Another orthopedic surgeon

Yesterday we saw another surgeon specialising in foot surgery.

This surgeon had a more conservative view. In his opinion we should wait and keep Xinqiao under observation (once a year) until major problems arise (problems walking, pain, shoe problems, etc.). We should also have x-rays done on a regular basis (every 6 ms) in order to understand if the disease progresses and at what speed.

Should problems arise, we will then consider what kind of surgery should be performed.

If we are lucky we can wait until Xinqiao becomes older (say 14) and is able to participate in the informed decision-making process.

He also gave us a suggestion: we should buy hard-soled shoes.

Has anybody idea about the usefulness of this? (I find contrasting views to this regard in the internet).


3 Comments (+add yours?)

  1. natz
    Oct 30, 2011 @ 23:06:07

    Im 33 years old and currently awaiting my second surgical procedure for progressive macrodactyly of my right hand thumb. I was 31 when i was first diagnosed with macrodactyly. Up until the age of 30 my only disconmfort was the looks of other people staring at my hand and making comments about it which i just shrugged off but deep down they really affected me. I started having pins and needles in my hand at night and very sharp pain, which is why i consulted my gp in the first instance. He refered me to have an xray and to have an electronyogramme to check the use of my nerves, at first it was thought that i was suffering from carpel tunnel syndrome. It was only when, under local anesthetic to correct the carpel tunnel that the surgeon realised that the problem was a lot larger than first anticipated. i was given a general anesthetic and he proceeded in debulking as much build up as he could without damaging the median nerve which is where my main problem lies. A year after surgery the pain returned and i started the process all over again, I will have another operation on the 6th of december to remove as much build up again as possible. I only hope that i am making the right decision in going ahead with more surgery,


  2. macrodactyly
    Mar 09, 2012 @ 18:23:19

    dear natz,
    please, tell us, was your surgery successful? Hope you are well.


  3. natz
    Mar 10, 2012 @ 14:06:46

    Hi, well i’m still unanble to work as, i have not recovered full use of my hand after my surgery on the 6th December 2011. I have lost alot of sensitivity in two of my fingers, my thumb and the palm of my hand and once i start to use my hand i eventually loose the feeling all together. My surgeon says it could take upto six months to regain the feeling, if it comes back at all. I collected the surgeons notes from the operation and from what i gather (they are written in french) the surgery was not that succesfull as my median nerve and my thumb nerves are completly invaded by the benign tumours, he adds that the only way of dealing with this would to complety remove the nerve. I would be happy to send anyone photos of my hand to anyone interested,
    Thanks for checking up on how i’m going


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