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Just got home from Scripps in CA
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01/08/2011 06:09
debrr 
01/08/2011 06:09
debrr 
Just got home from Scripps in CA

I just got home from CA and an appt. with Dr. Tripuraneni for an evaluation of ledderhose nodules in both feet. I thought I would share my thoughts on my experience and ask for guidance on what I should post on my upcoming radiation therapy.
Dr. Tripuraneni reiterated what I had been told before--- I have the worst Ledderhose nodules he has ever seen. I will take photos of both feet if anyone is interesting in seeing them. They are nicely outlined by Dr. T right now.
Thanks to this forum, I decided after many years of praying they would just go away, to seek an alternative opinion, other than the disheartening comments by orthopedic surgeons. (BTW, I have tried Verapamil, and niacin with no success.)
I had considered going to Germany but decided it was closer and more comfortable for me to get a first opinion closer to home.
First impression of Scripps was that it was very busy place, but all the staff was very friendly and helpful. I thought Dr. T was a charming man, with a nice smile, and good sense of humor which put me at some ease. I consider myself "doctor phobic", so for me to feel anything but sheer horror from a doctor is saying a lot.
He told me 2 out of 3 of his patients experience a reduction of size and therefore of pain. I am in considerable pain right now. (i.e; difficulty walking, wearing shoes) He recommended 2 sets of 5 consecutive days of RT as soon as Jan. 17th. ( I am not sure tonight exactly what date I will be going) Then one month off to see if there is any improvement, and then possibly another round.
This forum has led me to my first ray of hope in this disease so when I go for treatment, I would like to keep anyone interested, informed of my experiences and subjective opinions. I would appreciate any input on what you would like to hear/see. I would also greatly appreciate any thoughts/advise anyone that has gone through this experience has to offer, especially if it is with Dr. T.
Thanks to all who share and make this forum possible!

01/08/2011 10:35
jocond 
01/08/2011 10:35
jocond 
Re: Just got home from Scripps in CA

I think it would be great to see some pictures. Always nice to have some sort of comparison.

01/08/2011 17:52
Larry 
01/08/2011 17:52
Larry 
Re: Just got home from Scripps in CA

Please keep us updated on radiation treatment concept, costs and treatment outcome.

Germany is not a bad address to get a first assessment especially in difficult cases like yours.

Good success, Larry

01/09/2011 05:03
debrr 
01/09/2011 05:03
debrr 
Photos

Left foot....Bottom....Sure wouldn't want to post these on match.com.

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01/09/2011 05:19
debrr 
01/09/2011 05:19
debrr 
Photos

Right Foot, Bottom View

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01/09/2011 05:21
debrr 
01/09/2011 05:21
debrr 
Photos

Right Foot, Profile

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01/09/2011 05:25
debrr 
01/09/2011 05:25
debrr 
Photos

Left Foot, Profile

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01/09/2011 05:28
LubaM. 
01/09/2011 05:28
LubaM. 
Re: Just got home from Scripps in CA

debrr:
Left foot....Bottom....Sure wouldn't want to post these on match.com.
Debrr...

Looking at the picture its hard to tell how many nodules you have and what size they are.

I had RT with Dr. Tripuraneni in Nov. 2009. I have two nodules on the bottom of my left foot. Before RT, they were the size of large marbles, were growing, and were very hard. My foot was constantly itching and burning. Fortunately it was not painful to walk on, because my nodules were in the middle of the foot, in the arch, and closer to the heel.... I also have a high arch....it seems yours are closer to the toes and, therefore, would interfere with walking.

I had the RT. for 5 days a week, 2 week in a row for a total of 10 treatments. I found Dr. T. and all his staff to be knowledgeable, warm and efficient. Fourteen months after treatments, I feel the disease has stopped progressing, there is no more itching and burning and the nodules are much, much smaller and softer. I had no side effects whatsoever from the radiation.

I totally recommend Dr. T. and encourage you to try RT to stop the progression of the Ledderhose.

We stayed at a hotel in DelMar (4 miles away from Scripps) and got a good discount for medical treatments at Scripps. Let me know if you need information.

01/09/2011 05:40
debrr 
01/09/2011 05:40
debrr 
Re: Just got home from Scripps in CA

LubaM.,
Sorry if the pictures don't show the detail I wish it had. I don't know how many nodules I have. Would the MRI tell? Dr. T did not tell me.
My nodules are visible in the arches of both feet. However I can feel pain in the area beneath my toes now as well, esp. with walking.
I would really appreciate any information on the hotel in DelMar because I am still researching where to stay for this.
Thanks so much for your post, because I am even more encouraged that you have had good results thus far. Please keep us informed!

Looking at the picture its hard to tell how many nodules you have and what size they are.

I had RT with Dr. Tripuraneni in Nov. 2009. I have two nodules on the bottom of my left foot. Before RT, they were the size of large marbles, were growing, and were very hard. My foot was constantly itching and burning. Fortunately it was not painful to walk on, because my nodules were in the middle of the foot, in the arch, and closer to the heel.... I also have a high arch....it seems yours are closer to the toes and, therefore, would interfere with walking.

I had the RT. for 5 days a week, 2 week in a row for a total of 10 treatments. I found Dr. T. and all his staff to be knowledgeable, warm and efficient. Fourteen months after treatments, I feel the disease has stopped progressing, there is no more itching and burning and the nodules are much, much smaller and softer. I had no side effects whatsoever from the radiation.

I totally recommend Dr. T. and encourage you to try RT to stop the progression of the Ledderhose.

We stayed at a hotel in DelMar (4 miles away from Scripps) and got a good discount for medical treatments at Scripps. Let me know if you need information.

01/09/2011 05:53
LubaM. 
01/09/2011 05:53
LubaM. 
Re: Just got home from Scripps in CA

Debrr....

We stayed at the Clarion Inn Del Mar

http://www.delmarinn.com/

They gave us a big discount. Just mention your treatments at Scripps when you reserve. I think in Nov. 09 we payed around $69 for a room with a kitchinette. Its only 4 miles down the road from Scripps, includes breakfast. The hotel is facing the ocean, and Del Mar and LaJolla are beautiful cities. San Diego is not too far.

The truth is that even though this is a "weird" and "annoying" disease, we made the RT treatment into a wonderful two week vacation in a beautiful place....can't complain.

Good luck with whatever you decide.

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