Chick I wasn't sure about surgery when first offered I refused it and asked for close survlience but then I thought about the ramifications if I was in a minor car bump or took a tumble he explained that any neurological progression is irreversible in terms of surgery only preventing further decline rather than to make better I can put up with my symptoms as they are but scared of it making me disabled so I caved and said OK I think I'm realistically looking at 6 months here which I'm OK with also gives longer to get over treatment surgery etc from bc both physically and mentally I have found this latest scare a challenge and anxiety levels have crept back up but I'm also reassured my onc isn't too concerned it never rains it pours eh!! Jill it's great to hear from you the condition sounds very challenging and I hope you can get the treatment I'm sorry you are having to have your leg pinned again xx Take care for now ladies Mishy xx
Well I feel I got the lesser woes compared to yourself and Mishy. I am glad that you now have a diagnosis and it is not bone mets. But goodness what a mouthful of a rare condition and so debilitating. I hope you can get the specific treatment that will bring you benefit and relief, and no side effects.
By the way, I am against having surgery because I feel I an still dealing with the results of the cancer surgeries and wayhave enough with them then adding more woes to the list. There are no guarantees with surgery anyway.
Hello Chick - lovely to see you back .Happy New Year to you and Mishy - let's hope it's a better one than last year !! I now have a formal diagnosis of hypophosphatasia which is a rare genetic bone disorder - not mets - the lesser of 2 evils .I have been referred to a specialist in Manchester to see if I qualify for a new ( the only ) treatment - it is very expensive so the criteria is very tight .In the meantime I have to have my right leg pinned in next few weeks - not recovered from last surgery yet and I continue to break ribs just turning over in bed - it's very scary stuff .I see Neurosurgeon again in March and now looks like surgery will def be needed as this condition will just continue to cause my vertebrae to crumble 😬 Sorry you are still in pain Chick - why are you so against surgery ? Mishy good luck with your scan .What timescales have you been given for your op ?
Hi Chick and Jill happy New year chick glad to hear you are doing better re pain and if the injection is working that is probably a lot better than surgery I'm currently on the waiting list for certain spine surgery I didn't want to but weighed up what was the best thing to do and recovery from surgery is a lot better than having a neurological decline in symptoms which can't be reversed so I'm on the list and if things do get worse he will fit me in the list is quite a size so not imminent can't be walking around atm because of black ice no falls I've been told haha!!! So atm I'm having a ct scan Sunday for some shadowing on 5th rib on bc side my onc isn't concerned but radiologist wants a scan to rule out stuff fed up of things popping up to scare the crap out of me!!!!!!! Anyway my onc was reassuring so I'm feeling OK about that I try not to take pain killers as I don't want to get reliant on them only take them now when I'm desperate Jill how's you haven't spoken in a while I hope you have been able to get to the bottom of things Just thought too girls maybe if we had a different thread or hijacked another rather than on the possible bone mets one as I'm sure you will both agree that's a possibility we definitely want to avoid!! Mmm just a thought!!!!! Take care Mishy xxxx
I am on a return visit 😁. Happy New Year to you both (and everyone else) How are you both doing? Have things progressed for the better for both of you? Hope you got a definitive diagnosis Jill.
I eventually got the injection. The doctor who did it said it can take up to 2 weeks to work, another doc said up to 6 weeks, blah blah - make your minds up and do you really know anyway?
So, initially it didn't seem to have any benefit (apart from a blissful evening hours after having it which could have been due to the local!). I also stopped physio sessions as did not see the point of appointments in dribs and drabs to use the specific equipment. Anyway just did my own thing with exercise and the pain killers.
At the moment not taking any regular pain relief and have not done for nearly a week. Still have pain but it is more manageable and variable. I think it has helped to be in a standing position a lot of the time!! Walking can still be a trial but is less painful. I have more pain now at night. Previously, I could sleep on my good side without pain. Now it is painful all night after I have been laying for 1 to 2 hours. It usually wakes me up and then I turn over to my bad side and so on. But at least I can now sleep on the bad side! Painkillers before bed don't help so I don't bother. It also does not help when I get some pains and cramps from the anastrazole as well. A night will be agony every now and again.
I have a review appointment end Jan, so will see if they may risk another injection on me. I was told by physio that they would not if first one did not work - not sure if that is quite right. I would not mind trying once more and I also could argue that things have changed for the better since the first injection. I am resolute that I do not want surgery even though I received another consultation appointment in Dec.
Jesus Jill i really hope they haven't been mucking around delaying treatment but hopefully they will tell you def no mets the other thing sounds unverving but you will be surprised once you see the specialist in that field you could be more settled when you can have everything explained better of course it will not stop you from worrying this cold weather i think is definitely making things worse he explained thst can happen i have been thinking all kinds till he explained in detail everything which thr rheumatology will do just bloody annoying that you have been passed around with no clear answers up to now big hugs and good luck xxx
Thanks Mishy .Glad you have made some progress hope I do move things forward - my DEXA scan said I don't have osteoporosis .Im scared they will say I have mets and I have wasted 6 months not having treatment that could have helped ,the other option is not very appealing either though - rare bone disease with no current treatment funded on NHS !! My ribs are agony this week - I've sent for a support belt thing to see if that helps .
