Hello I am new to this group

[Lamados1954]

since joining this group it has been an absolute eye opener . I have long term complications from pelvic radiation and reading on here others experienced it’s endless . I am so glad I found this group it has been a massive help in understanding what is wrong with me and why I am experiencing daily problems . Now I have learnt it caused atherosclerotic changes . My main problem is that it has caused bones changes in my back and hips and I have a fracture in my back it’s a struggle to walk but I push myself my fear is to be totally immobile . I am knew to this site and I hope I am using this appropriately Best wishes to everyone on here.

[Blue_Hawaii]

welcome

Sorry you are going through this Dreadful disease

Known you are not alone

Hope see you at the chat together

Enjoy your Christmas

[Lamados1954 in reply to Blue_Hawaii]

Thankyou Blue Hawaii I was scrolling through posts on this site and it looks like I missed your lovely message as I only just seen it this morning I am fairly new and I’m learning on how to navigating around the site and the live chat I have never been on one I must keep a look out for it . I have found this group very informative and just receiving a messages from lovely people like yourself really makes a difference . Hope you are well sending love and good wishes ❤️

[JDKPA]

I have had many bone issues too. Two years ago, a broken arm. Before that, I fractured my back and it has never healed ---- thus I can only stand for 15-20 minutes at a time. I can walk okay but only for a few minutes. If I want to take a walk, I use walking sticks or a rollator. Quality of life is not what I imagined it would be.

[Lamados1954 in reply to JDKPA]

I hope you don’t mind me asking how did you fracture your back ? Mine was spontaneous from radiotherapy as I had osteoporosis it was weakened but it took over 12 months to get a Dexa scan to get this confirmed and to get treatment I’m due for an injection on the 18th Feb which is yearly intravenous Zoledronate which strengthens bones . I have just purchased a rollator one that I can sit on . I hope you are healing

[JDKPA in reply to Lamados1954]

I fell. Got out of my wheelchair about a 2 weeks after knee surgery and fell straight down to the floor. compression fracture that has never really healed. I have "NO OPIATES " on all my records and I think that had been ignored as I had been quite dizzy. I found out that I had osteoporosis and started a drug called RECLAST, a once a year infusion to strengthen bones(sounds like what you are getting too). I have been getting it for 4 years and bones are much better. At some point I had kyphoplasty to insert cement between vertabrae to stabilize them.

I love a rollator although I do not use it that much now. I had such trouble walking for years and was finally diagnosed with NPH (normal pressure hydrocephalus) a brain problem that is often not diagnosed correctly. It is the only curable form of dementia. I had had 4 brain MRIs and 4 neurologists who missed it! Shocking. So I had brain surgery 2 years ago to insert a shunt in my brain which removes the excess fluid. It truly was a miracle.

Are you in the U.S.? Why did it take so long to get a Dexascan? I just had one and had to wait 2 weeks.

Healing thoughts for you!

[Lamados1954 in reply to JDKPA]

I’m in the UK I had to ask my oncologist for treatment for the fracture in my spine when we were discussing it she was surprised I hadn’t already been referred to a specialist .the waiting lists in the UK are long I have lost confidence in my oncologist she is quite scatty . I saw her last week for the result of my last CT pelvis she said the growth is stable but I have had a bad few days with a lot of pelvic pain with bowel and urinary problems which makes me feel shes got it wrong shes referred me to a gastroenterologist but will go privately if I am waiting too long as it’s really affecting my quality of life . Gosh you really have been through it and to think they missed something do serious in your brain really makes you doubt what you are being told but thankfully you got there and had the shunt fitted it doesn’t bear thinking about if this wasn’t treated properly . You must be very strong to deal with everything sending you love ❤️

[JDKPA]

Not sure how strong I am but I am too pissed off to die. I am 78 and am lucky to have lived this long. So now I have to deal with all the old-age stuff too. Not fun!Your oncologist sounds...flaky!!!

We have a hospital system in my area (Delaware and Southeastern Pennsylvania) that has such a monopoly/stranglehold on the whole area. Lots of incompetent doctors, main hospital is filthy, orders followed, long waits in emergency (you call it A and E, I think).

We have recently switched our health care over to doctors in another hospital system....that is where my NPH was diagnosed.

Will you be having any treatment for your back? I have been told thatI have spinal stenosis, but am not about to have any surgery for that. I also have a Sacral Insufficiency Fracture which I suspect is causing a lot of my pain. This is a really interesting article and I have thought about having a sacroplasty.

concordortho.com/patient-re...

