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...

oops sorry to hear you have to be here, but it is full of very supportive, understanding and knowledgeable MNers.

BB often, re wondering if others think I crave some attention of something. Esp as my new episode of back issues concided nicely with DD breaking her arm (one week later), so I have, on one occasion taken DD to Docs with me to ask about her and me, and since the kids have had chicken pox DD has had a small lump on her neck, not a huge concern but as I have been at the docs anyway, I thought she should just come and I would ask about her wrist (a boy stood on it at school) and the lump. She is fine. And, I have posted lots on MN about all the things going on as its my sanctuary, so I definitely think for sure I am someone that has a constantly traumatic life and wonder if people think I am deliberately being a drama queen/having lots going on to get attention or something, but I am not! we just had bad luck, and bad luck always seems to be bunched in a big pile, and like you don't know why that is, that things all come at once.

Anyway, got to go and start another thread about DDs poorly arm

Mad I have two DDs, DD1 is 11, she has long term gynae problems, a rare condition affects something like 1 in 4,000+ females although many don't know they have it until they are adults (I'm on a thread at the moment where a lady with a DD aged 10 had something similar and she got fobbed off and now this poor girl aged 10 is having an ovary removed). Anyway, DD1 had her MRI a few weeks ago, just sorting out referral to special specialist.

DD2 is 9, she has problems with her back, last year they offered MRI and I said oh no she will be fine ... ahem, 1 year she obviously isn't. I am hoping its just a trapped nerve or disc injury and that rest and physio will help. But she definitely needs the MRI just in case.

Pavlov I do feel like a drama llama. I like that phrase, I don't mind being one. I'd rather be a drama queen than actually really have to face the Myeloma diagnosis, at least it took my mind off it all today. I've been feeling crap as well, don't know if its the mention of the "Big C" word and then I've started to think oooo I must be ill, but I've been struggling to do everyday stuff, like work, or even putting the vacumn round. And I've started sticking to the kitchen floor. You know what that means? Mop time. I hope your DD's arm is better soon and all sorted out.

bb that must be terrifying, waiting to know. I would prefer to be a drama queen and let people think I am fussing about nothing than to leave things that could be something serious. I think, like with DDs arm, if I just fob it off, as nothing, her arm being trod on while broken, if I just ignore her saying it hurt for a while, then it turned out the break took longer to fix/stopped healing and it was more complicated because I left it, how would I feel? and how long does it take to have a gp check it out? and if it happens that I have a bad back at the same time, then, that is just how it is.

DDs cast came off on sunday and her arm is still very sore at the site of the breaks (both ones in the wrist) and her wrist is quite crooked still. The consultant at the fracture clinic said it would likely be a little crooked at first, but as she is 5, it should straighten within 6 months or so, but its quite frightening to see her once perfect arm crooked. I am not convinced. But, that is me being a 'drama llama' as you put it, love that phrase!

and I was going to say, how hard it must be for you to cope with two children who have health problems along with your own health issues. You are a strong woman to keep it together. Even if you have a sticky floor sometimes mine is like that a lot and I don't have any excuse!

Oh Pavlov, I think being confined to bed in agony with a trapped nerve and other lumbar problems gives you ample excuses for a sticky floor too .

Perhaps this should be the thread for those awaiting tests whilst stuck to their own laminate!

ah, but not my DH ;-) he is very good at it! although, he washes kitchen floors a million times a day as a trainee chef (they give all the glam work as a newbie!) so I forgive him for not wanting to do it.

DD is doing good, You wouldn't even know she had an accident unless you saw behind her fringe. She is starting to tell us more about what happened. We were called up to the School on Thursday to be shown the CCTV of the accident.
We were shocked as the TA lied to us She said DD was the only child there and the Climbing Frame was on the soft pour . The CCTV showed 4children all together in the back (they were meant to be at the front doing Sports) The Climbing Frame was on Concrete on a Hill . we are shocked how 4 3/4 year olds managed to escape the teachers for quite a while and no one noticed until after DD and another girl fell and a little boy ran to the teachers to tell them.
We have made a formal complaint about it. The Headteacher is also shocked how careless the Staff had been.

