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Good news in Alabama!
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05/11/2010 21:29
David26

not registered

05/11/2010 21:29
David26

not registered

Good news in Alabama!

First, thanks for all the wonderful help on this board. Especially to Lori and Dr. Crimaldi in Charlotte for taking the time to help me arrange RT. After I talked with Dr. C, he didn’t want me to have to travel so far so he contacted UAB (University of Alabama at Birmingham) and talked with their radiation oncology staff. Apparently he reached the right person. Today I met with Dr. Ruby Meredith and her resident.

Both doctors were unbelievably caring and most interested in my situation. Before my appointment they had researched DC and radiation therapy. They were familiar with Dr. Seegenschmiedt and had prints of his articles. They also knew of Dr. T at Scripps and were planning to follow up with him on his protocol. They conducted a thorough examination and history with me. I knew UAB had a great reputation as a teaching hospital but I was prepared to have a disappointing visit on my attempt to seek RT for DC where it had not been done before.

I go back for a scan tomorrow. I do have to make a decision about whether to try and release the mild contracture in my right pinkie "before" the RT. I'm not sure the hand surgeon will touch it at this point. But if I have the RT treatment I am unsure how that would impact the mild contracture. If I need NA to release it at a later point I wonder if the surgical trauma might induce more problems after the RT.

I'm hopeful the RT will help as my case seems very aggressive. In 6 weeks time I've got 2 large and very tender nodules, other smaller nodules I can feel, the contracture mentioned above, burning in both palms and both soles, and a tightness for about 4 weeks in my R shoulder.

05/11/2010 23:52
flojo 
05/11/2010 23:52
flojo 
Re: Good news in Alabama!

Great news!

My understanding is that the NA done first helps the hand to lay flat for RT. Dr. T said that I did the right thing by having NA first, then RT. Just something to consider.

05/12/2010 00:22
LubaM. 
05/12/2010 00:22
LubaM. 
Re: Good news in Alabama!

flojo:
Great news!

My understanding is that the NA done first helps the hand to lay flat for RT. Dr. T said that I did the right thing by having NA first, then RT. Just something to consider.

What "flojo" writes is true...I am also a patient of Dr. T. and he told me the same...to do the NA first and follow it up as soon as possible by RT.

But here is what happened...

I had successful RT on my left hand last November (there was NO contractures, just nodules, dimpling and lots of itching and burning).... at that time, Dr. T. checked my right hand where I had a cord going to my pinkie, a severly contracted pinkie, plus nodules and dimpling. Dr. T. said to do the NA first on right hand, and come to him for RT afterwards...BUT....After doing NA on my right hand, the palm of the hand became completely flat, there is no cord, no nodules and no dimpling. So I went back to Dr. T. for a consulation and after he checked my hand, he said he would not do RT now, but rather we should wait until something develops in that hand.

So go figure...maybe if you do NA first, you might not need RT right away.

05/12/2010 05:34
wach 

Administrator

05/12/2010 05:34
wach 

Administrator

Re: Good news in Alabama!

Hi LubaM, after NA cords, no longer exposed to the pulling stress, often soften and flatten. But they are not gone. For avoiding recurrence wearing a night splint might be helpful. I wouldn't radiate it because that would cause radiation exposure without probably much benefit.

RT usually aims at growing nodules which is different stage of the disease and different material.

Wolfgang

LubaM.:
What "flojo" writes is true...I am also a patient of Dr. T. and he told me the same...to do the NA first and follow it up as soon as possible by RT.

But here is what happened...

I had successful RT on my left hand last November (there was NO contractures, just nodules, dimpling and lots of itching and burning).... at that time, Dr. T. checked my right hand where I had a cord going to my pinkie, a severly contracted pinkie, plus nodules and dimpling. Dr. T. said to do the NA first on right hand, and come to him for RT afterwards...BUT....After doing NA on my right hand, the palm of the hand became completely flat, there is no cord, no nodules and no dimpling. So I went back to Dr. T. for a consulation and after he checked my hand, he said he would not do RT now, but rather we should wait until something develops in that hand.

