Support thread for those awaiting (and undergoing and recovering from) medical appointments,tests and surgery: PART TWO

[BreastmilkDoesAFabLatte]

This is a continuation of this thread, started a few months back by ohyouBadBadkitten as "a thread for you to vent in or post your 'hooray's'". Everyone is welcome, regardless of the nature or duration of their illnesses and whether or not they have a diagnosis. The last thread dealt with a real diversity of long-term and acute conditions, as well as many of the mental health challenges and fertility questions commonly associated with them.

We should probably add the standard sort of disclaimer about not necessarily being qualified or insured to offer proper medical advice, which means that if your symptoms start to sound a bit scary you'll get a few of us rather assertively shoving you in the direction of your local A&E department. As madsometimes puts it, "A&E for Mumsnetters would have Boden medical gowns, Farrow & Ball paint schemes and fruit shoot free vending machines selling organic elderflower presse. Pinot Grigio would be dispensed at wine o'clock. There would be public information posters warning about the dangers of googling Dragon Butter... the injuries resulting from Friday night threads would be quite horrific." However, we all know the reality of medical emeregncies to be signifiantly more stresfull than that, so if it's not life-threaningly urgent, we'll hold your hand and chat and support and speculate on the basis of the reasonably half-informed knowledge gained by our own life experiences.

Welcome. The kettle is on...

Thank you both so much for all your support today. I've given the DCs an early night and crawled into bed with a hot chocolate... and I don't intend to move from it until someone wakes up wanting boob.

In a final twist to a thoroughly mad day, one of the buses back was cancelled and it took me over an hour longer than it should have to return home. But I got back to find DD prancing around the living room with the middle of a kitchen roll, proudly announcing she was doing gymnastics with the Olympic torch. Puts it all into perspective.

just waiting for DH to sort hmself out to take me througgh to the hospital - my breathing has got worse over the weekend, and I have constant chest pain now, so I reckon that counts as "if it gets worse got to A&E and make a fuss".

Will let you know how i get on...

Good luck ISWM

Hopefully A&E will not be too bad on a Tuesday morning, there shouldn't be the usual drunks, and people up for a fight. I'm sorry that you've had such a rough weekend.

Good luck ISWM

It should be a quiet time for A&E. Let us know what's happening when you can...

typed a long post which i managed to delete .

Quick summary, it's probably not heart as none of the very many blood tests showed anything; it's more likely to be lung related, although my chest sounds clear, ad the xray was clear. I've been bumped back to the GP for "more investigative work", but need to keep the echo appointment just in case.

Managed to get a GP appointment for Monday, by which time the hospital report should be here, so may be some progress next week....

Really glad that it's not your heart. That's one worry to cross off your list. Sometimes the unknown can be less worrying than the known: at least you don't have heart failure.

But being stuck without diagnosis or treatment whilst in pain is also a really unpleasant place to be. Is your GP good at pushing for the referrals/investigations you need?

BM i guess, you knew the hospitalthatyoureallyreallyfear was a possibility as a transfer and on the plus side, you have now been there for a coffee without anything dramatic happening or you not managing it. Even if the coffee was shit.

midnight glad it is not your heart. Hope you get to the bottom of it, and whatever it is, they hurry up and diagnose it for you, you have gone on too long with 'investigations' and actually need treatment.

Hope everyone else is ok. oyggb did you get tickets. I so so wanted to be at the canoe slalom. that is probably my favourite event to watch, followed by swimming then sailing. But weirdly i also got quite vocal earlier in the week watching the clay shooting or whatever sport that was! even that was good when we won gold.

Evening. I am rubbish at mumsnet when there is Olympics to watch. So addictive. Am sure the tension can't be good for us viewers!

Midnight - I hope you feel a bit better. Good that all their tests were normal but back to frustration and worry when things are unknown. I can well imagine how you feel after my trip to A&E which had a similar outcome. I hope your GP can expedite things or refer to a specialist or something soon. I suspect the best thing to do is see your GP regularly so that they realise how things really are.

BM - I hope that this time round you will have a better experience at the hospital that must not be named. Bless your DD and her olympic torch. How gorgeous.

TeamGB - I think constant spotting and bleeding is quite common soon after a mirena and is probably worse in your case because of the warfarin. Stick with it as most people do stop having periods altogether. Imagine how nice that would be. Am almost tempted myself although ridiculously given my recent health issues DH and I have not completely ruled out trying for a baby! Perhaps not just yet.

Pavlov and OYBBK - how are you doing.

