Husband's TURBT journey and severe hip/knee pain

Wow! Some people never fail to amaze me! How very rude of that physios! I'm glad you had words!

I will keep you posted but in the meantime, thanks for your support xx

I was polite but had to grit my teeth and explain as my mothers carer I was used to all her aches  and health problems but had never seen her crying in pain.My mother had to learn to walk again following a brain haemorrhage and was never lazy it was her determination that got her through.Yes please keep us updated.I’m hoping your husband gets some answers asap.Jane xx

Dear B2theC, I must back what Latestart says about osteoporosis/osteopenia.

But what few people know, I was told by a physio who had previously worked at the Royal Orthopaedic Hospital Stanmore, is that the 'AdCal' etc issued by the NHS are ZERO benefit. The body cannot absorb a useful amount of calcium in the form of calcium carbonate [chalk]. 

I am under the Metabolic Bone Unit in Sheffield, and they approve my taking, which I buy for myself, calcium citrate tablets from a reputable supplier. Anyone wanting the name could pm me. While these have Vitamin D with them, latest research indicates this alone is not all that is needed to maintain bone strength. Vitamin K helps direct the calcium to the bones, as you do not want calcium depositing in soft tissues eg organs.

Anyone contemplating taking any type of bisphosphonates, eg alendronic acid, should [firm advice from NHS dentist] have a dental check and any necessary work first. The bisphosphonates work by stopping the cell turnover in the bone marrow including the jaw. Any infected tooth root risks causing a nasty situation of infected jawbone which being 'dead' does not fight the infection. [It's called BRONJ ]

Hope this is helpful.

Denby

Wow! Thank you!

Hi Denby, many thanks for your information. My daughter's a dentist and before I started on bisphosphonates she gave me a really good check up (and since of course). I work hard on my dental hygiene too, chemo knocked it back a bit but the hygienist was very happy again recently.

Because of my spontaneous  hip fracture I made sure to be referred to Stanmore but they've never said anything re adcal (though daughter has been trying to get me to take Vit K).

The GP cut my adcal dose in half a year or two ago because of potential heart problems with calcium in the blood. So I'm interested in the Calcium Citrate tablets you mention. My next  Stanmore appointment has been delayed and since the hormonal injections several years ago they've been  topping me up on Zoledronate infusions to maintain density. But not for 3 years - pre-cancer - and since then I've had a lot of steroids to cancel out side effects of immunotherapy. 

I'm hoping my regular walking has been protecting my bones but until I have my next dexa who knows.

No idea how to do direct messaging on here I'm afraid.

All the best,

Latestart

Hi B2theC

I had something very similar at the beginning of my journey, I had pain in the hip radiating down the leg into my knee and eventually to my foot. Almost sciatic like pain. The doctors put it down to the positioning when having my TURBT but it was there before. It has now worn off and I am now on now pain relief at all after finding refuge with pregablin. I have put it down to the way I positioned myself prediagnosis to stop the pain in my bladder. I still find myself tilting in the car or when I watch tv, but it is habit now rather than pain. I hope it is very similar for your husband, good luck! 

M too! Thank you. He has just rung the hospital again.

Hi Latestart,

I'm glad you mentioned the heart issue with excess calcium. That lovely ex-Stanmore physio mentioned it too but I didn't want to pack over much into that post. I've requested friendship with you so if you choose to accept, that will allow us to exchange private messages.

Best, Denby

It says I've accepted so will wait and see what you send. Thank you very much.

Latestart

Hi B2theC

I have also been suffering with hip and knee pain which is getting worse

I have made a GP appointment for the 10th June but I am interested if the Private hip specialist is able to help 

Much Love, Tina x