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Newby from Down Under
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07/04/17 13:44
Breakaway65 
07/04/17 13:44
Breakaway65 
Newby from Down Under

Hi folks

I've been lurking for quite some time and time to introduce myself.

I am a 55 yr old male engineer, living in Western Sydney, Australia.
Physically active, busy at work and home, married with 2 adult kids, (29 and 27).

I started getting LD around 30 years ago.
Since then I have had 4 operations on my hands (2 on each hand), 2 by hopeless hand local specialist and 2 by an excellent hand surgeon at Royal North Shore Hospital.
DC at this stage is under control.
During this time (between op 3 & 4) I was 1 of the original guinea pigs for the Collagenase injection trials at Royal North shore. The node they injected worked well, however, the rest of the nodes were too many or too large to treat, so op 4 happened. Skin grafts to both hands.

LD appeared in my left foot probably about 10 yrs ago and my right foot 5 years ago.
My left foot feels like I am standing on golf balls and the right foot is starting to get painful as well.
While this does not effect my daily routine I need to start doing something about it. It is effecting the way I walk now and my back is getting painful.

Local doctors (GP) around here know very little about DC and even less about LD.
My local GP referred me to a "good" podiatrist, the podiatrist had no idea what he was looking at, I educated him about what I know about it and he still billed me $165.00. Come back in 2 weeks and I will do some research into it, you have to be joking.

Based on the information thru the forum I am now looking at RT treatment for my feet and have an appointment at the Marta hospital latter this month to meet with 1 of the professors there.

Hopefully we will be able to move forward.

Cheers, John

07/04/17 14:20
wach 

Administrator

07/04/17 14:20
wach 

Administrator

Re: Newby from Down Under

Hi John, welcome to the forum!

An additional option down under might be the treatment that Dr. Chin in Brisbane is offering http://www.dupuytren-online.info/Forum_E...1998&page=1 . I am not sure how good it works for LD and I don't know what he is charging and how often you need o see him. I just wanted to mention it because it seems to be specific to Australia. Dr. Chin never disclosed anything about his treatment and I haven't seen anyone else doing it.

BTW, a good source of information, besides this web site http://www.dupuytren-online.info/ledderhose_therapies.html, is also the Ledderhose disease blog of Gary Manley http://ledderhose.blogspot.de/ .

Wolfgang

Edited 07/04/17 14:22

07/05/17 00:01
spanishbuddha 

Administrator

07/05/17 00:01
spanishbuddha 

Administrator

Re: Newby from Down Under

Welcome from me too.

Interesting to hear that your DD is under control despite two poor surgeries, and now with skin grafts. That's encouraging since we hear about so many bad outcomes with surgery.

RT is probably the way to go with your LD in your feet since it sounds like the fibromas are growing, it usually makes a difference with pain, and often people report a reduction in the size of the fibromas. You may need to be patient though following treatment, and stick with orthotics to keep a balanced gait.

Please do come back and let us know how things turn out.

Best wishes SB

07/05/17 10:54
Breakaway65 
07/05/17 10:54
Breakaway65 
Re: Newby from Down Under

Thanks for the replies guys.

Wach, I looked into the Ledderhose disease blog of Gary Manley, it has some interesting information.
I have read about some of Dr Chin’s work in Brisbane and I will consider it if the guys at the Marta hospital can not help with the RT.

Spanishbudda, yes, I am happy with the LD results, however, I work with my hands and unfortunately the skin grafts are where you use spanners so I need to think about really getting into it and the skin grafts are easily torn and hate harsh chemicals like degreasers. That is the only couple of downside issues.
The LD nodes are growing that is for sure.
Hoping the RT will not only stop the pain but also reduce the nodes. I reckon after the procedure I will need to return to the podiatrist and get some inner soles made up.
On bad days now I have some inner soles which I modified by cutting out the arch pad to allow the nodes to “swing free”. The killer with the LD is I have to wear heavy work boots 10 -12 hrs a day. When I get out these off it is bare foot / thongs/ ugg boots, depending on the season (ugg boots now).

After I visit the Marta hospital I will post some results.

Cheers, John

07/13/17 11:13
Breakaway65 
07/13/17 11:13
Breakaway65 
Re: Newby from Down Under

Just an update.

Saw the Professor Micheal Izard at the Matar hospital in Sydney today.
He reckons we have a good chance with the RT.
Went to the Macquarie Hospital after that for CAT scans.
Treatment will start on the 24th July.
5 days of RT, 6 week break, 5 days of RT again.
Fingers crossed, hope to jag a winner with this.
After bargaining, out of pocket Au$1000.00.

Cheers, John

07/24/17 11:00
Breakaway65 
07/24/17 11:00
Breakaway65 
Re: Newby from Down Under

First day of radio therapy, no dramas so far, 4 more hits this week.

07/24/17 13:29
spanishbuddha 

Administrator

07/24/17 13:29
spanishbuddha 

Administrator

Re: Newby from Down Under

Breakaway65:
First day of radio therapy, no dramas so far, 4 more hits this week.
On your feet/foot? Some people get a short term inflammatory response, nothing to worry about if you do, I hope your radiologist lets you know what to expect. Apart from a suntan and dry skin my hands were fine, and no progression since apart from self induced trauma.

07/25/17 10:46
Breakaway65 
07/25/17 10:46
Breakaway65 
Re: Newby from Down Under

2nd day treatment.
Woke up this morning and head off to work.
Both feet are sore, (same amount of sore as I was experiencing at the end of the day).
The nodes actually look bigger!!!
GRRRRR
Hope it is an illusion.
Lets see what happens tomorrow.

07/25/17 13:03
spanishbuddha 

Administrator

07/25/17 13:03
spanishbuddha 

Administrator

Re: Newby from Down Under

Be prepared to be patient. After I had RT on one of my hands it took 18 months before I became convinced it had helped.

07/26/17 11:21
Breakaway65 
07/26/17 11:21
Breakaway65 
Re: Newby from Down Under

3rd hit today, all good.
Pain is the same as yesterday.
I think the nodes are unhappy, great, just go away!

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