| Lost password
362 users onlineYou are not loggend in.  Login
Recently diagnosed and looking for advice. (N CA Bay Area)
 1 2 3 4
 1 2 3 4
01/11/2014 02:25
Tamarakruse 
01/11/2014 02:25
Tamarakruse 
Re: Recently diagnosed and looking for advice. (N CA Bay Area)

Thanks for the updates, I seem to be in the same condition as you, but was mostly concerned about the nodules growing and limiting my walking more, so I did radiation last month, first round, in San Diego. I so far have seen no improvement and was not impressed with the doctor. He thought my nodules had shrunk but was still planning the radiation. I told him
I didn't think that was appropriate timing so we decided, I decided, to just do the one foot that was actively hurting most. And so far, no help.

Again, I would consider Prof S in Germany but with no knowledge or way of knowing, if I am a candidate, this is a hard trip
To plan. How many times?? What information did you send him and who did you talk
To? Any specifics, I would appreciate. But I would caution against RT with perhaps anyone else? Is it possible only one person really knows the timing intuitively??

Tamara

01/11/2014 17:33
pricklerII 
01/11/2014 17:33
pricklerII 
Re: Recently diagnosed and looking for advice. (N CA Bay Area)

Tamarakruse:

Again, I would consider Prof S in Germany but with no knowledge or way of knowing, if I am a candidate, this is a hard trip
To plan. How many times?? What information did you send him and who did you talk
To? Any specifics, I would appreciate. But I would caution against RT with perhaps anyone else? Is it possible only one person really knows the timing intuitively??

Tamara

I emailed Dr Seegenschmiedt at mhs@szhh.info. I sent him pictures of my hand and foot with an outline in marker of what I perceived to be the extent of the nodules and cords. I explained my story much the way I presented it in this thread. He replied that I may be a good candidate for prophylactic RT as he put it, but stated that an in person palpatory assessment was necessary for the final determination. That is where I was stuck, because a trip from the United States to Germany for an in person consultation isn't as easy as jumping on a plane for me.

We exchanged several emails and went as far as going over potential appointment times. In my last email I made it clear that arranging such a trip was going to take time for me with my obligations for family, work, fiances, etc. and that I'd let him know when and if I could make the trip to Hamburg.

All emails I sent were replied to within hours regardless of the time of day, which makes me wonder if it wasn't someone who works for his office with whom I was corresponding with. I have to imagine he's a very busy person. For me this is all just the process of gathering information, getting opinions, and exploring my options. I'm still in the early phase with my foot and middle phase with my hand so I'm trying to be proactive.

I would suggest sending him an email. He's very responsive and will provide lots of information for you. Hope the RT helps with your foot. I'm hoping for all of us that RT becomes a more viable option all around the world as doctors get more experience treating the disease.

01/11/2014 23:02
Christl 
01/11/2014 23:02
Christl 

Re: Recently diagnosed and looking for advice. (N CA Bay Area)

Prof. Seegenschmiedt's protocol is RT two times, 3 month interval. I noticed in particular with my hands, that the 2nd round reduced and even eliminated nodules. I still have the same nodules in my feet, but the pain is somewhat gone. I do know I have feet when I walk, but nothing like before RT, actually even after RT the pain was pretty intense, but then just gradually my situation improved. I also know, wearing the right shoes is very important. No more $ 19,95 shoes, more like $ 195,50.
I went to Germany 4 times, two times for my hands and two times for my feet. Of course I also looked at it as a vacation, more so for me, since I am from Germany. Hamburg is a fantastic town and by the way, Prof. S will answer all his mail himself, nobody does it for him. He is very responsive, I met him here in the States. Emailed him, he immediately replied and I met him the next day for a consultation. Lucky me, my husband thought I must have flipped my lid for wanting to go to Germany for RT. Matter of fact he had to do his right hand as well, go figure. He injured his hand opening a marmalade jar and DD developed in that hand.


Christl

01/14/2014 15:42
nanshands 
01/14/2014 15:42
nanshands 
Re: Recently diagnosed and looking for advice. (N CA Bay Area)

Hello Prickler,

I've been out of commission for a couple of weeks dealing with the flu, turned bronchial infection. Just now reading your various posts and situation.

I would like to weigh in on a few things. One, try to relax through this process of determining what to do and when to do it. It sounds as if you are in the early stages of Ledderhose, and there is time to make informed decisions. I felt a lot like you this last year, panicky at times wanting answers, but mostly just wanting to have the pain go away.

Secondly, feel confident no matter what it costs in whatever doctor you choose. After going to two different oncologists that treat LD and DD with RT in the States, I elected to go to Germany. I'm glad I went. That does not mean I heard everything I wanted to hear or was treated with RT as I thought I would be. It does mean that I gained a confidence and greater understanding about this disease and how to treat it unlike anything I heard here in the States. Make sure that what you hear is not just, "Yes, you have this and this is how we treat it." But rather a doctor that explains how the disease progresses, and the importance of doing RT in the active stages of the disease. A qualified oncologist knows when the disease is active, when to treat and how much area to treat.

