Support thread for those awaiting medical appts,tests and surgery

[ohyouBadBadkitten]

It seems that there is probably rather a lot of us who are impatiently waiting to see consultants, have tests or waiting for surgery. So a thread for you to vent in or post your 'hooray's'

me. Am waiting to see my cardiologist. been a bit of a catalogue of delays and getting lost in the system. I have a wonderfully supportive gp who has just calmed me down after me losing the plot a bit when I found I wasnt on the appt system.

How about you?

I've just spoken to the fatigue consultant's secretary. It's a 14 week waiting list, though they'll put me on the list of those able to come in at short notice for cancellations.

I do need, though, a short-term solution. I've booked to talk to the GP tomorrow about the Prozac... anyone else have any ideas?

thats a long time. You may find though that with the summer holidays looming that cancellations come up.

What about CoQ10? You'd need to watch your blood pressure on that though as it can lower it.

in fact, I'd def talk to your gp about that one before you try it as it seems to be used for lots of heart health stuff.

hello. can I join? I don't have serious conditions as many on here do, and this is a full thread but I am in a limbo space right now and have been diagnosed with kidney fusion/horseshoe kidney via an MRI for lumbar disc problem! which is also still not fully dealt with. I just find I feel out of the loop, no-one really knows what is wrong/going on/what can be done and I feel unclear if the back/kidneys are connected/have they seen something? if so what? I have been told GP will arrange an ultrasound (osteo told me about the kidney on the phone late one evening this week) to see what if anything is happening in there.

But other than that in the dark and no-one has a clue what a horseshoe kidney is!

Hi Pavlov... how worrying for you. Welcome!

If it's any consolation, I received my diagnosis late one evening over the phone too. But as I'm sure you'll realise from reading this thread, most people find a diagnosis takes time to cope with... and most of the time, everyone does cope.

I hope you can get the answers you need. Are your disc problems causing you a lot of pain? There's some discussion on here on managing pain, which I've found quite useful.

breastmilk thank you for welcoming me! yes, had disc pain sporadically for a couple of years, and at christmas my back 'went' properly and I have not fully recovered since. I find I have low back pain and sciatic pain all the time, the degree of pain is more sometimes and less some times, but it is not ever gone completely any more, but neither has it gone so badly I cannot get up from sitting, or stand straight again. I have had acupuncture which did not work, and a steroid injection which lasted for only a short time (2 weeks). MRI was to determine whether there was nerve entrapment. MRI confirmed 'several disc bulges' but the osteo skirted right over this to focus on the incidental find of this fused kidney thing. He asked me a lot of questions before telling me and the intensity of his asking was enough to have me a little concerned before he said anything. He was expecting my answers to be different (think he had found the answer to my intense pain, but my answers suggested otherwise!). He mentioned urine backing up into the kidneys, but I cannot/did not understand if he meant this was happening, or if this could happen. His manner indicated he expected my responses to indicate something.

So, because of this kidney stuff, the disc stuff has been minimised, although I have an osteo appt to explore next steps (with his colleague, he is the 'boss'). And now, as he has suggested the pain might, or might not be linked, but also that I do have disc bulges (he did not say they had ruptured as we thought, is a bulge the same? different? i dont know any more), so now, as I feel pain, i am thinking, it is because of something more serious?

I also think my back pain is not just disc related. The bulk of the pain is in my sacrum area, and I get pain and numbness around my buttocks/coccyx area with sciatic pain in both legs.

I did not ask lots of questions I think I should have. ie how long til i hear from someone! do i call now and chase (spoke to him on monday evening). Does the late night call mean its something serious? DH said it was probably that he did not want to call me at work or at kids tea time. And that referral for ultrasound is via gp so cant be serious.

I am worried, but not sure why. and I am annoyed my back issue is still not any further forward. And it seems I am just going to have to live with back pain. It makes me so sad.

Its all mixed up right now. Sorry to go on.

but neither has it gone so badly I cannot get up from sitting, or stand straight again since christmas. At christmas I could not straighten, I propped myself up at the kitchen table bent over with wine in my hand

What a confusing and unexpected thing to find out Pavlov (welcome :) ) Its not surprising you didnt ask more questions, I bet you were flummoxed. I think its important to steer the osteo back to your back! Your gp will need to refer you to a renal consultant.
Dont read too much into his late evening call. I bet he had a busy day with patients and called you at the end of his day.

Hi Pavlov
I think that most of us here have walked out of an appointment with a specialist and thought Why didn't I ask about this, or when the consultant said That, it made total sense at the time, but actually now it doesn't and what was s/he on about?

Have you got a nice GP? I find that my GP is really good at deciphering consultant-speak, so if I were you, I would book an appointment just to chat about what you have written here. Your GP will be able to explain about what a horseshoe kidney is, and why the additional tests have been ordered, even if s/he cannot yet say what is, or might be, wrong.