I am not too bad. Got really tired last week due to two long days at Olympic venues. And sleeping on Camp bed or sofa bed all week. That meant my leg and arm were really heavy and achey - worse than they have been since January which was a bit of a reality check I suppose. Just when I manage to convince myself that I am nearly back to normal something rears its head to remind me. Not much of that chest and shoulder pain though so that's good. And I suppose most importantly I have not had any new neurological events which was the whole point of the surgery I suppose. Anyway off to bed now. DS2's birthday tomorrow. Nice family day planned with lots of Lego building!

Hey all.

Finally. Finally I am getting somewhere. Only taken me crying my eyes out on multiple occasions for medical professionals to realise I am Not Going Away.

Doc has referred me to pain clinic. delayed as he did not weigh me/take blood pressure/ask me if i smoked/how much i drank. So it got delayed while this happened (luckily i was going in for my prolactin discussion). It took me crying, not for the first time, but certainly this time it got his attention. Shame it took me humiliating myself and breaking down to get that referral.

I then lost composure again yesterday in front of physio felt very sorry for myself indeed. She thinks I should be referred to a neurosurgeon, or at the very least another MRI, with view of neurosurgery referral. She spoke to my GP who agreed to refer me to spinal gateway, to assess whether to go down neurosurgery or pain management route. He has already referred me to the Pain clinic but this team will assess if I am suitable for neurosurgery route. Not sure if the physio or GP spoke to pain clinic but physio said said that they had passed my referral to the spinal gateway team. Not sure if it was the physio sticking a rocket up someones backside, or coincidence and already been done, but I had a letter on my doorstep this morning from the central assessment team saying they had called me without success yesterday, and asking for me to call them to choose which hospital I wish to be seen at, the time and the date.

So I have gone almost 8 months pushing fighting, hassling, and then less 24 hours of physio talking about neurosurgery referral (and less than one week after the referral actually got sent off by GP admin) I get a letter to arrange an assessment wtf? Even if it were coincidence and the GP referral did this, that is less than one week from referral being sent to them, to them calling me on the phone! Nuts. But, who cares?! at least it is happening.

And physio has agreed I need crutches on my bad days but stressed I do not use them at every opportunity as I will lose the ability to bear weight using my back/leg muscles very quickly and will then become reliant on them permanently.

Pavlov - great news. I'm so glad you are getting somewhere at last. You should at least get straight talking from the neurosurgery team. I have a friend who had a disc removed from her cervical spine for a similar problem and she has done really well since. Crying and being persistent does pay off! I think sometimes it takes a show of real emotion to get professionals to realise the impact of health problems. You must be relieved. Hope the occasional crutches help.

i am not convinced yet. i expect i will go on a good day and they will say 'oh look you are doing alright, off you toddle'. that seems to be what has happened so far. I am not actually that excited. I am so fed up, and so worn out emotionally. I normally keep it together pretty well, but have been so emotional and have cried so much more in the last week than I have in a long time. I feel like life has passed me by, I spent a long time procrastinating and things i wanted to do i have not done and now can't do those things and it is finally hitting me that i have fucked things up and have lost the chances to do so many things i wanted to do. Just wasted it all. And I just don't see that surgery will be offered while I have some 'good days' albeit infrequently. I just have little hope and faith that this is ever going away. i actually seem to find it difficult to speak to anyone professional atm without crying. Luckily my friends don't bother asking, or even though we talk about my back, it is all 'clinical' and held together. No-one actually really knows how devestated I am. No-one actually seems that interested, so I don't cry in front of them.

in fact, i cannot talk about it at all with any emotion without crying (as I said, friends don't ask awkward questions!) I cry a lot on my own at the moment, which I know is not good. It feels like my life has all gone horribly wrong and I took so much for granted. I just want to go back to how it was before, and I can't. Not even with surgery. The best I can hope for is 'better'.

and that is why I did not want to offload to you all, as this is so minor compared to the significant shit you are all going through or have done.

Sorry.

Pavlov, I'm so pleased that you finally have the referral to the spinal gateway, after all those months of being fobbed of with an osteopath that didn't doing any fricking osteopathy. I'm not surprised you have been crying, and crying A Lot.

I totally understand why you feel so devastated. In fact, while watching the Olympics I have been thinking of you, especially while watching the canoeing and kayaking. (I love the canoe slalom too, really exciting). I was thinking, Pavlov could do this stuff, and now not only can she not do this, but on some days she struggles to take herself to the loo . It's as if the Pavlov that you previously were has been taken away.

You keep saying that your problems are trivial, but actually very few of us struggle on day to day basis in the way that you do during a flare up. Your current bout has lasted far too long, so I'm really pleased that you managed to get to the physio. She sees people with your type of problem every day, and if she thinks that you are suffering too much, then I think it's safe to say that you are.

