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11/10/2011 04:46
debrr 
11/10/2011 04:46
debrr 
More questions...

Hi everyone, I know I haven't been around for a while....sometimes you just want to forget about having this disease, you know? My feet are acting up again...so back to reality... Hope you know I do think about all of you on here though and hope someone is making progress... I would love to hear about that!!
Can someone explain what RT does to the cords?? I know about what it is suppose to do for nodules and growth. Are you suppose to do another type of treatment for the cords?
I am now wondering if it is better to have feet amputated rather than going for surgery????
Best wishes to all!

11/10/2011 05:38
Christl 
11/10/2011 05:38
Christl 

Re: More questions...

Hello Debrr,
So sorry you are having such a hard time with your feet. Have you had any surgery yet? I am sure there are lots of people out there who had surgery and all went well. I guess before amputation I would consider surgery. I just had RT done on my hands about 2 month ago and I am also wondering about the cords. Seems now my cords, in particular my left hand, which was my good hand, are coming out. I thought RT would take care of them as well, but some people here on this forum say, that RT does nothing for the cords only nodules. I am wondering, just as you, now what? I will go for my second round in December and ask Dr. S about that. I read by someone that her cords also disapeared after RT, so go figure. This is a crazy disease. Seems what works for one, might not work for another.
I don't have an answer, but I am thinking of you and hope you will get some answers to your questions. If I remember correctely, you also had RT done, but not the second round. What about going back for the second round? This disease has been around forever, but there is no real answer for us on what to do. I am more or less new to this, started in June, and decided that RT would be the way to go. Also have LD, but my nodules are still small and don't bother me, I hope they stay that way. Should they grow, I will go back for RT. That's my plan for now.

I wish you all the best.

Christl

11/10/2011 10:15
Cyclist 
11/10/2011 10:15
Cyclist 

Re: More questions...

Christl
I've read some threads on this forum about effective treatments for cords. Have a look around. At least the cords won't get worse now that you've had RT. Give yourself a bit of time to recover first and then try something to get rid of the cords. Hang in there if your hands feel a bit worse for a while before they get better than you could ever have imagined!

All the best
Di

Christl:
Hello Debrr,
So sorry you are having such a hard time with your feet. Have you had any surgery yet? I am sure there are lots of people out there who had surgery and all went well. I guess before amputation I would consider surgery. I just had RT done on my hands about 2 month ago and I am also wondering about the cords. Seems now my cords, in particular my left hand, which was my good hand, are coming out. I thought RT would take care of them as well, but some people here on this forum say, that RT does nothing for the cords only nodules. I am wondering, just as you, now what? I will go for my second round in December and ask Dr. S about that. I read by someone that her cords also disapeared after RT, so go figure. This is a crazy disease. Seems what works for one, might not work for another.
I don't have an answer, but I am thinking of you and hope you will get some answers to your questions. If I remember correctely, you also had RT done, but not the second round. What about going back for the second round? This disease has been around forever, but there is no real answer for us on what to do. I am more or less new to this, started in June, and decided that RT would be the way to go. Also have LD, but my nodules are still small and don't bother me, I hope they stay that way. Should they grow, I will go back for RT. That's my plan for now.

I wish you all the best.

Christl

11/10/2011 10:21
Cyclist 
11/10/2011 10:21
Cyclist 

Re: More questions...

Hi Debrr
I'm so sorry to hear you are having such a lot of trouble too.

Have you contacted Prof S to get his advice? Maybe you could consider more RT before you try surgery and something extreme like amputation?

I can understand, from my own high levels of discomfort in the past, what would make you consider all the possibilities. You just want to get rid of the things

When I asked Prof S about the cords, he explained that in the feet, they are really just thickenings of the tendon. I asked if this would improve with the RT and he said it's impossible to say, we'll just have to wait and see.

There are still so many unknowns.

Take care
Di


debrr:
Hi everyone, I know I haven't been around for a while....sometimes you just want to forget about having this disease, you know? My feet are acting up again...so back to reality... Hope you know I do think about all of you on here though and hope someone is making progress... I would love to hear about that!!
Can someone explain what RT does to the cords?? I know about what it is suppose to do for nodules and growth. Are you suppose to do another type of treatment for the cords?
I am now wondering if it is better to have feet amputated rather than going for surgery????
Best wishes to all!

11/10/2011 19:56
debrr 
11/10/2011 19:56
debrr 
Re: More questions...

Hi Christl,
Thanks so much for your reply! I was really hurting last night and wondering if surgery just caused more problems maybe amputating was the only answer. I guess I was being pretty dramatic. But I am so tired of all this! I would sure like to hear from anyone who has had successful surgery!
You have a really good memory! Much better than mine! Yes, I did have one round of RT and dr. does want me to have second round. I am hoping to compare before and after CT scans before 2nd round...but yet I do think how my feet are feeling are probably more accurate indicator. What do you think?
Please let me know what Dr. S says about the cords!! I guess I just assumed RT would take care of that. How long has it been since your first RT?
I am thinking perhaps nodules or cords are starting to put pressure on a nerve because it seems like my heels are causing me problems at this point in time. The doc notes say that it has spread into metatarsals on both feet. So there is not much foot left to walk on!
I wish you all the best, Christl and hope your treatment in Dec. yields works amazingly for you!
Debbie


