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doctor in NYC? i'm back, with a new nodule
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05/23/2013 18:17
pixi 
05/23/2013 18:17
pixi 
Re: doctor in NYC? i'm back, with a new nodule

Thank you. I debated a long time before undergoing surgery and only did it because I'm a writer and the constant typing was making the cyst bothersome. In fact, I think I developed the cyst precisely from typing.

Also, the thumb with the nodule was clicking, and the doctor promised the clicking would be gone after surgery, because he removed the "pulley." Well, the clicking never went away, and now the cyst is back. When I went for a follow-up this week, I ended up in an altercation with the doctor when I called him out for having one foot in the hallway, barely even taking the time to examine me. He won't even acknowledge that the clicking is still there, nevermind that the sac must also still be there if the cyst returned!

I've decided not to go back to him and have scheduled an appointment with another hand specialist. Will keep you all posted.

p.s. I won't risk surgery with the feet -- I have 3-4 nodules in one foot and one on the other -- and have for the most part gotten used to them.

05/23/2013 19:52
spanishbuddha 

Administrator

05/23/2013 19:52
spanishbuddha 

Administrator

Re: doctor in NYC? i'm back, with a new nodule

Troublesome ganglions or cysts originating from a joint often recur if the activity causing them continues, even after a surgical repair. I also had this problem, but related to sport and piano. Since you write by typing I don't know what to suggest. Can you investigate dictation software, or is it still cumbersome as it was a few years ago? Or alternatively wear some sort of finger support when typing. Maybe even a different 'keyboard', could be flat screen on a tablet or Dvorak, or ...? Just throwing ideas out. Best wishes.

05/23/2013 22:21
pixi 
05/23/2013 22:21
pixi 
Re: doctor in NYC? i'm back, with a new nodule

Interesting, I never heard of Dvorak (except for the composer!) Unfortunately, I've developed this bad habit of using my middle finger to do most of the typing with the right hand. Weird, I know. I may need to retrain myself.

06/01/2013 09:59
pixi 
06/01/2013 09:59
pixi 
Re: doctor in NYC? i'm back, with a new nodule

Hello, all. A somewhat frustrating update:

I had my appointment with the new doctor yesterday. It was the most thorough examination I've had in the 7 years since I was diagnosed. Definitely Dupuytren's (not a ganglion cyst), and he also felt "pre-cords" in both palms.

However, I was shocked when he said I needed to stick with my original doctor even though I don't want to go back to him. I can't believe I'd never been familiar with this "code of ethics" doctors have of not poaching patients. But what the heck is the point of a second opinion then?

Anyway, the original doctor ordered an MRI just to double check the recurring knuckle pad. Have any of you had MRIs for this?

06/01/2013 20:54
cschieber 
06/01/2013 20:54
cschieber 
Re: doctor in NYC? i'm back, with a new nodule

Hi Pixi. I haven't had an MRI but have heard of others who have, mostly to determine depth for radiation therapy. However, is it really a good idea to go back to the doctor who not only misdiagnosed you but also was somewhat dismissive afterward? If it were me, I'd move on.

If you don't mind looking outside the city, Dr. Damien Davis in Englewood was recommended to me by Dr. Veronica Diaz (who took over Dr. Eaton's practice). He is rather young so probably hasn't seen hundreds of Dupuytrens cases but it may be worth giving him a try. I ended up going to San Francisco for a bit of medical tourism so I have no experience with him. Finding the right doctor is so hard!

06/06/2013 11:12
pixi 
06/06/2013 11:12
pixi 
Re: doctor in NYC? i'm back, with a new nodule

I hear you, cschieber, thank you for the reply.

I don't want to go to that doctor, but the other one won't see me again unless I do, because he says he can't argue with his medical opinion.

I'm going for the MRI today.

Incidentally, has anyone tried any kind of compression therapy for knuckle pads? I woke up this morning realizing I'd slept with my hand under the pillow and the pad looked much flatter. So it gave me the idea of perhaps experimenting with wearing a bandage around the pad while I sleep. But I don't want to play doctor and make it worse!

06/19/2013 01:55
pixi 
06/19/2013 01:55
pixi 
Re: doctor in NYC? i'm back, with a new nodule

Just another update...

Had an MRI of my recurring knuckle pad and spoke with doctor #2 today. He pretty much said I should never have had it removed in the first place. Truly, it now looks bigger than ever and is pink, meaning it's still in "active" phase.

Seeing doctor #1 on Thursday (who did the surgery 1.5 years ago.) I am contemplating asking for a cortisone injection, though I know it hurts like hell and did nothing when I first tried it before surgery.

06/20/2013 19:32
pixi 
06/20/2013 19:32
pixi 
Re: doctor in NYC? i'm back, with a new nodule

I know you're all probably sick of my updates -- as I now seem to be replying to myself.

But for the record: I went to doctor #1 today, and the first thing he told me when he walked in was, "So, how did it go with 'doctor #2'?"

I thought that was unnecessary.

Anyway, he keeps offering me little guidance on the knuckle pad:

1) do nothing
2) remove it again
3) inject cortisone

So I chose 3, even though this didn't work in the past.

The pad now appears slightly smaller, but the joint is still stiff. He told me to come back in two weeks.

$60 a pop in co-pay per visit.

Incidentally, I was initially diagnosed in the UK and never given injections. I went to see a radiation specialist there who refused to perform RT given my age at the time (33). I am now 38, and the radiation specialist I saw two years ago in NY also did not want to do it given that I would still like to have children.

Doctor #1 says it's rare for a knuckle pad to grow back so aggressively like this, but reading up on posts on here from the past, that doesn't seem to be the case.

06/26/2013 16:44
pixi 
06/26/2013 16:44
pixi 
Re: doctor in NYC? i'm back, with a new nodule

Well, allow me to continue my monologue. :)

Just wanted to pop in and say the cortisone injection really helped -- pad smaller, and the overall swelling (active phase) seems to have gone. I'd do it again.

06/28/2013 02:17
cschieber 
06/28/2013 02:17
cschieber 
Re: doctor in NYC? i'm back, with a new nodule

Glad to hear the cortisone helped your knuckle pad. Maybe I'll give it a try. And thanks for the updates. It really helps to see what happens weeks, months and even years after treatment.

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ganglion   because   diagnosed   misdiagnosed   differentiate   clicking   Dupuytren   contracture   partially-bandaged   Sanfilippo   Dupuytren-ish   surgery   possibilities   TRIGGER   radiation   cortisone   knuckle   appointment   exceptionally   misunderstood