I had my LP done today and it was very high (in the 80's ) . I was supposed to stay in as my sight is effected quite bad as my Optic Disks have Hemorrhages on them again. I explained to the Surgeon why I couldn't stay in and begged him to allow me home as I would prefer to see DD last then a DR/Surgeon, He agreed as long as I phone 999 if I lose my sight and get seen by the eye DR's on Monday. I have been like this quite a few times now, I know my sight is going to go someday so I'm not to scared.

I have put loads of weight on since the start of pregnancy so that could be the reason the pressure is high.

GingerWine I wouldn't dream of letting Natwest do the Lumber Puncture I'm nervous with a Surgeon doing it and he says he does 2-3 per day

Hi to all of the new people :)

I hope everyone is doing OK.

BP firstly at your DD's TA lying! And allowing children to be unsupervised for so long. I think alarm bells rang when you said the TA did not see what happened. I suspect, and rightly so, heads will roll there. It is shoddy and dangerous, but more than that to me would show little regard/care for the children on my watch. you pay to have your children kept safe while you do not care for them. Do you know how you are going to proceed after the formal complaint? do you think this is an isolated individual member of staff issue or a wider nursery issue. Not good. But, on the good side, glad your DD is making a speedy recover and the cut hardly notices. Hope she continues to mend.

secondly at you possibly losing your eyesight in the future. I know you say you accept it, but that must be very hard to have come to terms with. it really makes my moaning and wingeing pale into insignificance. I agree that the last person you want to see is a doc! I hope the pressure eases and you regain some sight again x

Backpack, so sorry that things are bad at the moment. I can totally understand why you didn't want to stay in hospital, and I hope you have a good weekend with dd. All the best for Monday when you see the opthamologist.

BackPack sending all my love. Sorry things are so precarious at the moment. I'll have everything crossed and hoping for you on Monday.

How about we use that for our next thread title? Mine is currently very much in need of destickifying as well. I've just got back from a 'day trip' unexpectedly extended by 72 hours due to the weather, so am currently grateful that the laminate wasn't eaten by the cats...

just a quick post to say hope you all have a good day. I am off to work today wish me luck!

BackPack is it today you have another appointment? And good luck to Pavlov for day in the office!

I'd like some advice please everyone. You know I said upthread people are bit off when I say I am under consultant, DD1 is under another consultant, and DD2 is awaiting an MRI with yet another consultant - obviously I don't go around broadcasting it - but those I do tell apart from one or two close pals seem to think I am mad. I am worried how all this looks to GPs. Firstly, my own GP didn't want me to have any tests at all over this past year - she said its a problem with stomach acid, its because you are fat, lose weight it will go. I said no I don't agree I think its more than that and ended up having to pay privately either myself or through my insurance for everything. She still doesn't seem to take that into account though, and now I am under an NHS rheumatologist, he said he was concerned and ordered a bone scan. Which by the way looks to be negative, his secretary said no news is good news as if positive for caner they ring you within days and its been a week now.

Anyway. Today I received a copy of DD1's referral to the specialist in London, saying that I had insisted on it and that her paediatrician thinks she will "grow out of it". But he gave me DD's results, I passed them to clinic in London, they said it is highly likely she has rare congenital problem and she needs to be seen by an expert. So I think the disagreement is between two consultants, not me and the original consultant, but can you see how it makes me look?

And then there's the business with DD2 not being able to feel her leg and back pain etc., she's been off school for a week, took her to A&E, she got consultant appt for 9th July. Our GP (different one there are 4 at the practice) saw her on Friday when her leg gave way and she fell down stairs and said she needs to be seen by consultant urgently, needs MRI etc. But "D"H is now saying that encouraged by me she is putting it on - ok he accepts she cannot feel her leg but seems to think that is fairly trivial (!) and that pain in back is not as bad as she makes out, should be in school etc.

