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Hi, I'm new here
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08/26/2010 17:53
TomVirginia 
08/26/2010 17:53
TomVirginia 
Re: Hi, I'm new here

Hi David,
Happy to answer whatever questions you may have.
In the N.A and R.T. left hand I have (had) a very pronounced cord on the palm, two nodules on the palm below the small finger knuckle, one above and another immediately south of the pip joint all on the left hand.
In the R.T. right hand - a slight cord on the small finger with 2 nodules south of the knuckle and a third matching one just south of the pip joint. The ring finger has a nodule south of the knuckle and a barely discernible cord in the palm. Also have a cord in the web between the thumb and index finger.

08/27/2010 02:59
flojo 
08/27/2010 02:59
flojo 
Re: Hi, I'm new here

Quote:
During the thorough consultation I asked about the possibility of a ruptured tendon and was given a simple explanation that the needle and Xiaflex do essentially the same thing different ways and for me to think of the cord either being weakened mechanically with a miniature scalpel or chemically/biologically with Xiaflex. Sort of like the difference of using Drano or a mechanical snake on a clogged drain. Drano is hard to control when it's let out of the bottle while you can control the depth of penetration with a snake.

TomVirginia,
Hilarious! I love your Drano analogy. Very creative!
Hope Xiaflex turns out good results, but we all are watching for the long term results.

Hang in there and keep your sense of humor.

08/27/2010 12:02
TomVirginia 
08/27/2010 12:02
TomVirginia 
Re: Hi, I'm new here

I liked the Drano analogy too - made it easy for me visualize the difference. Only wish I could lay claim but it was the M.D.'s. He had a keen sense of humor which I appreciated (a lot more doctors could use one). We had more then a few laughs during the consultation and it continued as I got my needle release. At one point he had the staff in the hallway laughing, overall it was a very pleasurable experience.
I think we are all curious about the long term effectiveness of Xiaflex. I just know that as I researched it and heard about the 2% incidence of ruptured tendons associated with my particular style of small finger contraction I had little desire to be in the front of the line. As someone in the medical field warned me "just because the FDA has approved it doesn't make it good, smart or the correct option." Just think how many drugs were put out there only to be called back.
Even though risk of a ruptured tendon is small if I was in the small percentile it would have led to surgery and a long recovery period, which is not something I am willing to risk. Adding to that risk was the lack of experience of my local authorized Xiaflex approved surgeon, he has only used the stuff less then a dozen times. Much better for me to hop a budget flight to Florida and see the guy who has tons of experience. My being lucky enough to run into a fellow sufferer much worse off then myself and being able to see the results a few months later of his NA all added up to making this a no-brainer. And to poke some fun at myself, when it comes to my body and medicine it pretty well needs to come down to a no-brainer.
Tom

08/27/2010 23:20
LubaM. 
08/27/2010 23:20
LubaM. 
Re: Hi, I'm new here

Tom,
You make interesting points..."just because FDA approved Xiaflex...doesn't make it good"..and "lack of experience of authorized Xiaflex surgeon".

I too was anxiously waiting for years for Xiaflex to be approved, because my first NA on small finger PIP was recurring and I knew that I had to have a second NA on same finger, or Xiaflex (for me surgery was never a first option)...but even when Xiaflex got approved, I preferred to take the "repeat NA choice" because there is much more studies on long term results of NA than Xiaflex, and the possibility of a ruptured tendon was not something I was willing to take.

Its interesting that the same surgeon that I consulted in 2006 was ready to immediately do surgery on me....yet he was totally opposed to NA...but now he's on the list of approved doctors for Xiaflex... I wander what the logic is in that.

In (at least) five years from now I might be looking at and considering Xiaflex, if needed, but for now...I rather have repeat NA's.

Glad you were able to "hop on a plane to Florida and see the guy with tons of experience"....Dr. Eaton is the best !!!

08/28/2010 01:55
TomVirginia 
08/28/2010 01:55
TomVirginia 
Re: Hi, I'm new here

"Its interesting that the same surgeon that I consulted in 2006 was ready to immediately do surgery on me....yet he was totally opposed to NA...but now he's on the list of approved doctors for Xiaflex... I wander what the logic is in that

When I mentioned NA to the Xiaflex approved MD both he and his trusty P.A. looked at me as if I were speaking Martian. I explained the procedure and they behaved as if I were describing some type of quackery . . . This is a skilled well respected hand surgeon with a new miracle cure in his bag of tricks that he can treat Duyuytren's with and he isn't even up to speed on some well proven minimally invasive and proven technique . . . now there is some logic.

