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...

I'm home now... I managed to ring a taxi from the cubicle, so I suppose these phones have their uses. Was just at the GPs. I haven't yet even got as far as hospitalthatterrifiesme and already I'm into the getting-stuck-in-toilets-hyperventilating. I don't even really know what set me off this time. I was just there to discuss the transfer with the new GP - she'd got a few basic details on the referral letter wrong - and learned that even more of my notes from Previous Consultant than I'd realised had gone astray (well, all of them have gone astray... everything, everything from the past YEAR) and I just felt as though the GP just wasn't grasping how I'm feeling, and I felt as though I'd lost the cpacity to explain myself, and then I took a deep empowered breath and began to explain everything but she asked me to leave citing time constraints just as I was about to suceed in explaining... and then as I was on the way out she told me that if I want to keep taking Prozac I'll have to see her every month and I tried to explain that I wouldn't necessarily always be able to mange that and she told me very firmly that my time was up and I'd have to leave.

Sorry about the brain dump. I fancy a bacon sandwich before my staunchy vegetarian family all get back...

So everything from the past year has vanished, including all details about your surgery?

That's really c.r.a.p.

I'm so glad that you are not going back to the other hospital. Really sorry that the GP wasn't in a listening mood, that's pretty rubbish too. I don't know about needing to go back every month for a repeat prescription for Prozac. Maybe she's just being thorough?

Yes, even the details of the surgery have gone missing... strange, because they sent me a copy. So the GP has asked me to photocopy her a copy of them. Shall I charge the practice the same rate that they'd charge me if I was requesting them to photocopy medical notes for me?

As for the Prozac policy... well, there are online pharmacies with fewer scruples...

Hi BM,
That's really bad about losing your notes.
Hehe...yes you should charge them lol ;-)
How frustrating!
I've had similar things, and a couple of my friends too, either as an inpatient or outpatient and they've lost the notes.

The positive smiley me, is not so much today. Just can't keep it up at the moment. When I can't hide behind being positive and overly smiley, I push people away and don't let them see me :-(

Reeny, sorry you are having a rough time lately. The fact that you are normally positive and smiley is a testament to how strong you are.

Just back from the hospital for dd1's routine checkup. She's being referred out of general paediatric cardiology to a connective tissue clinic at a teaching hospital. I think it may be a paediatric clinic, but not entirely sure. She's doing really well - apart from mild MVP her heart is normal which is great, but she didn't enjoy today. She said that she felt like a piece of meat . In fairness, the doctor did address all his questions to her, but she froze up, so I had to answer them. There was a very nice nurse who put her at ease, and held her hand during the test. People like that make all the difference.

Although she's doing well and is perfectly healthy, I'm feeling a bit guilty and rubbish this evening.

Sorry to jump in here without having yet acknowledged reeny or teamGB's comments.

But again, I'm just having real difficulty in coping right now.

This morning, I took the DCs to our favourite art gallery to see a new exhibition aimed at littlies. It really was fantastic, but there was something almost inconsequential in one of the pieces that triggered a sudden panic attack... I started shaking and several members of the public tried to ask me if I was OK, and when I couldn't answer them, they called the duty manager to come and speak to me. The duty manager was very kind... but well, I think I'll let DH do trips to this particular gallery in future...

...and then I got home. One of the lost hospital letters was on the doormat, the lost summary of my mid-May follow-up from the surgery. And as I had slightly suspected (because his manner had appeared somewhat cagey), there had been quite a bit that the (soon-to-be-ex) consultant had omitted to tell me, perhaps because I'd taken BFF rather than DH even though I'd been aware this consultant has only ever really been comfortable talking to DH. Essentially, I DID have fairly quite serious complications from the surgery which have now resolved. But I know that even the eight weeks during which I experienced those complications could have sufficient impact to raise my risk of developing heart failure. And sorry to shout and swear but why the fuck did nobody tell me ? ?

And alone in the house here (DH is at a very important family gathering with the DCs, and it's not, not fair to drag him home) I just don't know what to do with myself.

I rang the new GP yesterday to ask for help with my anxiety and she said very firmly that there was nothing she could do unless I became suicidal and needed sectioning and that I was making her whole surgery run late. She's off now until next Wednesday, and the whole practice is closed until Tuesday... and in any case, the GP practice do not have my notes, because my notes are missing.

I know that the hospital where the consultant is based won't help; their policy is that only the consultant himself is able to respond to or comment upon any queries, and I know that the consultant himself is currently on leave until next Wednesday too.

