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Not very good experience with doctor at USC Keck Medicine in LA...other referrals??
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07/17/17 18:14
llipinsk 
07/17/17 18:14
llipinsk 
Not very good experience with doctor at USC Keck Medicine in LA...other referrals??

Hello, everyone. I'm new to the forum and am so glad to have stumbled onto the site. I was diagnosed with Dupuytren's about 10 years ago and it is just now becoming debilitating enough in my right hand with nodules forming on my right foot to seek further care and possible surgery. I'm 48 years old and healthy otherwise except for high blood pressure. I went to see a hand specialist at USC Keck Medicine but he didn't seem to know that much about Dupuytrens, wanted to rush me into a procedure through which he would cut into my palm to stop the contracture, and had a terrible bedside manner. His name is Milan Stevanovic and I do not recommend him even though he heads up the hand department there. I found the list of Los Angeles area doctors and wanted to know if there are any other doctors to add to this list of referrals in LA:


    Dr. Ross Nathan, Long Beach
    Dr. Prosper Benheim, UCLA
    Dr. Prashakar Tripuranei, La Jolla
    Dr. Denkler, Larkspur


I don't want to just be pushed into surgery -- I want to have a consultation with someone knowledgable about the disease. Any tips are welcome.

Best,
Lynn

07/17/17 22:04
spanishbuddha 

Administrator

07/17/17 22:04
spanishbuddha 

Administrator

Re: Not very good experience with doctor at USC Keck Medicine in LA...other referrals??

Hi Lynn

Did you see our list of Drs in California who can advise or treat with NA, possibly Xiaflex too? http://www.dupuytren-online.info/NA_list_North_America.html Keith Denkler who is closer to SF is really highly recommended if you can travel, but some are closer to you. We would advise a minimal intervention such as NA or Xiaflex before considering surgery.

Treating LD is more problematic. Surgery really should be last resort when all other options have failed and the condition is too debilitating. For nodules that cannot be tolerated with orthotics, footwear and ongoing pain we would suggest RT be tried. http://www.dupuytren-online.info/radiotherapy_clinics.html

Best wishes SB

07/18/17 02:50
llipinsk 
07/18/17 02:50
llipinsk 
Re: Not very good experience with doctor at USC Keck Medicine in LA...other referrals??

thank you so much @spanishbuddha for pointing me to the list. I have a lot to learn about the disease but I guess I better educate myself bit by bit. First-I have to learn the acronyms! I am really glad to hear that surgery should not be a first resort. It seemed very abrupt to me and the recommendation wasn't provided with any other information about other treatment options.

07/18/17 19:19
BRIANB 
07/18/17 19:19
BRIANB 
Re: Not very good experience with doctor at USC Keck Medicine in LA...other referrals??

sorry for your poor treatment by the Dr. that you visited. I went through the same thing with a hand surgeon,who wanted to rip my hand open , ten years ago. Thank God for this site! It saved me a lot of pain and rehab..and perhaps more.
Had NA done ..20 minutes in and out....still holding up fine...
I did write a nasty letter to the Dr. that first evaluated me....I told him get with the program , put your tools away,stop being concerned with just the $$$ and learn the latest,such as NA..
good luck ..you will be fine ...

07/18/17 19:43
llipinsk 
07/18/17 19:43
llipinsk 
Re: Not very good experience with doctor at USC Keck Medicine in LA...other referrals??

Thanks, Brian...I appreciate it! Its scary to do some of the research but this group seems very supportive! I appreciate your sharing your story of having to go to an unhelpful doctor before finding the right one.

07/19/17 17:59
mikes 
07/19/17 17:59
mikes 
Re: Not very good experience with doctor at USC Keck Medicine in LA...other referrals??

Llipinsk.

I live close to the doctor in Long Beach listed as an experienced practitioner for DD and not far from the UCLA practitioner's office. Although I have no experience with either, I chose to fly up to SF (Larkspur) to have NA performed by Dr. Denkler. It turned out to be one of the best decisions I've ever made. He is HIGHLY knowledgeable, friendly, supportive, and skilled. If you can manage it, I recommend you place yourself in his care.

