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Newly Diagnosed in NYC - need help and direction regarding radiology
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01/04/2009 22:38
myway53 
01/04/2009 22:38
myway53 
Newly Diagnosed in NYC - need help and direction regarding radiology

"I am a 55 year old female living in NYC and I was recently (last month) diagnosed with Dupuytren's in both hands. My right hand has one bump and I have several in my left hand. I saw a hand surgeon and he suggested that I do nothing and just watch my hand for flexibility. After reading the posts on the website for the past several weeks I am quite interested in Radiology Therapy. I would appreciate hearing any comments and recommendations for NYC. I noticed one post mentioned A Dr. Cuttino at St. Vincent's in NYC and I also saw the name of Dr. John Rescigno in NYC listed under clinics. How do I go about starting this therapy. Do I make an appointment with the radiologist or should I see a surgeon first? I'm reading that time is important for this procedure to be most effective. All suggestions are greatly appreciated. Also, I've been experiencing some discomfort in my feet and I'm wondering if I could have Ledderhouse as well. Would a radiologist look at my feet as well?

Thanks for any help. I've been kind of panicking for the past couple of weeks and now I'm ready to take action."

01/05/2009 09:33
wach 

Administrator

01/05/2009 09:33
wach 

Administrator

Re: Newly Diagnosed in NYC - need help and direction regarding radiology

Quote:



... I noticed one post mentioned A Dr. Cuttino at St. Vincent's in NYC and I also saw the name of Dr. John Rescigno in NYC listed under clinics. How do I go about starting this therapy. Do I make an appointment with the radiologist or should I see a surgeon first? I'm reading that time is important for this procedure to be most effective. ...



I am not an expert on the US medical syste, but I would think that seeing a radiotherpapist who is experienced in treating Dupuytren or Ledderhose, like Dr. Rescigno in NYC, should be sufficient. By the way, starting treatment a month sooner or later doesn't really make a difference, waiting another 10 years would.

Wolfgang

01/05/2009 12:47
MARY

not registered

01/05/2009 12:47
MARY

not registered

Re: Newly Diagnosed in NYC - need help and direction regarding radiology


Hi newly diagnosed! I have dc in my right hand and both feet. I saw Dr. Rescigno about radiology. He is a cancer specialist and knows very little about dc. He advised me to see the physician (also listed on this site) in Richmond Va., can not remember her name, however, sorry.

01/05/2009 13:11
MARY

not registered

01/05/2009 13:11
MARY

not registered

Re: Newly Diagnosed in NYC - need help and direction regarding radiology



I will also mention that I have had dc for 4 years....I have seen the best of the best in hand surgeons, specialists. All reports are to watch the progress. I have nodules in my rt. hand, however, no cords. Still, my rt. hand is weakened We certainly have an odd malady! By the way I'm 51, and a veteran of this.

01/06/2009 03:26
MyWay53

not registered

01/06/2009 03:26
MyWay53

not registered

Re: Newly Diagnosed in NYC - need help and direction regarding radiology

Mary & Wolfgang,
Thanks for the comments/suggestions. I am so very confused right now that I don't know which direction I'm going in (circles right now). The more I read, the more confused I become. I guess I'll continue to keep reading all the posts and other information until I'm able to grasp a greater understanding of this disease. Only through knowledge will I be able to make some informed decisions and this support website seems to be the best source of information for me.

As I mentioned, I was diagnosed quite recently (late November) and the hand surgeon I went to advised me to "go live your life" and watch and wait. All the posts about radiation suggest otherwise, stating that radiation is most effective in the early stages of this disease which is where my confusion begins.

01/06/2009 09:13
wach 

Administrator

01/06/2009 09:13
wach 

Administrator

Re: Newly Diagnosed in NYC - need help and direction regarding radiology

Very few surgeons are aware of radiotherapy as a means of treating initial nodules. They just haven't heard about it. Dupuytren Society tries to spread information about treatment options but it's sure a long way to go.

If you have questions, keep asking them in the forum and have a look at the info on our web site.

Wolfgang

01/06/2009 15:23
MARY

not registered

01/06/2009 15:23
MARY

not registered

Re: Newly Diagnosed in NYC - need help and direction regarding radiology

hello again, The Dr. whos name I could not remember is Dr. Cuttino, in Richmond..she is listed on this website with her number. Dr. Rescigno told me she has much more experience treating dc and therefore stats on success with radiation. I also saw Dr. Hurst @ Stoneybrook about enzyme injections...no luck there...and Dr. Weiland at columbia/presb. a hand surgeon..he said just watch the progress. Still searching for a way to ease my "old mans claw" my family gets a big laugh out of that one!

01/07/2009 15:47
myway53 
01/07/2009 15:47
myway53 
Re: Newly Diagnosed in NYC - need help and direction regarding radiology

Mary, Wolfgang & Newman,
Thanks for the additional information regarding doctors names & treatments, etc. As I stated, I am very interested in radiation therapy in NYC. I am trying to figure out how to email a member directly. Could someone please advise how to send emails through this site? Mary, I have a few additional questions regarding your experiences since you seem to have visited doctors in the NYC area. You mentioned that after 4 years you are still in a watch and wait situation. I have no idea how quickly or slowly this disease progresses so I'm still in a panicky state and would like to know a bit more about your experiences in NY.

Thanks so much for all the valuable information.

Barbara

01/07/2009 18:00
Megan 
01/07/2009 18:00
Megan 
Re: Newly Diagnosed in NYC - need help and direction regarding radiology

Hi Barbara,

Just wanted to send you some moral support. I was in a completely panicked state when I was diagnosed with this in April, and there was no one here in Seattle with whom I could discuss all treatment options. It seems like nearly everyone on this site receives the "Watch and Wait" advice from hand surgeons. I did receive radiation in Boise, and that has given me a lot of peace of mind.

Best wishes to you,

Megan L (Bellevue, Wa).

01/07/2009 18:28
myway53 
01/07/2009 18:28
myway53 
Re: Newly Diagnosed in NYC - need help and direction regarding radiology

Megan,
Thanks for the note of moral support. How are your hands since receiving the radiation? Do you feel it has slowed down any progression? Are your feet affected also?

Barbara G (NY)

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