Christ
Hello Debrr,
So sorry you are having such a hard time with your feet. Have you had any surgery yet? I am sure there are lots of people out there who had surgery and all went well. I guess before amputation I would consider surgery. I just had RT done on my hands about 2 month ago and I am also wondering about the cords. Seems now my cords, in particular my left hand, which was my good hand, are coming out. I thought RT would take care of them as well, but some people here on this forum say, that RT does nothing for the cords only nodules. I am wondering, just as you, now what? I will go for my second round in December and ask Dr. S about that. I read by someone that her cords also disapeared after RT, so go figure. This is a crazy disease. Seems what works for one, might not work for another.
I don't have an answer, but I am thinking of you and hope you will get some answers to your questions. If I remember correctely, you also had RT done, but not the second round. What about going back for the second round? This disease has been around forever, but there is no real answer for us on what to do. I am more or less new to this, started in June, and decided that RT would be the way to go. Also have LD, but my nodules are still small and don't bother me, I hope they stay that way. Should they grow, I will go back for RT. That's my plan for now.

I wish you all the best.

Christl
[/quote:

11/10/2011 20:05
debrr 
11/10/2011 20:05
debrr 
Re: More questions...

Hello Di!
Thanks so much for your reply. Good to hear from you again, but would certainly like it to be better circumstances!!!

How are things going for you? It's been a while... Did you get second RT yet? You say a lot of trouble too? Does that mean it is not well for you either?

I guess I was being extreme, but if everyone says to avoid surgery at all costs, what do you do? I know some people have had their pinkies amputated. I am sure hoping for their sake that it solved it once and for all. I just know they told me that there was about 80% chance of recurrence and it would come back with a vengeance!! Pretty scary!

Please let me know how things are going for you!

Debbie

Cyclist:
Hi Debrr
I'm so sorry to hear you are having such a lot of trouble too.

Have you contacted Prof S to get his advice? Maybe you could consider more RT before you try surgery and something extreme like amputation?

I can understand, from my own high levels of discomfort in the past, what would make you consider all the possibilities. You just want to get rid of the things

When I asked Prof S about the cords, he explained that in the feet, they are really just thickenings of the tendon. I asked if this would improve with the RT and he said it's impossible to say, we'll just have to wait and see.

There are still so many unknowns.

Take care
Di


debrr:
Hi everyone, I know I haven't been around for a while....sometimes you just want to forget about having this disease, you know? My feet are acting up again...so back to reality... Hope you know I do think about all of you on here though and hope someone is making progress... I would love to hear about that!!
Can someone explain what RT does to the cords?? I know about what it is suppose to do for nodules and growth. Are you suppose to do another type of treatment for the cords?
I am now wondering if it is better to have feet amputated rather than going for surgery????
Best wishes to all!

11/11/2011 09:27
Cyclist 
11/11/2011 09:27
Cyclist 

Re: More questions...

Hi Debrr
Good to hear from you, although I wish it was under better circumstances too.

I meant I am sorry that you are continuing to have such difficulties 'too', meaning in addition to Christl's comments

As you know, I did have quite a bit of temporary additional discomfort following the RT, which was a slightly scary for a while there, but it has now improved to the point where I can now say that my feet are feeling a bit closer to normal again. There are still ongoing issues and the nodules haven't shrunk all that much, but the symptoms have reduced and the problem has now become less of the focus of my life, which is great!

I'll update my patient experience posting soon and let you know when I do so

All the best
di

debrr:
Hello Di!
Thanks so much for your reply. Good to hear from you again, but would certainly like it to be better circumstances!!!

How are things going for you? It's been a while... Did you get second RT yet? You say a lot of trouble too? Does that mean it is not well for you either?

I guess I was being extreme, but if everyone says to avoid surgery at all costs, what do you do? I know some people have had their pinkies amputated. I am sure hoping for their sake that it solved it once and for all. I just know they told me that there was about 80% chance of recurrence and it would come back with a vengeance!! Pretty scary!

Please let me know how things are going for you!

Debbie

Cyclist:
Hi Debrr
I'm so sorry to hear you are having such a lot of trouble too.

Have you contacted Prof S to get his advice? Maybe you could consider more RT before you try surgery and something extreme like amputation?

I can understand, from my own high levels of discomfort in the past, what would make you consider all the possibilities. You just want to get rid of the things

When I asked Prof S about the cords, he explained that in the feet, they are really just thickenings of the tendon. I asked if this would improve with the RT and he said it's impossible to say, we'll just have to wait and see.

There are still so many unknowns.

Take care
Di


debrr:
Hi everyone, I know I haven't been around for a while....sometimes you just want to forget about having this disease, you know? My feet are acting up again...so back to reality... Hope you know I do think about all of you on here though and hope someone is making progress... I would love to hear about that!!
Can someone explain what RT does to the cords?? I know about what it is suppose to do for nodules and growth. Are you suppose to do another type of treatment for the cords?
I am now wondering if it is better to have feet amputated rather than going for surgery????
Best wishes to all!


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Christl   everyone   circumstances   sometimes   possibilities   consider   questions   someone   nodules   treatment   disease   wondering   surgery   amputated   thickenings   discomfort   correctely   amputation   another   suppose