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Hi, Does any1 know of a treatment to stop the hand nodes reforming after removal?
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08/14/2013 14:38
Jolene 
08/14/2013 14:38
Jolene 
Help New to dupuytren

Hello,
I am new to Dupuytren disease. I have read tons of information. I am certain I am in the very, very early stages. I live in the USA. Atlanta GA area. I am in search of a very experience doctor who can detect DC. I have ledderhose disease. I recently flew to Florida for radiation on the foot. I fly back in 4 weeks for the 2nd round. I will be speaking with the oncolgist once I return. However since I have one tiny nodule I'm condern he will not treat this. It will take a dupuytren trained specialist to diagnosis the underlying surface.

I realize it is of the utmost importance the doctor examining my hands knows exactly what is going on under the surface. I am really concerned about this. To date I have not had luck in finding an oncologist abreast on such early detection. All help is greatly appreciated. Does anyone experience pain on the palm of their hand? I have a burning sensation in the palm of the hand. Sometimes it feels good to hold a cold object. Also does anyone know anything about knuckle pads? Can this be radiated along with the palm?

Please anyone have suggestions.
thank you so much

08/14/2013 14:47
pia2some 
08/14/2013 14:47
pia2some 
Re: Hi, Does any1 know of a treatment to stop the hand nodes reforming after removal?

I live up near Rome, Georgia. But I've been seeing Dr. Kay Kirkpatrick at Resurgens Orthopedics in Roswell. She is off GA 400 on Hembree Road. She was actually trained by Dr. Eaton to do the NA procedure about 10 years ago. Since then she has been doing that procedure as well as surgery for Dupuytrens. She does not use Xiaflex. I have been very happy with her and her knowledge on DC.

I'm waiting for an appointment to see a doctor in Rome who is also highly recommended. Roswell is quite a ways from where I live and that makes it harder to see Dr. K. I really did like her though. You might want to check her out.

~ dawn

08/14/2013 15:02
Jolene 
08/14/2013 15:02
Jolene 
Re: Hi, Does any1 know of a treatment to stop the hand nodes reforming after removal?

Thank you Dawn. I made an appointment with her today. Set for August 28th. I am in the very, very early stages. I am hoping she will be able to detect the underlying surface.
May I ask a few questions:
Have you had treatment for this condition yet?
If so, what type of treatment?
How bad do you have DC?
Is it uncommon for my hands to have a burning sensation?
Do you know anyone in this area that does radiation for this?
thank you so much

08/14/2013 15:13
pia2some 
08/14/2013 15:13
pia2some 
Re: Hi, Does any1 know of a treatment to stop the hand nodes reforming after removal?

Jolene:
Thank you Dawn. I made an appointment with her today. Set for August 28th. I am in the very, very early stages. I am hoping she will be able to detect the underlying surface.
May I ask a few questions:
Have you had treatment for this condition yet?
If so, what type of treatment?
How bad do you have DC?
Is it uncommon for my hands to have a burning sensation?
Do you know anyone in this area that does radiation for this?
thank you so much

On your other thread I did reply that I have had Xiaflex injections in my right hand. I do not think I would opt for that again for various reasons. I have DC in both hands and it is considered advanced and aggressive. I was first diagnosed at 41 years of age and I just turned 50. Since I was diagnosed 'young' and it was aggressive the prediction is that I will have a more severe case of DC.

I believe that the burning and itching sensations are common, especially when the disease is active. I have severe itching every time nodules start popping up.

I don't know much about radiation options. My hands are too advanced for that now. At my last appointment with Dr. K she actually mentioned it. She said numerous patients had been asking about it. I do not remember for sure - so do not quote me on this - but I think she said that IF it was something I wanted to pursue she was willing to do that. However, she did not recommend radiation in general. Again, I think that was what she said. Since it wasn't something I could do, I didn't make note of the details she said. But it's certainly worth asking her about. On my first appointment she sat and talked to me for a very long time. She doesn't ever appear to be in a hurry and she encourages you to ask questions. Dr. K also has a very good nurse, Gina, who is always available by phone. I've called her several times and gotten very quick return calls and had my questions answered. I really like the office (which is huge because there are lots of doctors there), the staff and Dr. K. The Roswell location has their own PT office so I had my hand splints made there. I believe they also have a surgery center there.