I know that I could phone a friend who's a GP who would help me by explaining this in general terms... but really, without my notes, she could do little more than I could find out for myself from google PubMed. Similarly, I've tried the British Heart Foundation in the past, and haven't been able to give them sufficient information for them to explain it to me. And I'm guessing Out of Hours wouldn't be able to do anything without my notes either.

So what can I do today? Is there anywhere I could go for help?

I'll try and re-post this on chat, where more people might be reading...

It's a good idea to post in chat, because you do get a variety of inputs from both HCP's and people who have been through the system.

My personal view is that at the moment - today - you do nothing. You are very upset and now is not the time to be doing things. As you say, it is a bank holiday weekend, so no one who hears complaints is at work.

I know you are shaking with anger, and I remember well the 8 weeks when you were unwell. You thought that not only was your career over, but also your husband's, because you feared needing 24 h care. I have no idea why your consultant didn't explain your complications during your post op appointment. Surgery is risky, complications happen, but as a patient it is your right to know about them, and what you need to look out for. Did he think that you would go ballistic, and so decided to shelter you from the reality that you were living .

I know that you have said that younger patients are a bit of a mystery to your consultant. Perhaps older people are less questioning, I don't know?

Please wait until your dh comes home, and run this by him. There is no need to act in anger. Good decisions are not made that way.

You're right that I'm too angry to do anything sensible. Thanks for so politely pointing that out. But I'm not just angry... I'm terrified. Terrified of... let's call a spade a spade... I'm terrified of dying.

bm that awful. I am so sorry this is all so messy for you. And I am so cross on your behalf at your gp. If she did not have time to talk, she should have said 'please can you make another appt, a double appt and we can give this some proper time' next time, make sure you book a double appt so you can say what you need to without being cut off. And if she did not have time to talk to you on the phone, she should have agreed to call you back later when she had time, it is not your fault this has all happened and not your fault she took the call at the expense of her surgery, that was her choice. My gp takes telephone calls but only after 11am at the end of morning surgery.

You really need some people to start being honest about what has happened and what to expect now from them. An you talk to pals? Would they be able to help at all?

BM, I hope that you enjoyed the rest of your bank holiday weekend, and did some nice non-hospitally things with your dh and dc.

I agree with Pavlov that your GP didn't handle your phone call very well, perhaps her inexperience showing? It wasn't her fault that she couldn't speak during a clinic, but she should have called you back later, or asked that you book a double appointment.

I have gone through phases in the past year of seeing my GP very frequently, because things have happened that have scared me or consultants have baffled me with their non-communication. Now, I haven't seen my GP for ages, apart from my coil being put in by another doctor in the practice. Before, I felt like I was demanding patient, I would walk in and say sorry, but it's me again. My very experienced GP (qualified 1970's) would never make me feel bad though, and always listened. You need your GP now, in a few months you will probably not.

Are you going to call your lovely ex-consultant tomorrow or have you had enough? Maybe he would prefer to speak to your dh!

I think I'm past the point of caring who STBXconsultant speaks to.

I rang the GP practice this morning... she can't see me until thursday and can't speak to me until tomorrow. When I pleaded with the receptionist that I'd already been waiting since Saturday, she agreed the senior partner in the practice to phone me... which he did, but to admit that he'd never in 30 years of clinical practice seen a patient with my condition and then to repeat the party line of how, without my notes, there is Nothing Anyone Can Do So Stop Taking Up Such An Excessive Amount Of Our Time Now Breastmilk And Wait For Your Notes To Appear.

I suggested we wait for pigs to fly or the cow to come home. He said that he had a busy surgery and needed to go now, and the Breastmilk just put this out of your mind and relax.

I left a message with PALS a few hours ago. Either they're pursuing STBXconsultant with a machete on my behalf, or they've given up on me too. Answers on a postcard, please.

I'm back in the headspace of thinking that I just can't take any more and want simply to refuse all further treatment, buy my Prozac onbline and wait for nature to take its course.

I've just spoken to PALS. They've agreed to help but have warned me - and quite reasonably, I think - that it might take some time.

But I don't have time.

may i offer anyone a ?

I'm currently pending on two conditions!

I had a LLETZ last week and am waiting on results, and also a long term sufferer of acute psoriasis. they won't treat the psoriasis because I am breastfeeding (and the drugs are truly terrifying) and I can't take the time off work to have light treatment, so i basically moisturise and run outside at the slightest hint of sun!

i don't know which i hate more; an incurable skin condition that covers 90% of my body or the possibility of cancer. I feel like my body is just falling to pieces.

I'm also a very isolated single parent with no family/friends close by and DS' dad isn't even in the same country.

