| doctor in NYC? i'm back, with a new nodule |
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11/17/2011 04:00
flojo 
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11/17/2011 04:00
flojo
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Re: doctor in NYC? i'm back, with a new nodule
Sounds like yours is active. That is the time to get RT. Keep us posted.
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11/17/2011 04:14
pixi 
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11/17/2011 04:14
pixi
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Re: doctor in NYC? i'm back, with a new nodule
Will do -- my first attempt to get RT, while I was living in London, was unsuccessful. The doctor thought it best to wait -- but I had no nodules then, only the knuckle pad.
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11/17/2011 06:27
LubaM.
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11/17/2011 06:27
LubaM.
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Re: doctor in NYC? i'm back, with a new nodule
pixi:
Really? That's fascinating! Did you have a nodule at the base of the thumb as well?
No, I didn't have a nodule at the base of the thumb, just the trigger finger that stopped on its own. This was years before the DD and LD started.
I also have plantar fasciitis (sp?) on the same foot where I have the LD, but it is currently in remission. I wonder if that is related ? Most of the time I wear good sneakers or SAS brand, well-padded sandals. In 2009 I had RT on my left hand and left foot, and the nodules on the foot are almost gone since then, so no problem with the LD for now.
Good luck with whatever you decide to do, keep us posted.
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11/17/2011 12:56
pixi
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11/17/2011 12:56
pixi
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Re: doctor in NYC? i'm back, with a new nodule
Yep, I have plantar fasciitis on and off, too.
Your situation sounds promising. Thanks for sharing! I'm hoping the radiation center calls me back soon.
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11/21/2011 17:31
pixi
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11/21/2011 17:31
pixi
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Re: doctor in NYC? i'm back, with a new nodule
Hello, all. Just wanted to give a quick update: I'm very excited to report that I just spoke with Dr. Sanfilippo's secretary at the NYU radiation oncology center, and I have an appointment for a consultation this Wednesday. The secretary was exceptionally nice and said they've had several patients come in for the same thing over the past year. I told her I'd found them through this site.
Yay! I'll have him check the nodules on my feet as well. It would be so great to get this all taken care of right here rather than fly to Germany, although I was already considering the vacation possibilities. 
My only other experience with an oncologist was in the UK a few years ago when I was first diagnosed, but that doctor thought it wasn't worth proceeding with RT. I'm looking forward to hearing what Dr. Sanfilippo has to say.
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11/24/2011 01:43
pixi
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11/24/2011 01:43
pixi
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Re: doctor in NYC? i'm back, with a new nodule
Hello, all. Reporting back after my visit today at the NYU radiation oncology center...
I was first seen by the resident, Dr. Grew. He was very thorough and interested in the condition -- I told him all about this forum as well as my experience with the oncologist in the UK. I was very impressed with Dr. Grew and the time he took with me, though he ultimately advised me against RT at this time due to my age (37) and the inherent risks of radiation. When he said he wouldn't recommend RT if I was his sister, I believed him.
Next I saw Dr. Sanfilippo who also examined both my hands and feet and came to the same conclusion. They're both advising RT as a last resort, especially given that there's no guarantee the condition will not progress after RT and that if I needed surgery there could be complications as a result of the irradiated areas.
I'm glad I went and hope I've represented them both correctly here -- especially as they might now be reading!
So there you go, no RT for me (again). Next stop: orthopedic surgeon.
Happy Thanksgiving, everyone!
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12/21/2011 20:26
pixi
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12/21/2011 20:26
pixi
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Re: doctor in NYC? i'm back, with a new nodule
Hello, all. Just wanted to give a (rather surprising) update.
The hand surgeon is saying that my knuckle pad and new nodule are NOT related to Dupuytren's -- he's saying they're actually ganglion cysts, and confirmed this with ultrasound.
Given the presence of Ledderhose (3 lumps total) and my family history of DD, this was very surprising. And it also means I was misdiagnosed in the UK. All this time (5 years!) I thought I had early onset of DD.
The surgeon injected the cysts with cortisone, to no avail. Now I'm scheduled for surgery next Friday, and I'm very concerned. Aside from the pain and recovery period, I'm really worried that surgery will "trigger" the DD anyway (the doc says it's not likely). I have a few more days to think about it, so I thought I would see if any of you have any advice.
This condition is so misunderstood!
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12/21/2011 21:16
callie
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12/21/2011 21:16
callie
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Re: doctor in NYC? i'm back, with a new nodule
Why are you having surgery for a ganglion cyst? Is it painful? Very often they will go away by themselves. I have had a volar wrist ganglion for the last year. A couple of days ago it just disappeared.
I would vote against the surgery.
Edited 12/21/11 23:17
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12/21/2011 21:37
spanishbuddha  Administrator
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12/21/2011 21:37
spanishbuddha Administrator
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Re: doctor in NYC? i'm back, with a new nodule
I have a ganglion cyst in the palm, that is not visible, emanating from the MCP joint, and which I confused as a Dupuytren's nodule when feeling the visible and non-visible lumps on my hand. The cyst feels to me like a nodule, but the German Professor showed me how to tell the difference by palpating the lumps, visible or just felt.
I also have a visible digital mucoid cyst on a toe. Occasionally it gets quite large and even pops, especially after exercise (I play tennis). However I'm 'happy' to leave both the ganglion in my palm and the cyst on my toe alone without surgery. They are sore if I bang them, so I don't.
Why are you considering surgery to remove a ganglion cyst? They do usually diminish if the conditions that led to them, usually excessive joint flexion, do not keep recurring.
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12/21/2011 22:24
pixi
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12/21/2011 22:24
pixi
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Re: doctor in NYC? i'm back, with a new nodule
Thank you both -- I really appreciate it!
Well, the cyst (formerly known as "knuckle pad"!) on the knuckle doesn't show any sign of budging after 5 years.
The one under the thumb also includes audible clicking and slight locking (apparently "trigger finger.") The cyst appeared after about two years of this clicking, so I guess it's my body trying to protect the faulty joint.
I'm a copywriter, so I do experience constant mild discomfort due to both of these cysts. And I'm betting that all my typing has a lot to do with the formation of these cysts to begin with. Vicious circle, or should I say "circles"? 
Argh. Not sure what to do.
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