With that being said, keep in mind LD is a very difficult disease to treat. You do not read as many success stories on this Forum regarding RT and LD as you do with RT and DD. I personally feel that makes it even more important that you choose the right doctor for proper evaluation and treatment.

Finally, though you more than likely do not need to rush into treatment, do not wait for getting a really good evaluation done by a qualified oncologist. Every doctor needs a baseline to start from. Getting the MRI was smart. That helps establish your baseline. Also, every doctor needs to see you personally. No one can adequately diagnosis you via email and photos. Proper diagnosing comes from experience and feeling your feet.

One more thing. Prof. S receives about 40 or more emails a day. He told me that he cannot allow even one day to pass without responding or he cannot keep up. Though not perfect, he is one of the most committed, dedicated doctors I have ever met. And I've met A LOT of doctors in my life!

Hope this helps!

Nan

01/17/2014 02:18
pricklerII 
01/17/2014 02:18
pricklerII 
Re: Recently diagnosed and looking for advice. (N CA Bay Area)

Christl:

Lucky me, my husband thought I must have flipped my lid for wanting to go to Germany for RT.


Christl

This basically describes my whole family, but I don't blame them. I however have done the investigating and research. They are just going on preconceived notions. I'd probably feel the same way if I was in their position.

So how long did you have LD symptoms before RT? How long ago did you have the RT done on your feet? I really appreciate your feedback. Learning from other peoples experiences is really helping me gauge my course of action.

01/17/2014 02:44
pricklerII 
01/17/2014 02:44
pricklerII 
Re: Recently diagnosed and looking for advice. (N CA Bay Area)

nanshands:


Finally, though you more than likely do not need to rush into treatment, do not wait for getting a really good evaluation done by a qualified oncologist. Every doctor needs a baseline to start from. Getting the MRI was smart. That helps establish your baseline. Also, every doctor needs to see you personally. No one can adequately diagnosis you via email and photos. Proper diagnosing comes from experience and feeling your feet.

Nan


At this point, Dr Seegenshmeidt would be my top choice for treatment. It may well just happen to be that going to Germany is the least expensive choice as well. My health is more important than money, but this is a terrible time for me to take on any more financial burden.

Being that I am only 2 months into symptomatic LD discovery and discomfort I've decided to be proactive in treatment, yet take time to observe my symptoms. I've gotten over some initial anxiety and am learning how to deal with the discomfort. For now I'll monitor it's size by taking monthly pictures. Regularly palpate and note tenderness and characteristics . See what activities or circumstances make the pain better or worse. If things don't improve within the next several months I may have no choice but to take action. My foot pain is really taking a toll on me and interfering with my overall quality of life.

01/17/2014 23:15
Christl 
01/17/2014 23:15
Christl 

Re: Recently diagnosed and looking for advice. (N CA Bay Area)

I had last RT done December 2012 for both feet. I decided to go and have RT done when walking was painful. I had such a great success with my hands so I thougt it would be the same with my feet. I had RT 9 month after they started to hurt when walking or standing. Even at rest they were burning and just had a strange sensation. This disease just totally freaked me out. I would say RT worked better on my hands. I still know at all times I have feet, they are better thought than prior to RT. I can walk, I am happy about that.






Christl

01/18/2014 00:11
Christl 
01/18/2014 00:11
Christl 

Re: Recently diagnosed and looking for advice. (N CA Bay Area)

My RT was done in Germany with Prof. Seegenschmiedt for hands and feet.

01/18/2014 01:43
Tamarakruse 
01/18/2014 01:43
Tamarakruse 
Re: Recently diagnosed and looking for advice. (N CA Bay Area)

Those seeing Dr S, what was the length of time between rounds? I am thinking at this point I won't be going back to Dr T in San Diego for my second round. he is saying 4-5 weeks out for next round. And what length of time passed before you felt some improvement in your feet, if you did?

Tamara

01/18/2014 04:14
nanshands 
01/18/2014 04:14
nanshands 
Re: Recently diagnosed and looking for advice. (N CA Bay Area)

Tamara,

The minimum time between treatments is 12 weeks. The maximum time he recommends is no longer than 4 to 4 1/2 months. Since going beyond the 4 to 4 1/2 months is just not done there aren't any studies or stats to indicate if the RT would be as effective or not. Prof. S holds a strong opinion that the minimum time between treatments should be 12 weeks.

I did not have RT on my feet as yet so cannot speak to that.

Nan

Edited 01/18/14 06:15

 1 2 3 4
 1 2 3 4
research   podiatrist   walking   treatment   Seegenschmiedt   fibroma   information   Recently   consultation   discomfort   experience   injection   looking   diagnosed   disease   nodules   Germany   plantar   dupuytren-online   Cortisone