It's so scary sometimes.

sorry! this is very downbeat, but i hope you don't mind me venting.

Welcome TMC :)

I'm another severe psoriasis sufferer, though mine is behaving really well at the moment. My dermatologist is a great advocate of taking advantage of any sun (though I was very when he suggested it one march when the waiting lists for hosp treatment were so long!) I've used home uv lamps in the past, to reasonableish effect but I'm not convinced about their safety. What sort of psoriasis do you have?

I had to look up LLETZ. When will you get the results? It must be scary, especially if youve not got people to off load to, so you have come to the right place :)

I wonder if there is a psoriasis support group nearby to you and whether you would find it beneficial?

Thanks TMC for the , and welcome. I'm glad you're met OYBBK as she's really the one to chat to about psoriasis. But when you say you're breastfeeding and can't take certain medications... are you 110% sure about what you can/can't take? I ask that because I've been BFing for over 2 1/2 years now, and have been surprised by the extent to which pharmacists can often have much more detailed info than doctors and how frequently I've had conflicting advice. I've found the breast/bottle board on here a great signposter to reliable sources - and if you search through the archives, so many questions have already been asked, too.

And then you've had a LLETZ... certainly, the worry sounds overwhelming. Most of us on here have been there with the waiting, even if with waiting for other results related to other conditions. I think medical systems often find it hard to get their heads around younger people with one or more potentially serious conditions, as can friends and family. How old is your DS?

I do have a lot of experience with topical treatments, so I might be able to help with some suggestions :)

I have plaque psoriasis. it's worse on my feet, legs, face and head, but I have it everywhere!

I use diprobase twice a day and calcipotriol on my scalp and dovobet on the rest of my skin. because it's so widespread i can only treat a few areas each time and it's not very effective. sunshine seems to be the only thing that pushes it back,but nothing gets rid of it.

the treatments all involve drastically treating/altering your immune system, so there is just no way it is compatible with breastfeeding. they also severly reduce fertility and can cause skin cancer... nothing there that makes them appealling!

the lletz was horrible, but quick. just sitting about waiting for results and desperate for them not to be bad.

How is your psoriasis OYBBK?

my DS is 18 months, breastmilk. i saw your thread about your heart condition. any more positive updates?

thank you both for making me feel welcome!

Have you tried old fashioned coal tar baths? Also for plaque psoriasis dithranol can be great but only where you can apply it accurately because it can burn normal skin. Not recommended for where your toddler can reach and you need to wear an old layer of clothes, old sheets etc. On your scalp I really recommend cocois left on over night, then wash out with coal tar shampoo in the am. On the face gently does it is the key I've found ,nothing stronger than 1% cortisone.

When mine is very bad it can take between an hour and two hours to treat twice a day. I think that would be very difficult with a toddler by your self and perhaps you really ought to consider puva, if you have a decent employer then they should understand that this is pretty much essential treatment for you.
Is it on your soles and palms?

At the moment I've just a few patches here and there. I think I've got some big patches appearing on my back by the feel, but it doesn't always develop and im a bit scalpy at the moment. I sometimes get guttate, a bugger to treat as its really hard to zap the billions of little patches without irritating normal skin. Other times Ive been almost head to toe plaque, leaving DNA everywhere. could never be a burglar I have psoriatic arthritis with it, that is very good at the moment. I've had psoriasis since I was a kid, it's just part of who I am, someone who is superbly effective at making skin! Th only bit I hate is the leaving bits of myself about the place.

If you ever want to chat about it, pm me.

themysterycat hello. I have no advice i am afraid, but you are clearly in the right place for lots of it! hope your results come back quickly and are as positive as possible. what a scary wait that is.

I have no idea what I have updated and what I have not. But, now I am 'in the system proper like' i seem to be being treated much more seriously now, like, i am actually a person with a very screwed up back, and in a lot of pain. So, crux of it all is, to recap if I have missed, and if not, so as not to bore you all with the details - saw neurosurgeon linked physio, agrees disc could have torn/bulged more, ruled out spinal fusion as only the last resort option, not there yet. Partial discsectomy (sp) is possible if MRI shows what is suspected. However, as pain has subsided, albeit marginally, this guy wants me to do 2 months intense physio (they happen to have been on holiday for two weeks though ) and see how it helps, then MRI. Advised there is no cure, no fix, only pain management, unless we go down discsectomy route. cycle of pain for disc sufferers is 2-3 years at a time, so this is to stay for a while unless they slice a bit off.

