission Valley of Huntley Pain Specialists 1-619-325-1161, We have seen several of the pain specialists, neural, orthopeadic surgeons in the county...Scripps, Sharp, Alverado, UCSD etc. None have been successful so far, so we keep exploring.

    The neural stimulator is a generic term for the SCS you are familiar with.

     
    Old 08-17-2010, 01:00 AM   #7
    RoseinSanDiego
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    Re: RSD specialist in SD, CA

    Hello again,
    I wish you both well in your search. It sounds like your wife might be a candidate for Dr. Pragers ketamine infusion program. I am very hopeful for a treatment that gives ALL of us success, and also a treatment that is covered by insurance. Right now each infusion is $2,000.00 up at UCLA by Dr. Prager and because they are not FDA approved, insurance will not cover them. When I spoke with Dr. Prager, he said he recommends like 3 of them the first time and I guess he takes it from there, depending on whether or not they help. I was also told he can be a bit of a salesman. I understand that this ketamine stuff can be very very dangerous and that its in its infancy but goodness sakes -- Who can afford 2K for each infusion? It gets me upset that insurance just turns its back on something that can be helpful to some with RSD. But then again, I can understand their hesitancy if it doesnt help everyone. I think that this ketamine is where all the research is headed though and I know there is a recent study on ketamine that shows success on a consistent basis so maybe we are not that far off from having insurance cover it. They have eliminated the chance of psychosis by giving a combination of drugs with it, and it wasnt that long ago that patients that had this treatment risked permanent psychosis. That is a really scary thought!!
    Keep me posted,
    Deb

     
    Old 09-05-2010, 12:56 AM   #8
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    Re: RSD specialist in SD, CA

    Quote:
    Originally Posted by rmr92021 View Post
    Thank you for the response. We discovered Dr. Kozin and consulted with him last week. Unfortunately he was unable to provide any magic bullet for this case (also left ankle). My wife already has an implanted pain pump, neural stimulator and is taking oral neurontin, Lyrica, morphine and a number of other pain meds. Dr. Kozin felt there was nothing he could do, but suggested and experimental infusion program being done at UCLA. Thanks for your recommendation.
    Hello,
    Great to hear that there is such a thing as rsd specialist. I live in mission viejo ca. To date I have only had the stellate ganglion blocks, many different injections and xrays&mris. I have thoracic outlet and rsd. Rsd more a promblem than tos. I am going to check out your rsd specialialist @ scripps and see how that goes. I will report if I have any luck. I'm concerned about insurance because have been on leave from work for 8 months now so transitioning into cobra=( already in extreme debt due to this so getting furthing in debt is just like blinking, keeps happening, have to endure to get some answers possibly some help. Going to look into this asap. Thank you very much. Will report back either way. If anyone else knows of any other rsd specialists or knowledgable ppl my eyes&ears are wide open.

    Hope you all have happier days ahead of you!
    Sincerely,

    Kerry

     
    Old 10-22-2010, 08:45 AM   #9
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    Re: RSD specialist in SD, CA

    Quote:
    Originally Posted by RoseinSanDiego View Post
    Hi,
    Franklin Kozin is an RSD specialist in San Diego. Hes in the Anderson building over at Scripps. Its right next to Scripps Green Hospital. He knows his stuff. I have had RSD since 2007, and I have been on meds since then. I work 15 hours a week in a classroom, and I am walking. My rsd is in my left foot.
    I have RSD in left lower foot/ankle Want to see a specialist in San Diego or LA?? Im on cymbalta, topamax, and amitriptalyne but getting NO RELIEF. I am on SSDI and get Medicare starting Dec 1, 2010. Want to get into someone in December/January when I have the insurance. I am in Idaho where there are NO MDs who know anything about RSD. Please advise??

     
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