07/27/17 19:41
bstenman 
07/27/17 19:41
bstenman 
Re: Not very good experience with doctor at USC Keck Medicine in LA...other referrals??

What is unique with Dr. Denkler is that he is an experienced certified hand surgeon who became on of the early practitioners of NA and later one of the first to use Xiaflex. He can evaluate your hand and make an informed an unbiased judgement as to what treatment is best for your hand.

The problem with open hand surgery is the loss of all blood to the hand for the 90 minute duration of the fasciectomy and that often results in permanent nerve and muscle damage. Recovery is also measured in months with this operation as compared to less than 2 days with a NA procedure and about a week with the Xiaflex injections.

I first saw a hand surgeon, Dr. Ronald Gemberling in Campbell, California who only had experience with fasciectomy and he downplayed the risks. I knew that studies had found severe complications with 5-6 percent of the operations and he pretended to be ignorant of the risks and ignorant of the lengthy recovery time needed after the operation. He told me that NA was a high risk procedure which was a lie. He made 3x as much with a fasciectomy as compared to a NA and no doubt that affected his judgement - to the detriment of his patients.

Safest is Xiaflex as least chance of nerve damage. I got the best results with Xiaflex followed within a day by NA. The Xiaflex is more effective where it is injected but there will be areas that still need to be released and that is where NA is a good followup procedure. Adding the NA to the manipulation of the hand the day after the Xiaflex injections adds only minutes of time and no additional cost.

Trick is finding a doctor with experience with both Xiaflex and NA. When Xiaflex was first approved for use by the public I contacted the doctors on the Xiaflex list and hoped to find someone closer than Dr. Denkler. Only 2 had any experience with NA and one was a sports medicine doctor with no experience with Dupuytren's or its treatment. I decided it was best to go to Dr. Denkler and it turned out to be the right decision even with the simple Xiaflex injections as he knew where to best make the injections and the following day was able to do the manipulation of the hand and also to perform NA where there were still problems with the hand.

NA lasted two years on average the first two times I had this done. The Xiaflex alone was done in July of 2013 on my hand with problems remaining. A second set of Xiaflex injections was done in November accompanied by the next day manipulation and NA and 4 years later my hand is still in excellent shape and there is no contracture at all.

Edited 07/27/17 19:46

07/28/17 01:42
BRIANB 
07/28/17 01:42
BRIANB 
Re: Not very good experience with doctor at USC Keck Medicine in LA...other referrals??

your story sounds a lot like mine.... back in 2008 the first hand dr. I saw..wanted to rip my hand open...asked him
" how long it would be after surgery until my hand was back to normal" He responded " whats normal ?"
the next Dr. I went to I asked " do you do N.A. " His response " no I do not,I have to sleep at night " meaning it was too risky.
In any event these clowns are all over..so it sure pays to do your homework....I did ..in 2009 Dr. Eaton did N.A. for me
and I am still do fine...btw...about for drops of blood was lost ....

07/28/17 02:27
llipinsk 
07/28/17 02:27
llipinsk 
Re: Not very good experience with doctor at USC Keck Medicine in LA...other referrals??

thanks BrianB, bstenman and mikes for the comments. Your stories help me feel even more sure I am on the right path. Like a lot of people, I grew up thinking doctors were the final authority and that they also maintained a big picture view of my health. As I've gotten older, I've come to understand that doctors have their quirks and areas of speciality and that looking around and doing research makes a difference when you're trying to get the best care. Thank goodness for web forums like this one, so that we are not all at the mercy of a surgeon who wants to cut our hands open right away.I realize now that I am the primary person who must look out for my own health. Remember that phrase, often attributed to Reagan, trust but verify? That's me, with the different hand doctors I've seen. I really appreciate reading your stories.

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