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Surgeon - Dr Amanda Reilly - Brisbane Australia - Feedback
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12/17/13 17:08
Steven-Australia

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12/17/13 17:08
Steven-Australia

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Surgeon - Dr Amanda Reilly - Brisbane Australia - Feedback

Hi there

Re: Surgeon - Dr Amanda Reilly - Brisbane Australia - Feedback

I have just being diagnosed with Ledderhose Disease. I am 48 years old. I have one nodule in each foot. Details below:
Right foot - 1.5 x 0.6 cm
Left foot - 0.8 x 0.5 cm

I experience burning in the nodules and my soles of my feet burn too.

I have being referred to Dr Amanda Reilly who is an Orthopeadic Surgeon practicing in the Brisbane area of Australia.

I understand, from doing research, that it is critical that the surgeon does it properly or else there is a high chance the nodules grow back.

Therefore...

1) Does anybody have any feedback for Dr Amanda Reilly?

2) Can anybody make any recommendations for a surgeon in Brisbane?

3) Are the nodules in my feet considered small, medium or large?

Many thanks
Kindest regards
Steven

12/17/13 18:01
spanishbuddha 

Administrator

12/17/13 18:01
spanishbuddha 

Administrator

Re: Surgeon - Dr Amanda Reilly - Brisbane Australia - Feedback

Welcome Steven

You've done some research, so hopefully will know that surgery for LD is considered a last resort, after other options such as conservative treatment, RT, Cryosurgery (if available) have failed to relieve debilitating pain or restore function. Even after succcesful surgery, if it is successful, the nodules may come back.

Sorry I can't help with your specific request.

Best wishes
SB

12/22/13 14:07
Steven-Australia

not registered

12/22/13 14:07
Steven-Australia

not registered

Re: Surgeon - Dr Amanda Reilly - Brisbane Australia - Feedback

Hi SB

Many thanks for your reply :)

I am in the unenviable position of not having Private Health Care so have to rely on the Public Health system here in Australia. In addition, am not on a good salary. I am a security guard at the airport, which means I stand all the time during my 9.5 hour shifts I do 4 times a week.

For those who live in my State, know that this State's health system is a lot to be left desired with long lists for surgical procedures.

Having said that, and taking cognisance of surgery being the last resort, have made a note of the only location in Australia that does RT, which is in Adelaide; about a two hour flight from Brisbane. I will be shortly making contact with this facility to obtain the costs and duration of RT. Apart from injections and RT, am not aware there are any other alternatives here in Australia.

In the meantime, I have an appointment to see the above Doctor late January and will be discussing alternatives to surgery with her.

I have also noticed now a small flattish lump in my left thumb part of my inner hand. My left thumb always pains now when I move it. So will need to be referred to a hand specialist.

Apart from the very good support from this forum am very much alone in facing this disease. Having long term depression does not help.

Have a question: will standing for so long speed up growth of my feet lumps? I assume the answer is yes, but would like another opinion.

Kindest regards
Steven

12/22/13 23:33
spanishbuddha 

Administrator

12/22/13 23:33
spanishbuddha 

Administrator

Re: Surgeon - Dr Amanda Reilly - Brisbane Australia - Feedback

Hi Steven

Thanks for the update. Apols if my post was a bit terse or direct, but best to get straight to the point.

Once again I can't help with your questions, I have heard anecdotally doctors suggest DD patients sit on their hand to prevent contraction, as that is so rare with LD. One of the best resources on LD is Gary Manley's blog at http://ledderhose.blogspot.co.uk/if you have not come across it. Gary is an RT success story but has lots of info, links, interviews with doctors other patients and so on. Maybe an answer is there?

SB

01/02/14 02:44
Jaci

not registered

01/02/14 02:44
Jaci

not registered

Re: Surgeon - Dr Amanda Reilly - Brisbane Australia - Feedback

Hi Steven,
I haven't heard of Dr Reilly, but there is a doctor in Brisbane who is quite experienced with alternative treatments for DD and LD. His name is David Chin and he operates out of the Wesley hospital in Brisbane. http://www.davidchin.com.au
He would be definitely worth a shot... I am in Ballarat ViC, and he will be my next port of call when I need treatment, even though it will be a long haul to go and see him.
Hope this helps.

01/06/14 00:41
terrys 
01/06/14 00:41
terrys 
Re: Surgeon - Dr Amanda Reilly - Brisbane Australia - Feedback & Dr Chin

Hi Steven and Jaci,

I recently had both a Fasciotomy operation on my left hand and also my left foot for Ledderhose was injected by Dr Chin some 6 weeks ago. Hand is still recovering, but is looking good, he was going to inject the hand but it was too far gone with the tissue being very fibrous, possibly after 5 NA procedure previously (and hence not a good candidate for an injection) so we decided to strip the finger ready for a future injection if required.

The injection in the foot resulted in TOTAL disappearance of 4 nodules and the larger nodule (around 15-20 mm) has shrunk considerably. It was a bit sore for 2-3 days but I could still walk on it OK. Normally the injection is done with a local anaesthetic, but as I was having a general for my hand, it was done under a general anaesthetic for me. The foot is so much easier to extend straight, walking is easier and to date no side effects. Dr Chin tells me it takes up to 8-10 weeks for the injection to fully do its job, so I am hopeful the larger nodule will shrink further. Dr Chin uses an injection already approved for treating other ailments and has been using this technique for many years with great success. As he is seeking a licensing arrangement for the treatment I feel I cannot disclose too much, but I am certain if you contact Dr Chin he will be more than happy to discuss the efficacy and effect of the treatment. I believe he has an alternative to RT, freezing and other treatments for Ledderhose that once he can get the appropriate licensing in place will become a much sort after treatment. It is also very effective on DD but I can’t comment on this aspect yet as I haven’t had this treatment. In terms of cost, the injection unfortunately isn’t covered by Medicare or I don’t believe any health fund, but compared to out of pocket expenses/gaps for other treatments I think the cost will stack up, especially if you live in Brisbane and surrounds and hence little travel.