Keep venting here. We all know what you mean about complaining too much to friends in RL. You don't necessarily want to say how you are feeling, particularly if you are out for a meal or a drink and everyone's having fun. Who wants to lower the mood or be seen as a victim, so even if they are understanding lovely friends sometimes it's easier to put up and shut up.

Will you find out today how long you will need to wait to see the spinal gateway team? Hopefully before Christmas not too long. I know you're worried that you will get the appointment during a remission, but you have your MRI so the evidence of your back pain is there to be seen.

Me, I am going to be patient with my Mirena. My GP said to expect erratic bleeding for three months, and I'm going to give it at least that, and probably six months. If I bleed every day for six months, then I shall be severely pissed off though. At least it's not heavy and flooding through any more.

Mad is saying very wise things Pavlov. What you are going through is far from trivial, it has been completely life changing. I really really hope that you are finally on the right path to get some real help.

Mad, what a nuisance that your Mirena isnt settling down. How annoying of it!

Midnight, I'm glad it isnt your heart, now you need to get to the bottom of what it is :)

Ginger, I think it is easy when things are happy and you are feeling well, to forget and push yourself too far, but I'm glad you got to go to the olympics :)

I went to the triathlon in Hyde park. It was utterly superb. We managed to coral a little spot with bags and stretching out our legs so I could sit down until it nearly started. I did get a bit worried about going faint once it had started cos there was no space to sit down then and the crowd was about 50 deep, but although I got very tired, I didnt go faint. No idea why, but I'm not complaining HR must have been about a billion bpm when the Brownlee brothers ran past on their final lap!
Was beyond exhausted yesterday, but hey, it was worth it

thanks ladies. I feel better today. I won't tomorrow as I went to Totnes with the children and a friend, walked too far/up hills. DS wanted to go on a train. And, i decided, sod it, I am not doing to stop doing things in case it makes things worse, as then, when it does get worse again, i wont be able to do them anyway. So, I took max dose of everything and got on with it. Took minimal stuff, and light stroller (my new £20 bargain purchase, cheep strollers are great!, no thrills = nothing to carry other than the stroller!). Did not bother with a picnic, took some nibbles, and bought lunch out so we did not have to carry. My friend either took the bag, or pushed the pushchair, and sometimes when DS was walking the pushchair took the bag! Spoilt the children rotten, but now hurting!

physio tomorrow. she said she is going to 'do some hands on' this time, whatever that means

oyggb i had the merina coil. i spotted/bled constantly for almost 3 months. in a bit of pain, told to 'give it time to settle'. went back again, feeling silly and wimpish, to be told i was bleeding constantly as it had 'fallen' out and was stuck halfway down! the doc said 'has your husband not noticed anything?' to which i replied 'not let him near me, so no!' taken out and not put back in. Now, if you want a contraceptive that reduces periods. Try the implant. No periods for me! lovely. for some people it can increase periods, but for most, it lightens or stops them. But, maybe you have explored that already and no good?

I worry about mood changes with the implant. I'm a bit prone unfortunately.

Thats the spirit with your outing :) I've decided life is for living and if you constantly live it worrying about the consequences, it really limits potential for enjoyment. I hope the payback isnt too rough today.

at Mirena half way out of you. I'm not in any pain, so I don't think that's happening to me

I think I have my normal period at the moment, because the bleeding is more than it has been and it's due now. However as there has been no gap in bleeding since my last period when the coil was inserted and now it's hard to tell .

you won't need to check! you would feel it! it felt like something was stabbing at my insides. I did feel, and I felt really thing wire. was told 'ooooh nooo that is the string'. er. no! that is not what is happening to you, as i said you will know!

payback reasonable this morning. this afternoon more problematic, but sod it. crutches are not good together really, as they get in the way, i am meant to use them opposite the other leg, like my arm swing, but it does not help loads. What I want to do, is use them like i had a broken leg but with no hopping! physio said that is not normal posture and will cause more problems long term, even though short term it feels easier, got to try and replicate normal posture with them as support, not them as my sole support. So, I am using one, just to steady and keep me more upright and that is working well.

got my date, 21 Aug at 2pm that is two weeks! weekly physio to continue although she admits it is not really doing much, she has referred me to colleague who has specialism in backs for next two weeks (one week she is on leave). the assessment team is physio led spinal pathway, not sure what that means, is there any other kind of spinal pathway? , except told to expect them to prod and poke me (physical examination) and bring list of pain medication.

