Exactly where in the United States are Lithotripsy machines being used
to treat Calcinosis found in the CREST form of Scleroderma, and who
would I contact to arrange an appointment/treatment/evaluation?

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Clarification of Question by ajbuck-ga on 03 Feb 2006 21:56 PST

I forgot to include the word now.  I want to know who is currently
using this technology to treat Calcinosis due to the CREST form of
Scleroderma.  Thank You.

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Request for Question Clarification by pafalafa-ga on 04 Feb 2006 07:24 PST

ajbuck-ga,

The use of lithotripsy for the condition you mentioned seems to be a
very newly-described avenue of treatment.

This 2005 review of calcinosis from eMedicine (which I find to be a
very reliable and comprehensive source of overview information)
mentions only one case of lithotripsy treatment:


http://www.emedicine.com/derm/topic66.htm
Calcinosis Cutis
Last Updated: March 9, 2005 

-----
Electric shock wave lithotripsy was successful in 1 case of
dermatomyositis-induced tissue calcification.

--Although reduction in the size of the calcification was minimal, the
patient's associated pain was completely relieved.

--The physiology for this effect it unknown.
-----


The case cited was in Hong Kong.

You may want to contact the authors of the eMedicine article about
possible treatment options.

There have since been other case reports, chiefly in Europe, but I
have not seen any indication that this approach has yet been tried in
the US.


There are certainly many doctors in the US who treat calcinosis.  And
many who use lithotripsy routinely.  But I'm not sure the two have yet
to meet up, and focus on this treatment technology in the context of
calcinosis as related to the CREST form of scleroderma.


In short, the best I can offer is an overview of the literature as it
currently stands.  This will certainly provide some points of
departure for further contacts with doctors and treatment centers.

But I can't promise to find a doctor in the US with the experience you
asked about.  I'm not sure such a person (yet) exists, though there's
always going to be a first!


Let me know your thoughts on this.

Thanks...and best of luck,

pafalafa-ga

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Clarification of Question by ajbuck-ga on 04 Feb 2006 09:26 PST

Dear pafalafa-ga,
    Thank You So Very Much for your request for clarification.  I had
spent 12 hours online researching this before I turned to Google
Answers.  I had also found the case in Hong Kong, and was particularly
uplifted at the hint of reduction of pain.
    I knew that this would be a tough question, hence if there were a
higher dollar amount to pick from, I would have picked that.
    So, my reply then to your request for clarification, given that
this is so cutting edge, would be as follows.
          1.)Where are the machines made?
          2.)Who would be the appropriate contact or representative for the 
             machines, i.e. the Who, What, and Where.  More than one 
             Manufacturer would be helpful.
          3.)What is the cost of the Lithotripsy Machine, and are there any 
             groups, organizations, foundations, or grants that would help pay 
             for this in the form of a grant or award?
          4.)Is there anybody in the United States that would rent out their
             Lithotripsy machine for this purpose?
   This is particularly important to me, as my Girlfriend suffers from
the CREST form of Scleroderma, and I would do anything and everything
in my power to give her comfort and to help prevent the fear of the
pain associated when a calcinosis arises.
    The researchers at Google have been nothing less than phenomenal
in my previous questions.  But those questions were about basic
queries, some whimsical.  This question is the real deal for me, and
you at Google Research have so many more resources at your disposal,
and any and all comments, too, would be so very much appreciated.  I
have complete faith in your abilities ant the abilities of other
researchers such as Sublime1 and Pinkfreud.  Please feel free to
contact me at any time 24/7.
    I know the information is limited, but your resources are so much
greater than mine.  And some of the researchers do this for a living,
so any input is deeply appreciated.
                 With Deepest Respect and Sincere Appreciation,  AJBUCK-ga

P.S.  Both myself and my Girlfriend have Health Professions
backgrounds, so you can be as technical as you feel you need to be. 
Thanks Again.

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Request for Question Clarification by pafalafa-ga on 05 Feb 2006 09:26 PST

ajbuck-ga,

A lithotripsy set-up is a fairly big deal, and generally requires the
resources of a clinic or hospital.  Here's what a typical set-up looks
like:


http://www.hvlitho.com/DSCN0324.JPG



Even if you could somehow undertake this privately, I'm sure it is
licensed as a medical product and would require special clearances for
its use.


Before I delve into the specific questions you asked about
lithotripsy, I just wanted to check back to make sure it still seems
the best path to pursue.

Since lithotripsy is most commonly used in urology, it may make sense
to have your girlfriend's condition seen at a research hospital where
they have experience with both Scleroderma and lithotripsy.


Let me know your thoughts on the the best way to proceed at this
point, and I'll see if I can find any relevant information.

Best of luck,

paf

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Clarification of Question by ajbuck-ga on 05 Feb 2006 15:45 PST

Dear pafalafa,
    We live near a major Mid-Atlantic area where there are such
Research and many teaching hospitals.  Every avenue has been explored
locally, even having personal friends who are Urologists talk with
personal friends that are Dermatologists.
     I don't think the question can be answered in it's current form. 
I would like to continue to do some more personal research, and then
at a later date re-ask the question with far more comprehensive and
specific parameters.  I thank you for your time and effort.