Hey Jill good luck for Thursday hopefully you get some answers i had my meeting today no on surgeon waiting list he has 3 im in the needs it done but not an emergency symptoms quite stable should be in a couple months to 4 which is worse case he wants me to have some extra time to get over chemo rads aa i didn't finish till feb this year and it can hinder healing also need sone bone meds as test came back osteopenia so something is starting but can be sorted with pills i need my bones nice and strong before surgery im having olus side is i can have Christmas unspoilt xx take care x
Keep in touch Jill let me know how you get on im really nervous about my op now i5s quit a lot of spine work so looking like i won't be getting back to work at all now just going yo have to get used to the idea xx
Mishy - half asleep so sorry reply a bit brief -Rheumatology next Thursday 6th Dec , back at neurosurgeon January to discuss op on lower spine ,stil have hole in leg after abcess - Nurses still coming twice a week to dress it .Still on crutches and can't drive .Oncology still can't say 100% not mets but looks more likely rare bone disorder - not a great outcome either as no treatment apart from surgery - DEXA scan says not osteoporosis so other things causing fractures - so prob a choice between 2 rubbish options - oh well . Applied for and got my disabled car badge just need to be able to get in car to use it now .Good luck Monday - I will opt for op too as my symptoms are also pretty scary .x
Hi Jill Chick not posted in a while on this thread been having a bit of a time with anxiety since my last app with neuro how are you both doing i hope everything is ok for you both Ihad my bone density checked last week should find out results at gp app tomorrow got my surgeon appointment on Monday with surgery date i def think i have to get it done i have been having some awful and at times pretty scary symptoms so i think i just have to grit my teeth and got on with it It has brought alot of fears about bc back too which i think were probably still there as with all of us but have resurfaced thanks to my setback Jill hows your leg now i hope its better and you are at least getting some relief Chick did you get the injection and if so did it help xx Take care lovely ladies xx mishy x
Oh Mishy can totally sympathise re your appointment I really don't think I asked any questions apart from "do you think it's is secondaries" when I saw neurologist - it was only after leaving that I looked into what Id been told and thought * *** should have asked more questions this is serious stuff .How depressing that he doesn't think things can be improved just stopped from getting worse - can that be right ?? I'm pretty sure I was told taking pressure off spinal cord would help relieve symptoms .The thing with my neck is also pretty scary as it actually means that because of a malformation of my skull part of my brain is poking down into spinal canal !!!! Looks like symptoms can be helped with that too but again it's major surgery.I understand how you feel about work too ,I lost my job after 12 months off sick and have not been well enough even to consider voluntary work since my hysterectomy for womb last year - feel like my life has shrunk very small indeed and very jealous of those living their lives to the full post treatment .Good idea that you are going back to see surgeon to discuss in more detail - is he sure the op won't improve things for you ?? I have appt with rheumatology on 6th December so will not be any closer a diagnosis til then .x
Hi Jill the ribs he just felt them!!!! He checked my last bone scan (jan) which was clear very confident its that, my neuro app on the other hand i was offered surgery there and then to be out in his list or think it over or see him in 3 months to be monitored cant make anything better surgery is to stop it getting worse 😨 says i can end up getting balance problems arm weakness leg weakness as it progresses and if this happens it cant be reversed he is also concerned about me not falling as tbis could injure my neck more the prospect of becoming disaled by this is scaring me he can't say how long etc as everyone is different, its not a severe compression which would need immediate surgery but you could clearly see on scans my spinal cord is being squashed in a couple of places which is causing the problems i have got dropping things clumsy hands etche also asked what was my job i explained that i haven't been able to go back as after bc treatment this has also started so he said oh thats ok then?! i chickened out and left appointment saying I'll see you in 3 months probably not the best way to handle it so i have decided to see him again and discuss surgery properly the pros cons etc it doesn't help when because clinic is running over you feel rushed and i was also stressed before i went hopefully when i see him next we can come to a sensible decision for me after all i don't want to end up potentially in a wheelchair through it sorry for the moan and rant girls i just felt so damn deflated yesterday when i got home Jill how are you getting along lovely i hope you are feeling a little better after leg surgery have you had any appointments yet its so tiring isnt goung to different appointments i really envy the ladies who have been abke to get back to some kind of normality after their bc treatment xx
Chick - sorry you are still struggling so much and yes I totally understand how you feel .Ive given up telling the truth when people ask how I am and the list of ailments is so long and depressing !! The most debilitating at the moment is my ribs - which I'm sure I'm aggravating due to using crutches .Mishy how did your Onc diagnose your rib issue ?
Hi Chick i know exactly what you mean how frustrating for you but as you say surgeon may speed things up for you, sometimes i think its also good having a break from forum too, it can be good for us, i do think exercise can help i make an effort to walk every day im even thinking of doing some tai chi as its not as strenuous but still exercise i feel the same too re surgery i really would prefer to not have to have it sick of being a patient and sick of second guessing everything after bc i think i need some much needed respite from it all, we all do Jill hope you are ok too i think once you have some answers you will be happier too Stay positive ladies remember we are 💪 we have been through a long haul so we need to be kind to ourselves xxxx Mishy