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Ledderhose
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07/20/2012 15:47
Elin 
07/20/2012 15:47
Elin 
Ledderhose

I am new on the forum. I had a consultation with Dr. Tripuraneni in La Jolla, California on Wednesday. He is doing RT on me in September. Hope everything goes well....I will let everyone know about the treatment and hopefully good results.

07/20/2012 15:49
Elin 
07/20/2012 15:49
Elin 
Re: Ledderhose

Elin:
I am new on the forum. I had a consultation with Dr. Tripuraneni in La Jolla, California on Wednesday. He is doing RT on me in September. Hope everything goes well....I will let everyone know about the treatment and hopefully good results.

07/20/2012 16:08
Gary1987 
07/20/2012 16:08
Gary1987 
Re: Ledderhose

Wishing you the best of luck with your treatment. I think RT is working for me and fingers crossed it does for you.

Gary

07/20/2012 18:18
spanishbuddha 

Administrator

07/20/2012 18:18
spanishbuddha 

Administrator

Re: Ledderhose

Elin:
I am new on the forum. I had a consultation with Dr. Tripuraneni in La Jolla, California on Wednesday. He is doing RT on me in September. Hope everything goes well....I will let everyone know about the treatment and hopefully good results.
Welcome to the forum Elin.

Thanks for sharing now and in the future.

If you browse around the forum for others who have had RT for Ledderhose you will see nearly everyone, maybe everyone, has been please with the eventual outcome. Eventual, because it's not really a quick fix.

Best wishes for your treatment and we look forward to hearing about it.

07/23/2012 20:50
Christl 
07/23/2012 20:50
Christl 

Re: Ledderhose

Elin, I will also have RT done on both feet in September, treatment will be in Germany.
How long have you had LD? What are your symptoms?


Good Luck.

Christl

07/24/2012 14:31
Elin 
07/24/2012 14:31
Elin 
Re: Ledderhose

Hi Christl

Thanks for replying. I have had Ledderhose for about 8 years. Very small nodules on left foot then later small nodules on right foot. They have never really given me too much pain unless I really exercise a lot, but in the last year the nodules on my left foot have gotten much larger. The orthopedic surgeon wasn't much help just told me he could do surgery but a good chance the nodules would come back and more aggressive. Really scary!

I finally found out about Dr. T. in California. I had a consultation last week and he was very nice and his nurse. He works at Scripps Hospital in La Jolla, Ca which is an excellent hospital and research center. it's only about 1 1/2 hours away from where I live. I was so fortunate to find his name on the forum. He was Chief of Staff for several years and now is Head of Radiation Oncology.

He has been treating patients with Dupuytrens and Ledderhose for about 6 years. I know in Germany they have been doing this much longer but the U.S. is very slow in getting things approved by the FDA. Now we can compare notes on our treatment and hopefully everything will turn out great! Dr. T seemed very encouraging and I'm looking forward to getting this over!

07/24/2012 14:57
flojo 
07/24/2012 14:57
flojo 
Re: Ledderhose

I had RT done for Dupuytren's on my right hand by Dr. Tripuraneni 3 years ago. He knows what he is doing.

RT was successful for me. No new nodules have formed in the radiated area. RT isn't effective on cords, but the existing cords have been under control. I did have NA done a year ago and wear a night hand splint.

I feel confident in Dr. T. I believe RT will be successful. Luba had him for RT on Ledderhose in her foot and Dupuytren's in her hand, with great success. You may find her posts about it on this Forum.

Good luck! Look forward to your updates over the next year as the treatment takes effect.

07/24/2012 15:08
Elin 
07/24/2012 15:08
Elin 
Re: Ledderhose

it's great to hear you had success. Did your nodules shrink at all? I have them in both of my feet and not too much pain but definitely hoping that they will get smaller. Also, did your insurance cover the procedures? This stuff is definitely scary but having support from other people really helps! Thanks

07/24/2012 15:45
flojo 
07/24/2012 15:45
flojo 
Re: Ledderhose

What insurance do you have? My secondary is Anthem Blue Cross. They would have covered it all if they had been primary, but since Medicare is my primary, BC only pays for treatments that Medicare approves.

Medicare did cover the actual radiation therapy, the big ticket item for me. Scripps insurance department dropped the ball in my case and did not appeal the denial of charges for Dr. Tripurineni, so my cost was about $1200. The actual radiation was in the many thousands and that was paid for.

I am getting RT in August on my left hand, but this time I am going to Dr. Katerelos at Loma Linda UMC. It's closer, but primarily it is because of the Scripps insurance dept. Dr. Tripurineni is good. I have the utmost confident in him, but find Dr. Katerelos equally knowledgeable. He, too, knows radiation therapy for many diseases and is passionate about helping us Dupuytren's and Ledderhose victims, oh, I mean, patients.

I sent you a private message. Look at the options to the right of You are logged in as _______ and if you see a number by Private Messages, you have a new message. Depending upon which direction you live from Scripps, we may live close to each other.

07/25/2012 03:13
Elin 
07/25/2012 03:13
Elin 
Re: Ledderhose

I checked but I didn't find a private message in my box. Maybe you could try sending it again. I have Blue Shield and it is my primary insurance, so hopefully it will pay for my whole procedure since I will be staying at a nearby hotel for my treatments.

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