So go figure...maybe if you do NA first, you might not need RT right away.


Edited 05/12/10 08:34

05/12/2010 13:28
flojo 
05/12/2010 13:28
flojo 
Re: Good news in Alabama!

David26,

You wrote:

After I talked with Dr. C, he didn’t want me to have to travel so far so he contacted UAB (University of Alabama at Birmingham) and talked with their radiation oncology staff. Apparently he reached the right person. Today I met with Dr. Ruby Meredith and her resident.


Be sure to get their permission to enter their contact information on this website as providers of RT. Several providers of RT and NA have been added by DD patients just in the last year making it better for people all around the country/world.

05/12/2010 14:16
LubaM. 
05/12/2010 14:16
LubaM. 
Re: Good news in Alabama!

wach:
Hi LubaM, after NA cords, no longer exposed to the pulling stress, often soften and flatten. But they are not gone. For avoiding recurrence wearing a night splint might be helpful. I wouldn't radiate it because that would cause radiation exposure without probably much benefit.

RT usually aims at growing nodules which is different stage of the disease and different material

Wolfgang,

Thank you...you are absolutely right...the cord is totally soft and flat, cannot feel it, but also the nodules and large dimple I had in the area also dissapeared. I will be wearing my night brace for a long time, as this is my second NA for the same finger. After the first NA I only wore the brace for about three months and the contracture returned soon after.

So far, the PIP joint is at 15-10 degrees (a great improvement, since it was at 90 degrees before NA), and only a 50% improvement is expected after NA in the PIP pinkie finger joint.

05/12/2010 14:22
flojo 
05/12/2010 14:22
flojo 
Re: Good news in Alabama!

Luba and Wolfgang,
I'm thinking that RT and NA are complementary to each other. It's seeming that they each support the other and rusults may actually be better together.
Is this possible?

Flora

05/12/2010 15:46
wach 

Administrator

05/12/2010 15:46
wach 

Administrator

Re: Good news in Alabama!

Flora, there is a school of thought that claims that but there hasn't (yet?) been any proof of it. personally I doubt it because from my understanding RT works on active fibroblasts while cords onsist mostly of collagen (that's where collagenase, i.e. Xiaflex, is effective).

It is also in agreement with my personal experience: when I had small, active nodules radiated they all vanished, when I had a - still not contracted - cord radiated is did not vanish but kept growing, slower perhaps but RT just doesn't seem to be so efficient on cords.

Wolfgang

flojo:
Luba and Wolfgang,
I'm thinking that RT and NA are complementary to each other. It's seeming that they each support the other and rusults may actually be better together.
Is this possible?

Flora

05/12/2010 15:50
David26

not registered

05/12/2010 15:50
David26

not registered

Re: Good news in Alabama!

I don't claim knowledge on this but this is my take. Better to have RT after NA because the contracture might continue otherwise won't it? Perhaps more slowly though? If no NA is done, then three things, you don't have a good flat surface for RT, there is some evidence that later trauma (NA) might induce more nodules and cord formation (?), and the contracture can continue.

I don't understand the downside to radiating after NA. In my case, I'm not sure if there is a nodule at the PIP of the contracture finger or if it is just a thick cord. If a nodule, I want that area radiated as well.

My one contracture is currently less than the normal threshold for NA but I do have some pain here and there when the cord gets stretched. If I will need to release the contracture, wouldn't it be best to do it now before RT?

I do understand it may reoccur and that is the frustrating thing about this disease. It is almost like a malignancy in some ways.

[Wolfgang, your post above wasn't there when I composed mine]

Edited 05/12/10 18:52

05/12/2010 23:29
flojo 
05/12/2010 23:29
flojo 
Re: Good news in Alabama!

David26,
Good summary. I agree.

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