5) Anyone who feels strongly that others should know about the incredible resources available on DDSG should notify those who they feel would benefit from membership in our group via PM with a link to DDSG or simply use the "add member" feature to bring them in. Most groups do not allow links to other groups in their newsfeed and will remove them as they are a distraction to the work of that group and can splinter the larger community.

We hope the above reasons for keeping our global map exclusive to DDSG makes sense to everyone.

%d comments
  • I, too, voted yes on all points. Please don't hesitate to contact us for physician information because someone is almost always on line!

  • In total agreement Leslie! So much work has gone into this map, and other resources only makes sense to have this information reside here. We can always personally help anyone else locate a doctor if they simply request.

  • Agreed - Thank you

  • Totally understand your point. I see you have a few providers in southern California....could i get their info (for myself and daughter).

  • Of course Rochelle Denson, would you please give us the city state and zip where you are looking?

  • Well my zip code is 92571, Perris CA....the next major city next to me is riverside, CA, but will go anywhere is southern California....LA, San Diego....

  • Right on!

  • Rochelle Denson, are you looking for a Radiation Oncologist in your area.

  • Rochelle Denson I'm sorry I missed this response. I'm thinking the best person to ask is Dr Denkler at the Coffee Talk on April 23rd. He will likely know the very best docs for you to see in California since he is in San Francisco and is well connected with the local hand societies there. Would be better to get his suggestions I think than to just randomly choose someone in southern CA. I really respect his opinion.

  • Luba Marmorstein a doc for her young daughter just diagnosed. :(

  • I'm looking for a Dr for RT for DD and Lederhosen treatment in College Station and Houston, TX. Both are close

  • Xxxxxxx Yzzzzzz could you please connect with Laura and share some of your research?

  • Xxxxxxx Yzzzzzz - Dr. Shalin Shah at MD Anderson has treated some of our members including Leslee Miller Here's his link:

  • I noted Dr. Shah below and couldn't tag you. Wanted to make sure you saw the link.

  • We moved 2 weeks ago to Denver, Co area. Need to find a dr for LD treatment. Currently in Thornton, 80233

  • Xxxxxxx Yzzzzzz may be a great resource to you Shelly Beshears. Best thing to do is start a new thread and share pictures and tell us more about how long you've had the disease if you currently have contracture, family history how old you are etc that way we can easily find your thread again and load you up with information and resources

  • So I am just now seeing that you have LD only? I know of no podiatrists in Denver. Best thing to do is go to our files and read through our Ledderhose Corner so that you can read what other members have done for pain and footwear modification and what treatments they have pursued. We have a transcript from a coffee talk with our forum expert podiatrist as well.

  • Dr. Mark Chidel is a Radiation Oncologist who could treat your LD. /c/chidel-mark-a/

  • Thank you!

  • Xxxxxxx Yzzzzzz are welcome. If you are new to the idea of trying Radiation Therapy for LD, please go to member stories in Files and read my story. I chronicle my journey from diagnosis to treatment and the story is filled with valuable links. I have DD and LD.

  • Thank you, Leslie. My dad also has both. For now it's just LD for me, but I look at my hands daily. The DD started with him around the age I am now.

    My feet nodules continue to grow and multiply so I know it's time to look at treatment. All I've had to date is an MRI ordered by a podiatrist in my previous location, who knew nothing about this disease. Thank you for all of your work and I will definitely go to your story.

  • Sorry, didn't realize :(

  • Also, Shelly Beshears, Dr. John C. Sohayda at SkyRidge Radiation Oncology (down on the far south side of the Denver metro area) is who I'm seeing for the DC in my hand; he's a REALLY good guy and would no doubt be able to treat the LD as well. He treats both Kaiser and non-Kaiser patients. I think he also has an office downtown Denver. He's at (303) 338-4545 or 720-225-4200, or else you can call his incredibly helpful and pleasant assistant Nurse Renee Goodnight at 720-225-1786.

  • I **WISH** I knew a podiatrist who treats LD around here ... I haven't found one, yet ... (I've got both the DC and the LD, too.)

  • Thank you!!!

  • Thank you so much!!

  • I miss access to the map.

  • What can we help you find Calvin.

  • I was going to look for the woman commenting from NS. CA

  • That's very nice of you Calvin if you tag in admin we can get the information. My power went out so I have limited access at the moment

  • I met Dr. Shah today!!! He contacted you for advice. He will perform RT on my left hand and 2 feet, but my right hand is worse. I have to find a surgeon to xiaflex/needle my right.

    Looking at surgeon recommendations. I'm willing to travel anywhere for a good doc!

  • Xxxxxxx Yzzzzzz that is so exciting and isn't he so wonderful? So glad to have your update Laura. What kind of insurance do you have and how far can you travel. Have you met with Dr. Harris Rose yet

  • I have Aetna POSII . I will call Dr Rose tomorrow for an appt. I live half way between Houston & Austin. I don't mind taking a flight anywhere for a good Hand Dr. Familiar w/what I need. I have my planning meeting w/Dr Shah tommorrow. He will do a cat scan first. He's so kind!

  • Xxxxxxx Yzzzzzz take the list of questions to ask your perspective hand surgeon that are in the welcome message link. I'm not sure I know of anyone who has seen Dr. Rose. If he ends up not being a good fit the top two hand surgeons would be either Dr. Denkler in larkspur ca for Dr. Pess in NJ. If you are going to have any before your RT please look in our chapter on RT with the forum experts discussion on timing after na x or surgery.