| Any recommendations for Dr. in Los Angeles area? |
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08/20/2010 13:40
can'registernot registered
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08/20/2010 13:40
can'registernot registered
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Any recommendations for Dr. in Los Angeles area?
Hello fellow D folks. First time posting. Have had the nodules for years, but recently developed strands in my right hand (ring finger + affect on middle) and the rapidity of the increase has spooked me. Want to do what I can ASAP. Posting other threads to split my questions by subject.
I've found the list of various Dr.s in the Los Angeles & So Cal areas... can anyone here personally recommend / warn about one or more? I'd probably go with the radiation, injection or NA procedures, I'm estimating I'm at about 2-5 degrees (palm just barely can't touch the table)
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08/20/2010 15:23
LubaM. 
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08/20/2010 15:23
LubaM.
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Re: Any recommendations for Dr. in Los Angeles area?
@can'register:
Hello fellow D folks. First time posting. Have had the nodules for years, but recently developed strands in my right hand (ring finger + affect on middle) and the rapidity of the increase has spooked me. Want to do what I can ASAP. Posting other threads to split my questions by subject.
I've found the list of various Dr.s in the Los Angeles & So Cal areas... can anyone here personally recommend / warn about one or more? I'd probably go with the radiation, injection or NA procedures, I'm estimating I'm at about 2-5 degrees (palm just barely can't touch the table)
In Los Angeles/So.CA area I highly recommend Dr. Tripuraneni for RT. He is chief of oncology and specializes in non-malignant tumors at Scripps Hospital in LaJolla, CA. His website page is:
http://www.scripps.org/physicians/5514-tripuraneni
I had RT on my left hand (multiple nodules that were large and hard and a very thin cord running along the index finger, no contractures on hand) and my left foot (too large, hard nodules on arch of foot) in Nov. 2009. So far, it has stopped the progression of the disease. All nodules are smaller and softer, no more itching, and I can open my hand much wider than before.
For NA in California I would recommend you email pictures to Dr. Keith Denkler (he is in the Bay area, near the Golden Gate Bridge in Larkspur, CA). His info. is posted on the menu on the left side of this page. He is a wonderful doctor and will respond to your emails very quickly. Very experienced with NA procedures.
Don't know much about Xiaflex personally...for me its a procedure that is too new and I'm waiting to see studies on long term results....
You are very smart to looking into doing something in the early stages, especially if you see progression of the disease.
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08/20/2010 20:15
flojo
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08/20/2010 20:15
flojo
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Re: Any recommendations for Dr. in Los Angeles area?
I agree with you about getting treatment early. Waiting for a deformed hand to develop then surgery makes no sense to me.
I had the same docs as Luba - Dr. Denkler for NA and Dr. T at Scripps/La Jolla for RT. I highly recommend them both.
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08/24/2010 14:21
can'tregisternot registered
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08/24/2010 14:21
can'tregisternot registered
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Re: Any recommendations for Dr. in Los Angeles area?
Thanks Luba, flojo!
Any recommendation on how to proceed?
Seems like the Dr. should be the one to recommend if RT or NT is best... go to both and see what they say?
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08/24/2010 21:59
LubaM.
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08/24/2010 21:59
LubaM.
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Re: Any recommendations for Dr. in Los Angeles area?
@can'tregister:
Thanks Luba, flojo!
Any recommendation on how to proceed?
Seems like the Dr. should be the one to recommend if RT or NT is best... go to both and see what they say?
My recommendation is: start by emailing pictures to Dr. Denkler, he will quickly respond and tell you if you are a candidate for NA. If not, make an appointment to see Dr. Tripuraneni in LaJolla for RT.
About the Dr. recommending RT or NA in my experience, usually hand surgeons that are not familiar and do NA will NOT recommend either procedure. I had four different surgeons in the early years when my Dup. first started tell me that they were totally against either procedure....and to wait until the contracture is more severe....big mistake. Don't wait for a contracture to happen, treat it early !!