So am I shaping up to be a looney, or am I simply a victim of coincidence? If got stuck next to me at a dinner party, would you think attention seeking neurotic saddo, or concerned and informed patient and mother?

First of all BB, let's focus on the huge positive that your bone scan is clear of cancer. That is such brilliant news . I know it doesn't tell you what is wrong, but still a big yippee.

As for your dd's, really who cares what other people think? It's none of their business anyway. Dd1 will be assessed by the specialist in London, who will determine if she has a condition that she grow out of, or if it is something which needs on-going treatment or surveillance. You can't know which, and just ignore the paediatric referral comment. If the doctor really thought it unnecessary, he would not have referred. There must have been an element of doubt.

With dd2, you have been given an appointment quite quickly, so the A&E doctor must have been concerned. It is possible to send dd2 into school, even if it is for half days, with painkillers given in the morning and no PE? I think ideally children should have things kept as normal as possible, but not all schools are willing to accommodate children that are not 100%. Has she been off school for long, or is it just today?

Seriously, though, just ignore people that look at you askance.

I honestly don't know whether I think you're overreacting or not, but I agree with mad: why bother with what I think? Why should you care whether I, as a hypothetical dinner party companion you'd probably never even meet again, consider you an attention seeking neurotic saddo, or concerned and informed patient and mother?

The people whose views and feelings you need to consider are your two daughters. Will they in years to come feel aggrieved that you dragged them to endless unnecessary hospital appointments to allay you own ridiculous anxieties... or will they in years to come feel a debt of profound gratitude that you fought so assertively against institutionalised scepticism and cynicism to have their rare and painful medical problems thoroughly assessed and carefully treated to minimise disruption to their lives? If you truly are acting in what you believe to be their best interests (and you have said nothing here to make me doubt that you are) then I think it will be the latter. But honestly, think about them, and just ignore, ignore, ignore other people...

BurningBridges I agree with Mad and BM.

I went to see my Opath and my Obstetrician (sp) today.

My Opath agreed that my sight is at risk at this moment in time. My left eye does not dilate much at all so I had to have the drops in it to Dilate it. My Left eye is has a lot more hemorrhages then my right.

I couldn't even read the top letter of the chart today :( I stand up and my sight goes in my left eye. To protect it from light I need to wear a patch and on it and go back to my Opath next week unless I lose my sight sooner. My Opath believes my left eye is more at risk but the strain will not help my right.
My Opath couldn't say if pregnancy has speeded it up or if it is just one of them things.

I never believed my Surgeon on Friday when he said I will lose my sight. I've heard it so many times I thought he was exaggerating.

To make my day even more worse my Obstetrician is concerned about my Kidneys, She does not know whether my "overuse" (taking the recommended prescribed dosage) of painkillers have contributed to it or other factors in my past. My GP was concerned about my Kidneys in November but never acted on it.

I've had my Scan brought forward (to Thursday) as the DR's involved in my care wants me off the painKillers (paracetamol) to do that my Surgeon needs to operate ASAP so as soon as I'm 12-13 weeks pregnant he will operate. Once that has been done my GP and Obstetrician will check my kidneys by blood tests again, if the results are similar it will be a scan on my Kidneys. I suppose they can't be really concerned as they are leaving me a few weeks before re-testing.

I hope everyone else is doing good :)

I didn't know you had kidney problems as well :(

And the sight loss... well, I'm not surprised you cannot take it in. A huge, huge thing to come to terms with. If this isn't a silly question... how are you managing to use the internet? It seems as though you're so isolated by your illness. I worry about that, especially as things haven't been great with your DP recently...

I still have my sight in my right eye :) its just a bit funny so I need to double and triple read what I'm writing.

