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One Hand Radiated and Now Cords in Other Hand
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09/26/2012 14:52
MerryMom 
09/26/2012 14:52
MerryMom 
One Hand Radiated and Now Cords in Other Hand

In July I concluded RT for my right hand with Dr. Elisabeth Weiss in Virginia. The process went smoothly and I would be happy to recommend VCU for radiation to everyone out there. Dr. Weiss has quite a bit of experience treating DC patients. Both of my two nodules have shrunk significantly and I no longer have any tingling in my hand.

This week I was diagnosed with Dupuytren's in my left hand. It has started off the same way, with cords and no nodules. Of course I can't have RT at this point, so I will wait and watch and hope that the left hand does not progress with the rapid speed of the right. With my right hand, the three cords seem to grow noticeably thicker each day and the nodules turned from the size of a pinhead to the size of a large pea in several weeks.

Since my case is complicated by my Reynaud's Syndrome, a condition that might be aggravated and worsened by radiation, I am hoping to get through the cold winter months and observe the potential effects of RT on my right hand. If my Reynaud's is more severe, I will have to examine other options for my left hand. Right now it is all a waiting game.

I did want to share that I was quite pleased with the latest hand surgeon I visited with--the fifth I've consulted about Dupuytren's. He was open to exploring the possibility of connecting me with a radiologist here in Connecticut, at Yale, if I choose to do RT. (Travelling proved to be quite a hardship on my family/children and I wouldn't want to leave them alone again for the ten days of treatment.) Dr. Mark Altman, along with performing traditional surgery for DC, does do needle aponeurotomy. My appointment with him made me completely confident that I will have several options if my left hand becomes a problem. He was extraordinarily kind and compassionate, something I had not experienced with the other physicians who all dismissed me quickly, telling me to return when my fingers contracted. [Note to Wolfgang--I'd like to add him to the list of doctors who perform NA. How do I accomplish that?]

Just wanted to get Dr. Altman's name out there to others in my area of the country. As so many of us know, it can be really difficult to find the right doctor when it comes to our condition.

Amy

09/26/2012 15:39
Larry 
09/26/2012 15:39
Larry 
Re: One Hand Radiated and Now Cords in Other Hand

What was the RT concept of Dr. Weiss ? Did you ask her also to treat the other hand ?

09/26/2012 15:45
MerryMom 
09/26/2012 15:45
MerryMom 
Re: One Hand Radiated and Now Cords in Other Hand

I had five days of RT, 3 gy/day in May. She requested that I return in six to eight weeks, but my schedule did not permit. I had my second round of RT twelve weeks later for a total of 30 gy. Seems to be the exact protocol done in Germany. When I completed my treatment for my right hand in July, there were absolutely no signs of the left hand having DC. The cords appeared in my left hand only three weeks ago. Since I have no nodules yet, I am not currently a candidate for RT as I understand that I need to have "active" nodules to undergo radiation.

09/26/2012 15:49
Larry 
09/26/2012 15:49
Larry 
Re: One Hand Radiated and Now Cords in Other Hand

MerryMom:
I had five days of RT, 3 gy/day in May. She requested that I return in six to eight weeks, but my schedule did not permit. I had my second round of RT twelve weeks later for a total of 30 gy. Seems to be the exact protocol done in Germany. When I completed my treatment for my right hand in July, there were absolutely no signs of the left hand having DC. The cords appeared in my left hand only three weeks ago. Since I have no nodules yet, I am not currently a candidate for RT as I understand that I need to have "active" nodules to undergo radiation.

Were both hands and feet examined carefully by Dr. Weiss ??

09/26/2012 15:50
callie 
09/26/2012 15:50
callie 
Re: One Hand Radiated and Now Cords in Other Hand

MerryMom,

What do you do for the Reynaud's Syndrome? Do you use Procardia (nifedipine)? That was a miracle drug for my daughter for Reynaud's.

09/26/2012 15:57
MerryMom 
09/26/2012 15:57
MerryMom 
Re: One Hand Radiated and Now Cords in Other Hand

Larry - I had four hand surgeons examine both my hands here in Connecticut. At VCU two doctors checked both of my hands during each visit. All of these doctors saw me within a six week period. I've never had my feet examined. For sure, my left hand was completely fine until just weeks ago. With my right hand, the cords appeared and then things went incredibly quickly. From one cord, to three cords and two very active nodules all within several weeks. The doctors all said they'd seen kind of progression happen only rarely. Just hoping my left hand is on the slow track!

09/26/2012 15:59
MerryMom 
09/26/2012 15:59
MerryMom 
Re: One Hand Radiated and Now Cords in Other Hand

Thanks for the info, Callie. I have never been prescribed anything for my Reynaud's! I am going to sit down and start reading about the medication you mentioned. At this point my Reynaud's has been a minor annoyance, happening only about a dozen times each winter. But if it gets worse, I am happy to know there are some meds out there.

09/26/2012 16:49
callie 
09/26/2012 16:49
callie 
Re: One Hand Radiated and Now Cords in Other Hand

Procardia is a drug that is primarily used for heart conditions. Not all Drs. seem to be aware of this beneficial use for Procardia. Our family Dr. gave my daughter a prescription for Procardia about 20 years ago. She only uses a pill when she will be exposed to cold conditions. Like you say, maybe a dozen times a year. The pill almost immediately starts the blood flow in the fingers. She just keeps a couple of pills in the car, or wherever convenient. So one prescription would last for a couple of years or until it expired. She has experienced no side effects and like I stated, only uses it on rare occasions when being exposed to the cold.

http://www.rxlist.com/procardia-side-effects-drug-center.htm

Edited 09/26/12 19:54

09/26/2012 16:53
MerryMom 
09/26/2012 16:53
MerryMom 
Re: One Hand Radiated and Now Cords in Other Hand

Thanks so much for the additional info! Was reading about the medication and worried about the quantity required of four times a day. Great to know it can be used only when I'm having a flare up. Will talk to my primary MD next week.

09/26/2012 17:50
MerryMom 
09/26/2012 17:50
MerryMom 
Re: One Hand Radiated and Now Cords in Other Hand

Back at Larry... Just wanted to mention that one of the ortho doctors who examined my hands back in April is on the Board of Trustees of the Dupuytren's Foundation. He is, reportedly, one of the top NA docs in the Northeast. I went into New York City to discuss NA as I was considering all of my options. Anyway, he said there was no sign of DD in my left hand at that time.

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