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Getting fed up, any advice welcome
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11/18/21 19:33
GaryCr 
11/18/21 19:33
GaryCr 
Getting fed up, any advice welcome

Hi

I am 30 years old, having had Ledderhose disease since my teens.

Just looking for some motivation or advice. I've shared my story before in previous posts. I'm really fed up with my Ledderhose disease which can be seen in the attached pictures. My mri last year showed extra bone growth, bone spurs, degenerating bone, ankles are worn too.

I have dupuytrens in my left hand which can be seen in attached picture also. No fingers retracting yet

I have a bulging disc in my back pressing on my cauda equina.

I live in Northern Ireland and through NHS so far for my Ledderhose I have had physiotherapy treatment various times and been discharged each time as the physiotherapists don't know what they could do for me. I have had insoles moulded on various occasions which I feel have made the pain in my feet worse especially now that when walking my heels feel like they have been hit by a hammer due to the degenerating bone. I am awaiting an appointment with oncologist in regards to radiotherapy treatment to see if it helps the nodules but nothing will help the other issues I now have with my feet that I feel I wouldn't have had if the Ledderhose was sorted out sooner. Regarding both Ledderhose and bulging disc, my consultants keep ruling out surgery and as there are no other specialists here in NI I am at a loose end.

I am a student nurse, started my 2nd year of my degree and also a healthcare assistant. I have put my degree on hold for a few months in the hopes that my new physio appointments will work miracles which I highly doubt.

I'm considering giving up my dream career over this all. I have very little income at present due to being a student and now having to take time out of university and am struggling working 1 shift a week so private healthcare isn't affordable for me

Again, any motivation or advice is greatly appreciated

Kind regards

Gary

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11/18/21 20:32
spanishbuddha 

Administrator

11/18/21 20:32
spanishbuddha 

Administrator

Re: Getting fed up, any advice welcome

Hi again Gary

Sorry to hear this update from you, where there has not been any improvements in your conditions.

Taking one thing at a time, I know back pain or trouble can be miserable, and would have thought that at least the NHS can help you there? I don't know the situation in NI but in England getting referrals for some higher priority, including painful conditions, is still possible amongst the Covid induced backlog.

I'm not sure about the DD in your hand, the photo is not helpful, is it stable, sore, progressing? I would think getting RT on the NHS might be difficult at the moment if available, but if there is soreness and inflammation a steroid shot might help delay further activity.

Your feet do sound bad, never mind the large LD nodules which as you say have probably caused the other problems. Presumably the NHS would offer surgery for bone spurs, and also the fibromas which is the last thing we normally recommend, and patients having had it done often regret it. Would a steroid shot (Triamcinolone) help here again, what's to lose? The other main choices would be RT but with the NHS related difficulty already mentioned so probably private; or cryotherapy if you could find someone to do it (I think there is a England private clinic), or the enzyme injections advocated by Dr Davis but that would mean travel in Europe. I would use the appointment with the oncologist to explore their thoughts on all these options, firstly RT using their knowledge base, either via the NHS or privately, and ask about their experience with other patients. Perhaps investigate all these with the idea of paying privately, and try crowd funding to pay for the private treatment with the help of friends, family, university and your hopes for a career in nursing.

Best wishes SB

11/20/21 16:59
GaryCr 
11/20/21 16:59
GaryCr 
Re: Getting fed up, any advice welcome

Hi, thank you for your reply. I'm going to give the RT team this week and see what the waiting time is. At present I have no income as taking time out of university so have no bursary and am only physically able to work 1or 2 shifts a week due to pain therefore I can't afford any private healthcare yet. I want nothing more than to be back in theatres working full time again and to complete my degree.

Do you think the more active I am the worse my feet will get? This is one of my fears.

Kind regards

Gary Creaney

11/20/21 17:44
spanishbuddha 

Administrator

11/20/21 17:44
spanishbuddha 

Administrator

Re: Getting fed up, any advice welcome

GaryCr:
Hi, thank you for your reply. I'm going to give the RT team this week and see what the waiting time is. At present I have no income as taking time out of university so have no bursary and am only physically able to work 1or 2 shifts a week due to pain therefore I can't afford any private healthcare yet. I want nothing more than to be back in theatres working full time again and to complete my degree.

Do you think the more active I am the worse my feet will get? This is one of my fears.

Kind regards

Gary Creaney
That's difficult to answer on an individual basis without knowing the distribution and impact of the fibromas on your feet. Probably as you know with DD we say avoid trauma with the hands but continue using them. I would be a bit concerned about the other issues with your feet. Another patient 'Seph' who posts on here says pushing through (the pain) worked for them, and replied to one of your earlier posts to this effect https://www.dupuytren-online.info/Forum_...-far-1_358.html. You might find a way of in the short term tolerating the pain and discomfort through the modest use of ice, heat, physio, compression, shoe adaption, etc, and find your daily activity can increase, but only you will know. Best wishes

11/21/21 15:53
GaryCr 
11/21/21 15:53
GaryCr 
Re: Getting fed up, any advice welcome

Hi, thank you for the reply. I have just received my appointment for oncology regarding the RT treatment this weekend and also an appointment for my spinal nerve root injections. These along with physio and the insoles I am to get made soon hopefully will help me.

Again thank you for your advice.

Kind regards

Gary

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