09/21/14 05:18
GaryBall 
09/21/14 05:18
GaryBall 
Re: Surgeon - Dr Amanda Reilly - Brisbane Australia - Feedback

terrys:
Hi Steven and Jaci,

I recently had both a Fasciotomy operation on my left hand and also my left foot for Ledderhose was injected by Dr Chin some 6 weeks ago. Hand is still recovering, but is looking good, he was going to inject the hand but it was too far gone with the tissue being very fibrous, possibly after 5 NA procedure previously (and hence not a good candidate for an injection) so we decided to strip the finger ready for a future injection if required.

The injection in the foot resulted in TOTAL disappearance of 4 nodules and the larger nodule (around 15-20 mm) has shrunk considerably. It was a bit sore for 2-3 days but I could still walk on it OK. Normally the injection is done with a local anaesthetic, but as I was having a general for my hand, it was done under a general anaesthetic for me. The foot is so much easier to extend straight, walking is easier and to date no side effects. Dr Chin tells me it takes up to 8-10 weeks for the injection to fully do its job, so I am hopeful the larger nodule will shrink further. Dr Chin uses an injection already approved for treating other ailments and has been using this technique for many years with great success. As he is seeking a licensing arrangement for the treatment I feel I cannot disclose too much, but I am certain if you contact Dr Chin he will be more than happy to discuss the efficacy and effect of the treatment. I believe he has an alternative to RT, freezing and other treatments for Ledderhose that once he can get the appropriate licensing in place will become a much sort after treatment. It is also very effective on DD but I can’t comment on this aspect yet as I haven’t had this treatment. In terms of cost, the injection unfortunately isn’t covered by Medicare or I don’t believe any health fund, but compared to out of pocket expenses/gaps for other treatments I think the cost will stack up, especially if you live in Brisbane and surrounds and hence little travel.

Hi Terry's

Interesting post.....very pleased that this has worked for you.....how are you now??

Gazza

09/22/14 00:58
terrys 
09/22/14 00:58
terrys 
Re: Surgeon - Dr Amanda Reilly - Brisbane Australia - Feedback

Hi Gazza, still all very positive.... here is an extract that I was asked to submit to the uK Ledderhose site:


Pretty sore for two days, walking on the outside of the foot.

The foot settled after 3 days then the nodules started to immediately shrink. Massaging was indicated for helping the TPA work in the nodule.

I was warned the top of the foot would hurt after 3 - 5 weeks, Dr Chin said this is because the foot will flatten and muscles and tendons would be stretched that had been contracted and sure after about 4 weeks that is what happened. The pain lasted about a week and since then has not been a problem.

Some 11 months later there is one very small nodule on the left foot that has been there since the injection (I think this is the one he missed). Cramping has greatly reduced in my left leg! There is no sign of the original nodules so I would call this treatment a success. I will be going to Dr Chin possibly early in 2015 to get my right foot treated.

My experience is a positive one, perhaps I have been lucky but TPA is striking at the very core of the tissue mass and has been utilised for heart attack victims for many years to break up clots. Dr. Chin is attempting to license the treatment to recover the cost of his research to date, I hope he gets a sponsor and makes this treatment more available. Some of the photos he showed me of before and after have been spectacular so I feel it is a worthwhile treatment to pursue.

Regards,

Terry

09/22/14 07:58
GaryBall 
09/22/14 07:58
GaryBall 
Re: Surgeon - Dr Amanda Reilly - Brisbane Australia - Feedback

Thanks for this Terry.....ironically I ve just read your post on the ledderhose site.....it's encouraging that there is no progression......anything you can add......how ore your hands?........have you had any progression anywhere else since undertaking this treatment??

Please keep us in the loop with any news.....hopefully all good....

Many thanks and good luck...

gazza

Edited 09/22/14 08:00

09/22/14 08:14
terrys 
09/22/14 08:14
terrys 
Re: Surgeon - Dr Amanda Reilly - Brisbane Australia - Feedback

Hi Gary,

Some nerve damage on my left hand from the open procedure, Dr Chin worked hard to release my index finger which was at about 45 degrees in the operation but I guess the tissue was affected by the 4 NA releases previously and to quote Dr Chin was a bit of a mess and mass. The hand is beautifully straight after op some 11 months ago but has some weakness in grip.

Right hand is going to be a candidate for release number 3, not too sure if this will be a candidate for the injection by DR Chin as the involvement is in the MCP area or if I can make France I think I'd opt for NA.

Left foot is great following the treatment by Dr Chin with no further progression apart from the small nodule previously mentioned, Right foot has 6 nodules slowly forming a big area of concern. Sigh.... Oh and my Right shoulder which had a frozen episode some 10 years ago has just been diagnosed with "severe to moderate" arthritis (not too sure if this is relevant to DD) ... what fun!

Keep on smiling because there are worse things than this!

Cheers,

Terry

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