My ten year fight with Paget's

[Bart---No1]

It's a first post for me. I have Paget's in my right femur with the complication of micro stress fractures. The consultant at the time recommended no treatment. I was also diagnosed with aggressive prostate cancer which put my Paget's on the back burner. Two years later a micro fracture developed into a full fracture, severe pain over and above the Paget's pain I had been experiencing. It was eventually identified with an x-ray and operated on within twenty four hours. A 12 inch plate and 8 large screws. It took six months to part heal so I could put weight on my leg and two years to fully heal. It resulted in major muscle loss because no physiotherapy was provided. I also had the problem of two bad hips which were also giving me pain. The left hip was replaced after extensive investigations. At that moment in time I changed my consultant to reflect better comprehensive treatment. The Paget's Association helped by advising Nottingham City Hospital, now a Centre of Excellence. It certainly was a good move. I was still in a lot of pain, was it the Paget's or my right hip? I eventually found a orthopaedic surgeon who gave me a new hip. This did entail removing the existing large screws securing my plate repair and replacing with short screws before giving me a new hip, a four and half hour opp. I am seven month on with no pain. My quality of life has greatly improve, no crutches and off the pain killing drugs, tramadol, bupamorphine patches, and paracetomal. It has been a long Ten Years.

[Pantoe]

So happy for you, looks like you had a hard time there, very good luck to you.

[TSanders02251960]

I am sorry to hearthat is was a long process, but happy that you are pain free now. I will have a test next month that should show I am in remission. So fingers crossed and taking my vitamins.

[Mandy5]

Hello Bart. You had a tough time getting the right help but great to hear you are now looked after by a consultant in a Pagets Centre of Excellence. Glad this last surgery went well too.

My husband, Simon has Pagets in his right tibia and had limb reconstruction surgery to correct the bow at another Pagets Centre of Excellence, RNOH. We didn’t know what to expect but the bone healed normally and the leg is much less painful now: the mid point where the outside of the bow used to be is no longer put under stress each step and the tibia now goes into his knee and ankle joints at the right angle so they are both less painful. This should also protect his joints from further damage.

The Pagets Association is amazing - a small charity that punches well above its weight! The information they provide is fantastic and the staff should all have medals in my view.

All the best for your new lease of life :-

[mariana683 in reply to Mandy5]

Hi Mandy,

Which Paget Association are you talking about, the one in UK or USA?

Thanks,

Maria

[Mandy5 in reply to mariana683]

Hello Maria

It’s the Pagets Association in the UK. If there is now one in the US too, that’s a great improvement on a year ago. If there is still not one in the US, you can always become a member of the UK-based Pagets Association. They would then email newsletters to you and you can access support. I’m sure they are glad of all donations & membership fees, as they get no government funding.

Best wishes

Mandy

[mariana683 in reply to Mandy5]

Hi Mandy, thank you for your quick reply. I was in touch with the association in the US years ago. After that they "disappeared" because they did not have anyone to take care of the patient help line. I live in Canada. I used to get the newsletters from them until recently . I am new to Health unlocked but I will start following posts because I think they are very helpful.

All the best,

Maria

[Bart---No1]

The Paget's Association meetings are a wealth of information and as you say the staff are certainly very supportive and proactive. Is Simon's pain from the joints or the Paget's. I assume treatment for the Paget's was given prior to surgery. A single infusion of zoledronate had been given six months prior to my hip operation which had slowed the Paget's down and has certainly helped in taking the pain away.

[Mandy5 in reply to Bart---No1]

Hi Bart. Simon had arthritic-type pain in his knee & ankle because the bent tibia was damaging both joints. They weren’t too bad though, so straightening the tibia has stopped that pain. His shin was achey, red, hot and swollen where the Pagets was most active. He also had zoledronate prior to surgery. It’s amazing what they can do now isn’t it?