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My experience with Radiation Therapy for DC and Ledderhose in Minneapolis by Quinnt01
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02/14/2011 20:28
lori 
02/14/2011 20:28
lori 
My experience with Radiation Therapy for DC and Ledderhose in Minneapolis by Quinnt01

I moved your thread for you to DD.


Quinnt01 My experience with Radiation Therapy for DC and Ledderhose in Minneapolis

I’ve had DC in my left hand for about 12 years. It has progressed slowly enough that only now am I considering it beneficial to get NA or Xiaflex (haven’t decided which yet), but it’s too far gone to bother with radiation. However, just a few months ago I noticed two nodules in my right hand and the start of a large nodule in my foot. With NA and Xiaflex making surgery less likely, I’m not as worried about the start of DC in my right hand, but I am very concerned about the ultimate prospect of surgery for Ledderhose in my foot. I decided it was time to pursue radiation therapy (RT).

I asked around and everyone I consulted with, my hand surgeon, doctor friends, and the Mayo Clinic all said not to get RT. None of them knew much about RT for these conditions, and I sensed their advice was based on a bias against any kind of RT. I finally contacted the Radiation Oncology Department at the University of Minnesota Medical Center. I pleaded my case with the intake nurse who said she’d talk to the physicians and get back to me. I received a call a couple days later and was told that they had never done RT for these conditions, but that I could have an appointment with Dr. Kathryn Dusenbery, the Head of the Department.

I met with Dr. Dusenbery, and one of her residents (it’s a teaching hospital). I had brought a lot of information about RT for DC and Ledderhose from this web-site including the list of the locations that currently perform RT. I was fully prepared to plead my case and educate them if necessary, but was I ever in for a surprise. Dr. Dusenbery had come well prepared. She had done research on her own and even had a meeting with other specialists at the University of Minnesota to determine the benefits and risks of RT for my condition. Although she was well versed in DC and Ledderhose, she patiently let me tell her what I knew and let me make my case. She looked over the list of clinics currently doing RT and said she knew a few of the people listed and would call them for more information. She then said she’d do the procedure because the risks were minimal, and according to the papers she had read, there was significant potential benefit. I was very impressed with her.

I went in two weeks ago for the set-up where they figured out the best positions for me, made some molds to hold my hand and foot in place, and marked my hand and foot with a Magic Marker “X” help with alignment during the RT procedure. They also did CAT scans.

Last week I went in once a day for five days to get radiated with X-ray’s and in six weeks I go in for another week. Altogether I’ll be radiated ten times, each time with 3 Grays for a total of 30 Grays. Each procedure last week took no more than 45 seconds and was painless. I had been warned that my skin might get dry and look a little sunburned, but I don’t notice any effect at all. My biggest difficulty was frequently reapplying the “X” on my hand and foot since they wore off so easily. On Friday they asked if I would be willing to get a small tattoo to mark the “X” to make it easier for them during the next round and I agreed.
This has been a very positive experience for me. The office people, nurses, and radiation therapists at the Radiation Oncology Department are outstanding and I’m really impressed with Dr. Dusenbery. She has given me permission to use her name and welcomes any calls for consultations (612-273-6700).

I thought of calling my insurance company for pre-approval, but pre-approvals are not required by my plan and I see no reason why they shouldn’t cover this like any other procedure. I feared that the very act of asking would put them on alert and that whomever I talked with would say “no” as a first response. Dr. Dusenbery said she had seldom had a problem with getting insurance companies to cover procedures she does and she is willing to go to bat for me should it become necessary.
I feel very lucky to be in the Twin Cities were we now have NA, collagenase, and RT treatments available.

- Tom

[Later edit] Whoops! I noticed I put this post into the wrong forum. Maybe the moderator can move the thread?



Edited 01/19/11 03:47

03/04/2011 22:06
quinnt01 
03/04/2011 22:06
quinnt01 
Follow-up to treatment at the University of Minnesota

As a follow-up to this post, I just finished my second and last round of RT for Dupuytren's and Ledderhose. The whole experience with Dr. Dusenbery and the rest at the Radiation Oncology Dept. of the U of Minnesota was outstanding. The treatments were short, painless, and I've had no reaction whatsoever. Not even any dry skin that I notice.

My insurance company, Aetna, seems a little confounded by my case. They've approved about half of the billings and not the others. They are reviewing things now, but I'm optimistic they'll cover the procedure.

03/06/2011 05:14
LubaM. 
03/06/2011 05:14
LubaM. 
Re: My experience with Radiation Therapy for DC and Ledderhose in Minneapolis by Quinnt01

quinnt01:
As a follow-up to this post, I just finished my second and last round of RT for Dupuytren's and Ledderhose. The whole experience with Dr. Dusenbery and the rest at the Radiation Oncology Dept. of the U of Minnesota was outstanding. The treatments were short, painless, and I've had no reaction whatsoever. Not even any dry skin that I notice.

