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Kaiser Curious in LA...
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07/26/17 04:45
Fluteman 
07/26/17 04:45
Fluteman 
Kaiser Curious in LA...

Hi everyone,

I had a Dupuy diagnosis 2 months ago at Kaiser in Harbor City. Does anyone know of or about Dr. Anthony Leone? I am scheduled for surgery on my right hand 8/24. My pinkie is stuck down at about 135 degrees. My left hand has about 45 degrees of downward bend, but he scheduled that one for surgery in October.

He seemed competent, but should I ask more about other options for my left hand?

Has anyone here seen him or heard of him? Let me know! Thanks!

Jim...

07/26/17 09:31
spanishbuddha 

Administrator

07/26/17 09:31
spanishbuddha 

Administrator

Re: Kaiser Curious in LA...

Hi Jim

Sorry I can't help, but I would explore NA and/or Xiaflex with the Dr as a first treatment option for the left hand. The discussion and his responses might give an indication of his experience and competence treating DD.

If the PIP joint is the main one affected, or the cords are twisted, or entwined with nerves, then these may be valid reasons. There could be others too, but I would want to hear it from the Dr. The more experienced and competent the more they would want to try a minimal intervention first.

The other option is to make a judgement on how the surgery for the right hand goes. But do ask how many he has done, and what aftercare he will line up for you.

Best wishes SB

Edited 07/26/17 09:34

07/26/17 09:46
wach 

Administrator

07/26/17 09:46
wach 

Administrator

Re: Kaiser Curious in LA...

If you are looking for a 2nd opinion, you might see Dr. Keith Denkler in San Francisco who has extensive experience with Dupuytren's, including severely contracted fingers http://www.dupuytren-online.info/needle_aponeurotomy.html (pretty much at the bottom of that page). Alternatives closer to you are Dr. Benhaim in LA or Dr. Nathan in Long Beach. Contact details of all three Drs are on http://www.dupuytren-online.info/NA_list_North_America.html.

Wolfgang

07/26/17 17:01
Alan_Hepburn 
07/26/17 17:01
Alan_Hepburn 
Re: Kaiser Curious in LA...

My experience with Kaiser in Northern California is that they will recommend surgery as the only option. A few years ago they got a new doctor here at my location that offered NA, but they will not do Ziaflex or radiation. Kaiser in general is not interested in what they consider "experimantal" procedures - they tend to rely on the old, tried and true, methods for everything. One can go ourside of Kaiser for a second opinion, but then you have to pay the entire bill out of pocket, which can get expensive. And, if complications arise from that outside source then Kaiser will not treat you.

Alan Hepburn
San Jose, Ca, USA

07/26/17 18:22
mikes 
07/26/17 18:22
mikes 
Re: Kaiser Curious in LA...

Fluteman,

I live near Kaiser in Harbor City but am not a Kaiser member. I strongly recommend your considering contacting the aforementioned Dr. Denkler and scheduling a visit with him if at all financially possible. I had NA performed by Dr. Denkler some years ago (90 degree small finger PIP contracture), paid out of pocket (quite reasonable), including travel expense for two, etc. Fortunately, I was ultimately partially reimbursed (not for travel expense of course) by my insurance company.

07/26/17 23:21
bstenman 
07/26/17 23:21
bstenman 
Most doctors are ignorant and provide bad advice for treating Dupuytren's

Dr. Denkler's offices are about 60 minutes north of the San Francisco airport and about 2 hours drive from my house. I have used his services 4 times and it was worth the drive and staying overnight at a local hotel.

What is most unusual about Dr. Denkler is that he has many years of experience with conventional hand surgery and years of experience performing NA procedures and was one of the first doctors to start doing the Xiaflex injections. He is uniquely qualified to evaluate the most effective and safest course of action for your hands.

Open hand surgery requires the use of a tourniquet which stops blood flow to the hand for 60 to 90 minutes and that is what causes nerve and muscle damage that can be permanent. Arterial clamping helps but most surgeons still do the tourniquet.

