[emmajParticipant]

Hi

I  38 and am new to this forum and in space of 3 weeks my world has been turned upside down. After months of pain in my legs and back and herendous pain in my hips and slowly getting worse over the last few weeks and it being put down to muscle pain by my gp.

I now find myself as in patient in hospital with a myloma diagnosis confirmed 2nd May 2017 with a bad dislocated hip and pelvic fracture prob as result weakened bone as result of the myloma. My leg is in traction currently and I am bed bound. Will be like this for next 6 weeks at least as they need to come up with a plan to ensure the bone is strong enough to be able fix the hip. i know i have some of the best surgeons in the field looking into it because of the hospital I am at. I have started my chemo and responded well. If it wasnt for fracture id be going ok and having treatment for my myloma in outpatient appointments.

The whole myloma diagnosis really isnt bothering me. Its the fact that i have weak bones and a bad fracture. I cant quite get me head round how they can fix it. Going from totally independent to dependent in a matter of weeks. Im scared right now i cant be fixed. And wont walk again or have some quality of life. Its a catch 22 they want to ensure the bone is stable enough to fix hip but not sure how much treatment il need to control myloma.

They seem to have my pain under control now with 2 slow relasing morphine morning and night and liquid oromorph as when required. Parocetomol inbetween.

Has anyone else had any experience of a fracture being caused by the myloma? How did you cope with the long wait? What go through it? did you walk again?

 

 

[sabsParticipant]

Hi Emmaj,

I can’t pretend to know what you are going through and I’m afraid I don’t have any answers I have been asking the same questions, my finance is 39 and had back complains for months before anything was done. He has a pending collapse of a vertebra and is walking around currently in a fixed molded body brace, two thirds of one of his main vertebra the bone density has all but gone and is being pinned up literally by a small amount of new bone growth. I was asking the same questions, and though the MM is bad it seems to take a second seat to getting his life back on track and dealing with the MM as it comes with the Chemo.

Yesterday we had our Cycle 2 clinic appointment – while we are dealing with a MM Spinal surgeon who we wont see again till the end of June, but we have hope that he can make a full-ish recovery, while his bones wont be the same as what they were the body does adapt to compensate, I guess you could look at it like having a fracture or break from an accident and you heal, this time around just a little slower and you are a little more fragile. My other half will be starting a drug next week to help strengthen the bones (i believe this to be a once monthly IV drug same time as he has one of his chemo sessions) but they do believe that his vertebra will heal to the point that no brace will be required after X amount of months, and with the chemo working on the MM he should go back to leading a relatively normal life. We then monitor the status of his MM and hope that any signs will be caught before any other damage is done. He is currently refusing to take any pain medication but that is purely his choice – I think he likes to know exactly how he is feeling and when is a good day and when is a bad day so he knows when not to over do it. If he isn’t careful he can cause spinal damage and paralysis so everything for him is touch and go now.

I am truly sorry  to hear what happened to you, I guess you start putting things into perspective and just like us over night your world changes – it has been two months now since he got his diagnosis and I cant pretend that life has gone back to normal yet, we are still finding out new things every week – and not necessarily for the good, its definitely a roller coaster ride, which I would love to get off.

But my thoughts are with you at this time and I hope things go well with your treatment. Please keep me updated on how your progress goes, your similarity to my other half is all too familiar if very extreme .

Regards, Sab’s

[Author]

Posts