Keep us posted on how your appointment goes.
~ dawn

08/14/2013 17:52
Tusk 
08/14/2013 17:52
Tusk 
Re: Hi, Does any1 know of a treatment to stop the hand nodes reforming after removal?

Jolene, I don't recall anyone getting RT in the Atlanta area or in the state of Georgia but there is a good one in Charlotte, NC.

Dr. Crimaldi. You can find more info here. http://www.dupuytren-online.info/radiotherapy_clinics.html
Lori has used him with good success.

08/14/2013 18:15
Jolene 
08/14/2013 18:15
Jolene 
Re: Hi, Does any1 know of a treatment to stop the hand nodes reforming after removal?

Tusk:
Jolene, I don't recall anyone getting RT in the Atlanta area or in the state of Georgia but there is a good one in Charlotte, NC.

Dr. Crimaldi. You can find more info here. http://www.dupuytren-online.info/radiotherapy_clinics.html
Lori has used him with good success.

Thank You so much. Do you know what stage she was in? Did she have both cords and nodules?

08/14/2013 18:27
Jolene 
08/14/2013 18:27
Jolene 
Re: Hi, Does any1 know of a treatment to stop the hand nodes reforming after removal?

Dawn you are awesome. I appreciate your quick response and help. As I stated I have Ledderhose disease in one foot. I flew to new Port Richie Florida for radiation. I have 2 nodules on the foot. Before RT I walked on the side of the foot. Other than work I rarely left the house. After RT the crawly tingle feeling stopped. The nodules are still there but no pain in walking and I no longer walk on the side of the foot. 3 weeks after I return home I notice the nodule on the hand. Within one week I have noticed knuckle pad, cord underneath the surface by touch only. The hand does hurt like a crawling burning sensation. Radiation is the form of treatment I seek. I have had such great success with the foot and I have 3 more weeks before I return for the 2nd round.

So what is your next plan of action with your being so far advanced? Are you in pain? Do you have full use of your hands?

08/14/2013 20:12
pia2some 
08/14/2013 20:12
pia2some 
Re: Hi, Does any1 know of a treatment to stop the hand nodes reforming after removal?

Jolene:
Dawn you are awesome. I appreciate your quick response and help. As I stated I have Ledderhose disease in one foot. I flew to new Port Richie Florida for radiation. I have 2 nodules on the foot. Before RT I walked on the side of the foot. Other than work I rarely left the house. After RT the crawly tingle feeling stopped. The nodules are still there but no pain in walking and I no longer walk on the side of the foot. 3 weeks after I return home I notice the nodule on the hand. Within one week I have noticed knuckle pad, cord underneath the surface by touch only. The hand does hurt like a crawling burning sensation. Radiation is the form of treatment I seek. I have had such great success with the foot and I have 3 more weeks before I return for the 2nd round.

So what is your next plan of action with your being so far advanced? Are you in pain? Do you have full use of your hands?

Right now I'm waiting for the hand surgeon in Rome to contact me. I had a copy of my records sent to his office this week. I'm interested in his opinion on the best approach since my hands are worsening by the week. While I love Dr. Kirkpatrick, it is a long way to drive. If I need to have numerous procedures done, it would be much easier to have it close to home. Of course, I will need to determine if this doctor in Rome is someone I want to treat me. If not, I'll return to Dr. K.

Actually I do have quite a bit of pain in my hands. Dr. K said that was probably due to my diabetes. She gave me a topical gel but I'm not too sure how much it really helps. I don't have full function of my right hand but I manage to do what I need to do. My left is getting worse but I can manage with it okay for now, too.

~ dawn

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