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New Zealander with Ledderhole in my left foot.
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02/01/21 00:27
TessP 
02/01/21 00:27
TessP 
New Zealander with Ledderhole in my left foot.

Hi everyone,
I'm new here and am reaching out to get some much needed help. My story started 5years ago with garrod nodes on my fingers that were mis diagnosed by the doctor I was seeing.
These nodes would be red and sore at times.
I then noticed a lump in my left foot 2 years ago. Went to the doctor again saying I felt it was all connected.
My doctor at the time sent me to get a scan to find out what it may be. The scan had said yes fibromatosis.
My doctor at the time thought it to be a cyst, which I felt was not and then decided to try find a doctor with muscular skeletal background so I could get a proper diagnosis. I spent massive amounts of time to investingate pre cursors to this disease. I found an amazing doctor who sent a referral to the Hospital Muscular Skeletal Department. I've waited 6months and am due for my first visit this Thursday.
I'm in and out of Aand E as if I do anything exercise I end up there in sciatic pain.
I have been told that ibrophen is the only pain relief and the pain has been getting worse and I've discovered a second bump.
It's painful to walk and stand. Impossible to wear shoes.
My scan had stated it was 2.5 long and 3.5com deep, it's been 8months since the scan and I'm struggling to get help. My doctor doesn't want to do much until I see the specialist but I'm scared for my future as I lost my job to covid 19 and feel depressed now due to pain 24/7.
Any advice where to turn to in NZ would be so greatly appreciated.
I'm a female at 47 years old in Christchurch New Zealand.

Thanks

02/01/21 09:05
spanishbuddha 

Administrator

02/01/21 09:05
spanishbuddha 

Administrator

Re: New Zealander with Ledderhole in my left foot.

Hi Tess,

there are only a few non-surgical options for LD, https://www.dupuytren-online.info/ledderhose_therapies.html and surgery is really left as a last resort. Your best option in NZ is probably RT, see https://www.dupuytren-online.info/radiotherapy_clinics.html or https://dupuytrens.club/radiation-oncologist-list

As well as browsing through the forum, one of the best resources for all discussions on LD treatments is probably Garys blog http://ledderhose.blogspot.com/ he went from someone barely able to walk to running marathons, and has interviewed Drs providing a wide range of alternative treatments.

Best wishes

02/01/21 09:46
TessP 
02/01/21 09:46
TessP 
Re: New Zealander with Ledderhole in my left foot.

Thank you so much for the help. I visit the specialist on Thursday this week and will definitely be discussing RT.

02/01/21 16:01
floridagal 
02/01/21 16:01
floridagal 
Re: New Zealander with Ledderhole in my left foot.

Here are two Facebook Groups that you might find helpful

https://www.facebook.com/groups/1652149925085536

https://www.facebook.com/groups/BritishDupuytrensSociety

02/01/21 20:52
TessP 
02/01/21 20:52
TessP 
Re: New Zealander with Ledderhole in my left foot.

Thank you kindly unfortunately I don't have FB but will def try and find support groups in New Zealand. Information from all over the globe is helpful as it makes knowing more about the progression in this disease important. I'm not sure how bad mine will get but it's frustrating being in pain every day. I am holistic and having to take pharmaceutical medicines really does not bode well but I have little choice with no money for alternative treatments.

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