NA is far safer but a nerve can get nicked. Xiaflex injections are limited to a single vial per treatment and that may not be enough. I had Xiaflex injections done in July of 2013 and then again in November to fully complete the treatment on my hand.

Dr. Denkler did the second series of Xiaflex injections on my hands and then the following day did both the usual manipulation of the hand but followed that with NA on the hand. The combination of the two was far more effective than either procedure alone, and I say that 4 years later as my hand is still in great shape with no contracture at all.

In 2007 I had to fly to Germany to get XRT on my hands. Flying to San Francisco to get the best possible advice is something I would not hesitate to do in your situation. Don't rely on someone who only does fasciectomies or only does NA or only does Xiaflex as you will not get a knowledgeable recommendation and sound advice as to your options from such doctors.

07/27/17 06:38
Jeff 
07/27/17 06:38
Jeff 
Re: Kaiser Curious in LA...

If you would like to stay within Kaiser, I would highly recommend Dr. Jann Johnson at the San Rafael facility, not very far from Dr Denkler mentioned in previous posts. She treated me in both hands with NA. After 7 years I may soon need to go back to her for a repeat in one hand. If Northern California is too far, you may want to call her office to see who she recommends in the Kaiser system near you. I know she was showing her work to southern California Kaiser doctors while I was being treated.

Note that Dr. Denkler recommended her for Kaiser DD patients. Also note that her bio and Kaiser's system does not seem to know she deals with DD a lot, so demand a referral from from you primary care doctor. I did, and am extremely happy with the results.

Jeff

07/27/17 19:26
bstenman 
07/27/17 19:26
bstenman 
Re: Kaiser Curious in LA...

NA is a less expensive alternative to Xiaflex injections if paying out of pocket. I have seen the best results by far with Xiaflex injections followed the next day with NA. NA works in some areas of the hand but there are areas where there are nerves and a risk of damage to them and this is where Xiaflex is safer.

I had two years of relief with my first NA and with my second NA on my hand. I have had 4 years of relief and at present no need for further treatment in the foreseeable future with my last treatment that consisted of Xiaflex injections on Day 1 and then manipulation and NA on Day 2.

At a minimum I will get 3x the period of relief from the symptoms of Dupuytren's with the Xiaflex (full treatment in my case which took 2 vials) and NA on my hand.

10/17/17 20:16
ondie 
10/17/17 20:16
ondie 
Re: Kaiser Curious in LA...

I am a Kaiser member in Portland, Oregon. I had no trouble getting radiation treatment for nodules covered.

10/17/17 20:54
bstenman 
10/17/17 20:54
bstenman 
Re: Kaiser Curious in LA...

It is important with any surgery to consider both the recovery time and the cost of a lengthy recover in terms of lost income and the potential for long term complications. With NA I had full use of my hands the next day. With Xiaflex it took roughly a week after each treatment to have the swelling down to where I had full use of my hands.

With a fasciectomy the recovery time is 1-3 months unless there are complications from the loss of blood flow with the tourniquet and then there may be no recovery. Not unusual for a person having had this procedure to be unable to squeeze a tennis ball months later.

My NA cost was $1100 and if I had to pay out of pocket I would gladly do so in light of the short recovery time and extremely low risk of complications, when done by an experienced doctor.

With my own experience with doctors is that if they are familiar with procedure A, then they will not recommend or perform procedure B or procedure C or procedure D and the patient is very much on their own to gather information and make the decision as to which procedure they should have done.

XRT for Dupuytren's had been done for decades in Germany but in 2007 in the USA no one was doing this and so I had to travel to Essen to have it done. Needle aponeurotomy as first done in 1787 in England and later re-popularized in France in the 1970's. What continues to amaze me is how a less invasive procedure with less likelihood of complications is scorned by the medical establishment in favor of older and often barbaric procedures.

Edited 10/17/17 21:02

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