So, on reduced hours at work so i can crack on with physio each day (painful) with full support of gp, who was happy to sign me off completely. I told him i need to be at work, going nuts at home with no routine so he has given me a fit note with recommended reduced hours for 1 month initially, will do longer if i want. Discussed pain relief as I am worried about some of my meds/long term side effects, and spoke about my plans for reduction. He is, it seems suitably impressed that I was not going in asking for stronger drugs and time off work! As a result he has offered me slow release tramadol and pregabalin, as like some kind of reward i have chosen not to go on the pregabalin now but he will prescribe on my say so. Had a good chat with him about how things are progressing, finally and he said he will support whatever route i go down, however he is able. Aaaah

my other problem - prolactin levels - they are fine. Have no idea what is causing my symptoms then, a couple of concerns there, but it can wait now. one thing at a time.

Oh. And I think I have shingles

How is everyone else? !

Pavlov, how are you feeling your plan? It sounds positive that you have one but there's also a fair bit to come to terms with. How rottenly stupid of your body to develop shingles though. I really hope it's not that. Not what you need.

BM how are you doing???

I went shopping yesterday with dd and didn't have to sit down at every opportunity :) I def have more stamina than I did and I can move around faster, though I did start to go faint in the end. however, Ive been getting palpitations at night which make it hard to sleep. I tried to ignore them on my hols, but last night as I was watching telly I did my bp and hr a few times as I was getting loads of palpitations. Hr was 44-49 and coming up with the irregular hr symbol. Also getting headaches most days but thats normal when starting the drug. I really really want to ignore it and see if it improves. Seeing my new gp for the first time in a couple of weeks, so I'm going to see if I can muddle through til then.

oddly, i feel more clearer, and more positive now i actually have a plan forming. I think i came to terms with my back being a long term problem once he was honest about it, I have been so down and worried about when/if this is going to sort itself, i have seen no light at the end of the tunnel. Now I know someone is listening, but more than that, i am getting some answers and I can see a light at the end of the tunnel. I now understand, with facts and frank conversation, where this might go, and what role I can play in my future. This physio did not say 'you will get better' or 'this is not a big deal' or 'its normal wear and tear' 'it will pass' and all the other minimising stuff which seemed to be get my blubbing wreck out of their office. This guy said 'you have a serious problem with your disc, it is not going to get better on its own, surgery might not be an option, but you can help to manage the pain, this does not have to disable you. But, you will have to work bloody hard, and not stop working hard, for it to not disable you'. well, now i know that, i will work bloody hard to not let it disable me. (he said it was normal in that it was what they would expect the MRI result to show from someone presenting with my symptoms).

I don't know if i have shingles. I think it is, but i don't feel rough with it and only minor symptoms. If this is shingles, then i have had it before. but did not know it as i only learnt about shingles with the children having chicken pox recently. i mean i have heard of it, but did not really know much about it, or consider previous symptoms as it.

hope you can manage until seeing your gp. what if you cant? will you see the new gp early?

You sound very determined and very capable of dealing with this :) it is really good that you finally have some honest support from the professionals.

If I'm still concerned in a day or so I guess I'll make an appt to see which ever gp I can get, but it's back to work next week (I work in a school) and I'm already having to take time off for appts.

Booked a phone consult with my gp for today as hr was down to 47 again last night. Seems silly to worry about it when I can have a quick chat - just worried that he will want me off it altogether.

Achoo, and welcome TMC. By my reckoning that's three cats on this thread now .

I'm another who had to google what a LLETZ is. Hopefully you will get a nice clear result at your next check-up. Don't worry about venting, that's what we are all here for.

Pavlov, I'm really pleased that finally your problems have been taken seriously, and that you are now seeing someone who tells it straight. I really hope that you can avoid back surgery, because it sounds like it would have a difficult and painful recovery with no guarantee of success.

Kitten - glad you are speaking to your GP about the hr dropping so low. It will be a shame if you have to drop the meds. I hope you enjoyed your holiday, and are fully rested ready for work.

I'm at a crossroads. I think and hope that I'm getting better from my surgery and complications. I'm not sure because I have been feeling tachy sometimes, but I'm going to assume that all is well. I've been a SAHM for 12 years, but now it's my time. I've just enrolled on an access course. It's going to be tough, three days a week, over 2 hours a day commuting. I know it's a bit crazy because I'm 40 next month, but I would like to study optometry. Chances are, I won't because there are lots of challenges to overcome - getting the grades, getting a university to accept an old gimmer like me, childcare, dog care and family life plus my health and stamina. If it doesn't work out, then at least I will have tried. If I take the easy option and do nothing then I will never know. I'm quite scared - I've been up to the college twice in two days, and feel wrecked now.