I am immensely grateful for this web site.

08/28/2010 02:54
flojo 
08/28/2010 02:54
flojo 
Re: Hi, I'm new here

This website has helped so many of us with the info needed to make informed decisions about treatment. That is not to say that decisions about what to do are easy. Because of the differences in symptoms, progression and hand function, it is not absolutely clear what to do and when. It is getting clearer as we share results - kind of like making our own research with the documentation of our experiences.

08/29/2010 21:12
brisket 
08/29/2010 21:12
brisket 

Re: Hi, I'm new here

Hi Folks,
I am new to this and not technologically savvy. I stumbled upon this web site looking up info on my husband's feet and lo and behold, I think I found what really is going on with his feet after three to four years. We've been told it's peripheral neuropathy, but I don't buy it now. He also has lumps (that's what I call them) on both soles of feet and doesn't even want to walk anymore. We don't know where to turn. I am intrigued about the different therapies I am reading about and am hoping that there is some quality help in the Fredericksburg Va. area. Should he see a podiatrist first or go straight for the big guns with RT? He shares the same story as so many of you. I am glad he's not alone. He is going to his PCP armed with this info and is hoping the Doc is receptive to this. Maybe he will finally get the proper treatment. Right now, he suffers so much pain in his feet...it is so despairing. Thanks for the great web site and info I am reading. This may point us in the right direction. God Bless.
Laura
PS I chose the character with the knives because I hear my husband say at times he wishes he could just amputate his feet so the pain would go away. I mean no offense to anyone.

Edited 08/30/10 00:16

08/29/2010 22:35
David26

not registered

08/29/2010 22:35
David26

not registered

Re: Hi, I'm new here

brisket,

try this forum which is specific to Ledderhose, may have more info there --->
http://www.dupuytren-online.info/Forum_E...se/index-1.html

also click here ---> http://www.dupuytren-online.info/ledderhose_therapies.html

The following sums up what I've read about Ledderhose, from Dr. Eaton.

Treatment options for Ledderhose include shoe inserts (orthotics) cortisone shots or radiation. Treatment is indicated when foot nodules are painful or big enough to interfere with footwear; otherwise it's usually best to wait and watch.

Also, I've seen reference about cyrosurgery that might be helpful.

Edited 08/30/10 04:04

08/30/2010 00:34
LubaM. 
08/30/2010 00:34
LubaM. 
Re: Hi, I'm new here

Brisket,
Good advice from David above.....read all you can on this Dupuytren Forum in the "Ledderhose section"...also great information on Dupuytrens and Ledderhose on Dr. Eaton's website at: www.handcenter.org

If your husband has only Ledderhose and not Dupuytren's, first of all get a diagnosis to make sure that its Ledderhose disease. Many regular doctors/podiatrists are not familiar with either disease. If orthodics and/or cortisone shots have not helped look into radiation treatment with a Dr. that has experience treating Ledderhose with radiation. There's good information on the menu on the left side of this forum... After you do your reading and have more questions, come back on the forum and ask... you will get many answers from other Dupuytren and Ledderhose sufferers who have lots of personal experiences to share.

Edited 08/30/10 17:15

11/12/2010 00:24
f7sharp 
11/12/2010 00:24
f7sharp 
Re: Hi, I'm new here

Just a followup since I started this thread. I had NA done on Tuesday. Thanks to whoever recommended Dr. McGovern in Port Angeles. She did a great job. I am pretty much healed already except for the half dozen punctures are still slightly visible. And Port Angeles was a far more convenient travel distance than my previous one.

I looked into Xiaflex given the experiences related recently by dave t, CoachG and others. I was very interested to go that route and Dr. McGovern offers both NA and Xiaflex treatments. But after looking at the cost differential the decision was obvious. There was an approximately 20X cost difference as billed to me. The company that produces Xiaflex claims that my insurance would cover it, but wouldn't guarantee that to me in writing. Neither would the insurance company in advance of the procedure. So the doctor's office required that I had to sign a waiver that if insurance didn't cover it that I would. I wasn't about to be the holder of that bag.

Anyway, all is well, I am thrilled with the results and I'll probably be back in another 5 or 6 years (assuming a similar recurrence rate) to see what my options are when I need to do it again.

Thanks for this site and all the contributors.

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