Hope you are all feeling ok and enjoying the sunshine

Hi everyone, how's things? Who's been watching the Olympics? I've watched some of it, but I'm particularly looking forward to watching some of the Paralympics.
I've had my pre assessment for my spine surgery but surgeon said it won't be til end of september / October.
I've also saw neurosurgeon, if surgery doesn't reduce my pain significantly (which it prob won't) then he said he is happy to go ahead with a intracathetal morphine pump (delivering straight to spinal cord). Which may help and be slightly better than oral morphine that i take as this flows around all my organs, where as morphine pump will just be spinal cord and brain.
It all does sound really scary when I think about it. But the pain is so excruciating I'll do almost anything to make it better/reduce it.

I had my breast surgery on the 19th June, got infection on one of wounds it then healed up.
I have now got infection on other wound. It had healed up, but some internal stitches worked there way out (and still are) and at the opening that has been created, part of my inner flesh (sorry for detail) is poking through and has got infected.
(I hope this heals as soon as possible)

Reeny, I've been glued to the olympics, and am feeling slightly bereft now that it's finished. Bring on the Paras. I love Tanni Grey-Thompson, she's a brilliant broadcaster - I have girl crush on her .

I'm sorry that you've had so many infections after your surgeries. Do the doctors know why you are so at risk, and is there anything they can do to mitigate the chances of infection recurring in the future?

You still have quite some waiting before your spinal surgery, but if I remember correctly, you have been waiting a year already . I really hope that something can be done to reduce your pain.

OYGGB, best of luck for your appointment this week. I am perhaps naively crossing my fingers and toes that your cardio will not make you wait for your tilt table test before any decisions on treatment are made.

aargh, just had a call as I was reading this thread from the doctors surgery, they've had a cancellation and offered me my echo at 1.30 today! This is after a follow up to the GP yesterday after my A&E visit last week (so I suspect he's had a word as he wasn't happy my urgent referral to cardiology hasn't progressed yet to an actual appointment, so I have to chase that up as well).

I'm also being referred to the chest clinic at the hospital (still need cardio to rule that out officially as well though), and we're trying some more steroid tablets.

Right, off to try and sort out some childcare (DD3 is 10, and hasn't been left at home by herself yet, so this is a bit too long for me to be happy; D2 has a music lesson, so can't babysit). Hopefully the technician will be happy to tell me what's going on, rather than "I'll write to your GP" [fingers crossed]

ow, Reenypip - can they sort that out OK?

quick update cos I'm working not MNetting unofficially, nothing wrong with the heart , so need to check what GP wants me to do re cardio referral. I think now we're looking at lungs, but Dr Google hasn't been much help, as I have some symptoms of a lot of things, but not enough of any one condition to say "perhaps we should look at X". If I smoked I'd've had a diagnosis by now .

ISWM, great news about your heart being healthy. I know it doesn't really help with not knowing what's wrong, but it's one scary thing to cross off the list .

Good luck with the chest clinic.

reeny - what a nightmare with your infections :( did they not pick anything up with your pre-op swabs? I'm glad that your surgeon has a back up plan, even if it does sound rather scary.

ISWM, brilliant news that your heart looked structurally ok :) it maybe that a cardiologist would want you on a 24 hour tape, to check out any potential electrical issues.

I saw the registrar yesterday. My TOE showed a very slight mitral regurgitation and that was it. I didnt think to ask 'so what is causing the murmur?' doh! So no pda or shunts which is good news :).

We are moving forward - she asked if I'd had the TTT and I said it was due to be another 4 weeks. I showed her my collection of readings which show that my hR jumps 50bpm between lying and standing with the blood pressure dropping some. I asked her if it was POTS (postural orthostatic tachycardia) and she said probably, esp considering my other symptoms, but we need the TTT to confirm. So I asked her if we can treat it as such in the mean time and she agreed :) so I'm on ivabradine.

Took first dose yesterday evening. It really made a big difference to HR. In the middle of the night though I had a long period of tachy which was horrible. This morning my standing HR is only 101 (lying down is 68) so it is reducing the gap quite a lot. It wont be a cure and it remains to be seen how much better I will feel on it, but hopefully it will reduce the symptoms. If not there are other meds to try. I've arranged to see her after the TTT but I can call and make an urgent appt if I get problems in the mean time. Which sounds like a reasonable plan.

if it is POTS (and looking at patient support websites I fit it absolutely to a T and actually looking back have done for years, but just not as severely - a friend reminded me of when I visited her and went really faint ), it is a bugger of a diagnosis because all you can do is manage it and hope that one day it goes away but it isnt life shortening.

So, I think I feel sort of positive if it is the correct diagnosis, it would be nice if I could just be fixed but I already have one chronic illness to manage, I'll just have to work out how to manage this one too.