My insurance company, Aetna, seems a little confounded by my case. They've approved about half of the billings and not the others. They are reviewing things now, but I'm optimistic they'll cover the procedure.
Good luck with your long term results for the RT. I had RT in 2009....nodules continued to shrink for months after the treatments were completed...please keep us posted.

Also, let us know if Aetna covers all the treatments in the end. I am starting another post in the hope of compiling a complete list of all the codes from insurance companies that have paid for RT, because some have encountered problems in getting their RT treatments paid.

03/07/2011 15:04
deldan5 
03/07/2011 15:04
deldan5 
Re: My experience with Radiation Therapy for DC and Ledderhose in Minneapolis by Quinnt01

Thanks to your posting, I am the 2nd patient for DD that Dr. Dusenbury is going to treat. I start my treatments today.
I was at the clinic at the same time as you on 3/5 and had hopped to meet you. Just wanted to say thank you for posting the info, without it, I probably wouldn't be moving this quickly with treatment.

03/20/2014 21:48
DaveTS 
03/20/2014 21:48
DaveTS 
Re: My experience with Radiation Therapy for DC and Ledderhose in Minneapolis by Quinnt01

Going for RT with Dr. Dusenbery at the end of March. Thanks for making this info available. She and her staff have been great to deal with so far. I have had surgery and that just made the DC angrier (more nodules formed....). I will post a review after the initial and 12 wk treatments.

03/22/2014 03:42
cschieber 
03/22/2014 03:42
cschieber 
Re: My experience with Radiation Therapy for DC and Ledderhose in Minneapolis by Quinnt01

I don't know about other insurance providers, but Aetna has a surprisingly progressive view on Dupuytrens treatment. They have a great summary of the disease and it's treatments on their website and they paid for the radiation I received in Virginia and the treatment I had in Germany (not including the airfare and flight lol).

http://www.aetna.com/cpb/medical/data/800_899/0800.html

03/27/2014 05:06
hmeade 
03/27/2014 05:06
hmeade 
Re: My experience with Radiation Therapy for DC and Ledderhose in Minneapolis by Quinnt01

Three surgeries to my hands in the past six years and the surgeon said he would not do any more surgeries due to the aggressive nature of my dupuytren's and re-occurrence. I had RT six months ago and all the nodules have shrunk significantly and do not appear to be coming back. I had nodules on my palms and fingers and am extremely pleased with the RT procedure and results. I live in Des Moines Iowa if anyone wants the name of the RT doctor.

Edited 03/27/14 07:08

03/28/2014 19:38
DaveTS 
03/28/2014 19:38
DaveTS 
RT in Minneapolis

Hi all:
Met Dr. Dusenbery and her team today. I'm going to have RT done on both my left and right hand starting next Monday. She was very nice and courteous and spend all the time with me that I needed. The rest of her team is very competent as well.
It seems like my experience in her office was similar to what people are seeing in Hamburg. I will be posting more detailed progress reports through my therapy next week.
For those interested I am staying in a town outside of Minneapolis on the Wisconsin side called Hudson. Cute town and 30 min drive to UM. For those looking for the city experience there is a nice hotel located two blocks away from the clinic. It is called the commons. Went in this morning and it looks really nice.
When I come back in 8 weeks for my follow-up treatment, that is where I will probably stay.
If Anybody's looking for any more details or has any questions whatsoever, please feel free to PM me.
Dave

03/28/2014 21:53
Jeanie 
03/28/2014 21:53
Jeanie 
Re: My experience with Radiation Therapy for DC and Ledderhose in Minneapolis by Quinnt01

Best wishes to you David! Hudson is a nice little town. I'm looking forward to reading about your treatment.

Edited 03/28/14 23:55

04/01/2014 16:04
handal 
04/01/2014 16:04
handal 
Re: My experience with Radiation Therapy for DC and Ledderhose in Minneapolis by Quinnt01

lori:
I feel very lucky to be in the Twin Cities were we now have NA, collagenase, and RT treatments available.

Hi, I live in the Twin Cities as well and am very interested in hearing how your RT went. I am considering this as well.

What is "NA"? I know what RT and collagenase is, but not NA.

thanks

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collagenase   Therapy   insurance   treatment   outstanding   Cambidgeshire   experience   information   significantly   pre-approvals   treatments   Ledderhose   procedure   Minnesota   considering   Dusenbery   Minneapolis   Radiation   re-occurrence   Quinnt01