Good thoughts to you

[Lamados1954 in reply to JDKPA]

You made me chuckle 😂 I’m 70 and I have one friend left from my old group we have been friends for over 40 years were talking yesterday how old age sucks we compare our aches and pains but I’m happy that I have all my marbles (just ) I love your sense of humour . We in the UK have the impression your hospitals are gold standard . It must be the hospital programmes we watch 🤣 we put our faith and trust in the health care professionals to get it right but unfortunately they don’t always and we have to be our own advocates . The problem here in the UK is accessing the care you need once in the system it is efficient . Twice in my life I have had to try and get an emergency ambulance the first time I had a blocked kidney ( from the tumour this was how it was found ) I was in agony but couldn’t get one I drove myself to the emergency department ) after a long wait and once I saw the consultant everything sped up the second time I had a heart attack caused from the first round of chemo I couldn’t get an ambulance my son drove like a formulae one driver to get me to A&E again once I had and ECG I was in the cath lab pronto having a stent fitted . I was an RN for 40 years retired 6 years ago my speciality was cardiology . Being on the other side of the fence is awful plus a little knowledge sometimes isn’t good . I have been thinking of getting a second opinion but I know it will affect my professional relationship with my oncologist . I fractured my lumber spine at 21 a horse riding accident and thought the fracture I have now was that area as it must be weakened but they tell me it’s new . The only treatment i have been offered is this infusion of Zoledronate I have done some research and there doesn’t seem to be anything else on offer except physio I have oestroarthritis in my hips so it should help. I hope you are doing well you sound like a very strong character it’s lovely to know you I hope you are doing well ❤️

[JDKPA]

Lovely to know you too. I hope the physio (we call it Physical Therapy-PT) helps your hips. I have done every kind of PT for so many years and for so many problems that I think I could be a therapist! Regretfully, not much of it has done me any good.

Second opinions are tricky, and awkward but here, we are encouraged to get them.

I think it is very nerve-wracking to know that we have to be our own advocates. And scary to know that we are in charge. At least you have medical knowledge! We do have a couple of doctors and a nurse in the family, and a friend's daughter is a P.A. (physician's assistant, highly trained, can go into practice themselves). I try to soak in as much info as I can.

Your emergency events sound very frightening. I am not sure what can else be done for your back fracture. I was sent to PT, which was agonizing. Then I had some "slippage" and had kyphoplasty (cement put in between some bones to keep them stable), and nothing since then. I went to a spine specialist in Philadelphia, about an hour away at a renowned hospital. He said I have spinal stenosis and wanted to do surgery, which is long and difficult and has a 7-12 month recovery! No thanks! I do not want to spend the precious time that I have left in recovery. So I live with the pain, can stand for 15 minutes at a time, use lots of heat, and take ibuprofin a few days a week. I have a hard time walking due to a painful foot problem, so I do not really go for walks or anything like that.

Yes, those hospital shows on TV paint quite the picture, don't they? And lots of drama too! Which ones do you watch?

I have a good friend in Provence. Her husband felt "funny" a few days ago and his primary care doctor told him he needed to get an MRI since he had a small stroke last year. Yesterday, he was walking funny and my friend called 911 but he refused to go to the ER so an ER doctor was sent to their house. Have never heard of such a thing! The doctor called an ambulance and off they went to the nearby hospital in their small city. She was not allowed in. I wonder if that is the norm or if it is because of COVID and/or the flu? After hours of testing it was determined that he had had another stroke, on the same side. The little city has only 3 MRI machines and they cannot schedule him for the MRI until March 27 !!!!

Here in the U.S., the flu is running rapant, numbers are terrible, and there have been may deaths. It is pretty awful.

Should we take our conversation to email? If so, how? I do not mind posting my e-mail here.........

JoAnn

[Lamados1954 in reply to JDKPA]

Good morning from South Wales UK I have never heard of a medic visiting a patient at home that’s amazing and your friend must have been relieved that her husband had the treatment he needed. Well done to the local hospital there. I think you are very wise not to have had surgery on your back as you said you would have been laid up for so long and there’s no guarantee it would be successful . I am due for this infusion of Zoledronic acid tomorrow 18th apparently it’s once a year and protects your bones in the case of oestroporosis . I have just had another severe urinary tract infection . I had a cystoscopy following completion of radiotherapy as I was bleeding from my bladder I was impressed as I was seen so quickly thankfully it wasn’t due to any spread just severe inflammation from treatment they said it was so inflamed it was glowing !!! Luckily I didn’t have any external problems with my skin as some people experience. It’s just learning to live with these complications as they arise but I would say as most on here appear to have the same experience no one prepares you for the possible long term complications or can answer questions It is part of the treatment plan to refer you to the Palliative care team (the word conjures up doom and panic ) again it wasn’t explained to me that this is routine to deal with any adverse affects of treatment it’s not just there for end of life . From my experience during follow up I would be told snippets of things that I should have been informed about earlier which is so frustrating for example I was told that there was an area on the tumour that raised red flags on further questioning and probing it had shown up 3 months earlier on my scan but I wasn’t told ,when I was eventually informed they said it was extremely small and could be inflammation but we wouldn’t know unless it was biopsied I was given a choice 1. To have a biopsy 2. To watch and wait . I chose to wait and glad that I did as it disappeared. When you said in your little city you only have 3 MRI machines here in a large teaching hospital we have 3 and if one breaks down we share with other hospitals and visa versa . It would be lovely if you would like to chat and would welcome your e mail . Hope you are well and look forward to hearing from you ❤️