I have made the screen bigger so I can see better.

DP and I are doing OK at the moment, he is more concerned about leaving me alone but he has and appointment at the Job Center apparently he needs a job which we would love him to get but doubt he will

I've been referred to Adult Services again to see what support we can get put in place to help.

backpack oh love, I wish I could say something that would be profound and make it all ok. But, in the absence of that [hugs] to you and positive vibes for this being just temporary and that your sight will return at least partly in your left eye. Glad you and DP are getting along ok atm, hope that continues x

work, well, that was hard. I thought it would not be too painful at work as I had no children or housework to think about, but the chair is too hard, the fire doors are too heavy, got up and down a million times on a chair that is not the best for my back despite being a 'back chair' everyone has had a bad back and so they have lots to say about how to fix it, or refer to it as 'i had a back twinge last week too for a day' [grrrr]. I got called a cripple (because of how I was walking) by one colleague who proceeded to attempt to straighten my back for me, demonstrating what a chiropractor would do and my manager who meant very well by insisting on carrying my cup of water to my desk for me, and holding my notes as we walked to our meeting and rushing to get my a cushion, talk to the people who talk to the people about getting the firedoors put on the lightest setting - i feel somewhat silly, embarrassed! Esp as it is very obvious that I have a problem as I am walking slowly, and slightly stooped, lots of sympathetic looks . By the end of the day i was soooo tired and my back hurt and my sciatica was painful. But I made it through, yey!

US this evening. If I can make it. DH is working, and DD has a bug so might not be able to get anyone to look after the kids. Typical.

Hi all, I'm home from my breast operation, it generally went ok.
Had another neckline in, i told them i was difficult but they still stabbed me every where 17 times in my hands, arms, feet, legs!!
My reflux was very bad while I was under general anathestic which ment I had fluid on chest I couldn't clear when I was awake, which had to have physio to tap back and exercise with special breathing apparatus.
Wound started to open and now after some antibiotics it's improved slightly. And on one side the stitches are started to pop out! District nurse been out every day (my mum also a DN but I didn't want to put all pressure on her as she does so much for me now as it is)
I've also had a pre op assessment date through for my spine op (in August) (56 weeks after being put on list!)
Other than that, I have the usually agonising spine pain, and other problems with bladder, stomach, bowels etc,

Hi backpack,
How far along in pregnancy are you now? Have you had a detailed chat with obstetrician at ante natal about possible plans?
It sounds difficult with your eye sight deteriorating. Is there any software you can get / have that can aid you, like to read what it says out to you, and voice recognition, when you speak it types it out?
I know if my M.E. plays up and my hand aching to much, on my iPhone, I can speak and it will write out a text for me.

Hi Pavlov,
Well done you for getting through the day at work although it was very hard for you!
I've had comments before off people about having a 'bad' back, can be frustrating but I try and just nod and say yes I've tried everything, this is life long etc, but thanks anyway.
Do you use an aid when your working? A stick? Crutches? If not, would it help you?

How's everyone else? Breast milk? Ginger? Burning bridges?

I apologise for posting then re posting again. I forget what I've read, so need to go back to page then reply to other person.

I did post a post in the chat forum, saying I'm in Real People magazine on the my works page (by back page) issue 26. It came out last Thursday and I think only in shops til tomorrow now.

Sorry again for multiple post, correcting spelling 'my world' page

Reeny, you must be quite a cheerful person (or had some really really bad stuff) to describe your op as 'generally ok' as it sounds rather grim to me. I hope that it continues to heal ok. I'm glad you've got your preop date finally.

backpack love, I dont know what to say {{{{{hugs}}}} we will keep listening.

burningbridges - all you can do is your best. I think one sensible thing to do though, if your dd isnt back in school yet is to talk to the school and ask them how they can support your dd in being able to access as much education as possible. It will be good for your dd, but also, it will help you if questions are asked.