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08/25/2010 03:32
flojo
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08/25/2010 03:32
flojo
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Re: Any recommendations for Dr. in Los Angeles area?
I say, "Listen to what Luba says." Luba and I have never met, but we did talk on the phone once and emailed each other a couple of time. It seems that we really do think alike. Luba has more experience (Not that she wants it!), as she has Ledderhose's and more severe Dups than I. Our decisions about treatment, NA and RT, have paralleled each other's.
One good thing about Dups - we get to interact with some very caring people.
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08/25/2010 04:51
can'tregisternot registered
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08/25/2010 04:51
can'tregisternot registered
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Re: Any recommendations for Dr. in Los Angeles area?
Thanks both 
My question about listening to Dr.s was more about which of the two recommended should I listen to re: best procedure? They may both say the same thing, which would be great, but they may not. My experience with other doctors is each recommends the procedure they like to do. Sometimes its financially driven, sometimes its that they specialize in the procedure they think is the best to do. When its your gums, there's a lot of shopping around you can do. When its something like this, we are pretty limited where we can go for a second opinion. So I think I'd like to add patient experience as part of that process.
Trust me, I'm not going to ask my general. I've moved, but my previous one told me it wasn't anything to worry about, don't do anything unless it gets to be a problem physically. Looking back, RT would have been a great thing to do about 5 years ago, wish I had done the research on D then to know that.
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08/25/2010 06:36
LubaM.
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08/25/2010 06:36
LubaM.
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Re: Any recommendations for Dr. in Los Angeles area?
Let me understand your situation...you have had nodules for years but now have strands (I guess you mean cords) in your right hand...
you are open to radiation (RT), injection (Xiaflex) or NA and have 2-5 degrees of contracture...and you live in the LA/So.CA area...Is that correct?
Here are my recommendations/opinions based on my own experience...
For RT...Dr. Tripuraneni in La Jolla is experienced with RT and there are not many other Drs. in this area that I know of.
For NA....there are other Drs. in the Los Angeles area, but I can highly recommend Dr. Denkler in the San Francisco area because he is one of the doctors in California with the most experience and he was trained by the French doctors who invented the NA procedure.
Both Dr. Denkler and Dr. T. are wonderful, caring, experienced doctors who are very professional and definitely not into to it for the money. I would trust their opinion and the logical thing would be to do RT first, if possible. If Dr. T. says you are a candidate for RT, go for it, since it can stop the progression of the disease...
Some people report great long-lasting results for NA...others are not lucky. There are many factors, the degree of contracture, the finger/joint affected, the skill of the doctor performing the NA....but I think most of all luck...this is such a weird disease and its so different from one person to another...even from one hand to another in the same person....
I have no experience with Xiaflex...its suppose to work like NA but hopefully have longer lasting results without recurrence...but since it was recently approved by FDA its too soon to tell...you can find doctors in the area trained in giving the injection on their website.
Good luck on whatever you decide...but definitely treat it before it gets worst...you'll be happy you did....
Edited 08/25/10 09:47
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08/25/2010 12:37
flojo
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08/25/2010 12:37
flojo
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Re: Any recommendations for Dr. in Los Angeles area?
Ditto what Luba said.
I would add the Dr. Denkler is a hand surgeon and fur years did full surgery for Dups until he found out about NA. So, he can do either/both, but he prefers the less invasive NA treatment if it will work. According to info from posts on this Forum, he has done NA for greater contracture than many other docs.
If your Dups has become active again, it's a good chance that RT will work. Dr. T will not hesitate to say whether he thinks RT will or will not work. He's honest and experienced.
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08/29/2010 05:12
stillcan'tregisternot registered
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08/29/2010 05:12
stillcan'tregisternot registered
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Re: Any recommendations for Dr. in Los Angeles area?
Thanks to you both, all good info. Yes, Luba, you've summed up my situation. I'll be contacting those docs soon, hopefully will have some good news for updates.
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