The biggest problem that my GP has when I ask questions is that one of my consultants is not a great letter writer, so she has to dissect and explain what was said from my half remembered conversations.

Remember that the NHS is fantastic, but can be a lumbering, slow moving machine, so you will need bucket loads of patience.

OYBBK and madsometimes thank you, just those simple posts have helped me think about what to do now, and that this confusion is normal. Osteo did not really know very much, he said about the gp doing ultrasound referral, and I said 'shall i call him to chase that' and he said 'no no no, I will call him myself'.

All the stuff I have ready (bad at leaving the Web alone!) suggests it is either Something or Nothing at All, and I am thinking i am mid thirties and no problems so far, so its probably purely nothing other than abnormal growth. But then I think back to my childhood onwards and my shit bladder and had a couple of UTIs (I think) and then wonder, has this always been here? I have twinges here and there in my abdomen region, have had for as long as I can remember and you know I just always ignore it, put it down to normal life aches and pains, have a good pain threshold and now thinking, are these twinges, pains were actually something that I should have not ignored. But, the rational side says, what it is it is, there is nothing I can do to change what is, and i just got to go with the system for now and wait it out, it was not known about on sunday, and nothing specfic has changed now, other than I now know something about my make up that I did not know before. And that typically I still dont know if my back is gonna be screwed forever.

thanks for allowing me to let of steam. Unfortunately the one person I would normally call, her son has renal reflux, kidney disease, and all the worst scenarios I could experience with this kidney issue but am not, well her son is, and I dont feel I can talk to her about my own fears until I know if this is something or not, as those fears are so real for her and her son.

Evening ladies.

BM - 14 weeks!! Oh how slow the NHS is. The frustrating thing is that so much time is wasted waiting for letters to be dictated, then typed, then sent, received, stamped and logged, put in a pile waiting for action! And of course if any of the admin staff dare to have any holiday during this time there is no one covering so that just adds to delays. I do think the NHS is great really honest!! Good that you might be able to get a cancellation though. Good idea to chat to GP about things. This might seem silly but are you able to do any gentle exercise. I find sometimes I feel more energetic when I start exercising. I think that is the basis behind graduated exercise programmes, where you start really gently and build very slowly on that. I am itching to get back to doing a bit of swimming but haven't quite managed it yet!

OYBBK - hope you are feeling ok today and are going easy on yourself.

Pavlov - welcome. I would have worried if I heard in the evening but the reality I'm sure is that there was no time to call you earlier as he was busy. Try (I know it's hard) to keep positive. Your GP should be your first port of call, to talk it through, explain your worries, translate what other professionals have said, chase appointments etc... He/she may have an idea of how long it will take to get a scan. Sometimes these can be quite quick. Where I live it is sometimes quicker to have investigations in the hospital slightly further away than the main one and my GP has certainly rung to check before booking. I know exactly how you feel about discovering you have something that has always been there for years ( I had a hole in my heart discovered in Feb this year). It shoudn't make you feel any different but it does and you look back on lots of things and wonder if they were related. Truth is, certainly in my case, I will most likely never know so I have now (and it took a while) focused on dealing with the present issue.

Hi to everyone else I haven't mentioned. Hope you are all ok.

ginger From my experience, 14 weeks is going to be rather quicker than what I'm used to! Until the 18 week target came in, I'd never waited less than about six or eight months for anything. And since the target came in, well... it's usually been around 17 1/2 weeks. I agree with you, though: really investing in the undervalued and underpaid NHS admin could achieve a lot. Getting married and acquiring a difficult-to-spell 'ethnic' surname has been quite an eye-opener in how fragile the systems can be...

I'm just back from the GP. To my very great surprise, she agreed that Prozac was worth a try. But I was somewhat economical with the truth on the psychometric questionnaire which the computer system required me to complete. And I probably destroyed their neat binary data entry system by annotating several answers to explain that whereas in the last two weeks I have felt a wee bit down, I always do for the duration of the fortnight following each hospital appointment.

But yes, I have Prozac.

How's everyone else? We haven't heard from BackPack or Reeny for a bit...?

Well done BM :) I hope it goes ok. When are you taking your first dose?

I hope backpack and reeny are doing ok.

Bit better emotionally but this going faint thing is getting bloody annoying. Was in town yesterday and very nearly had to ask the nice chap in Holland and Barrett for a chair to sit down on. Had to suddenly sit down at work too - I'm going to have to talk to them about modifying my duties as its not great for the childrens safety really. A real dilemma as I've no idea when i'll learn whether my contract will be renewed or not, so I dont want to appear that I cant do the work.

Tough one. I mean, we all know that it'd be utterly and thoroughly illegal for them to decide not to renew your contract on the basis of you needing the 'reasonable adjustments' to which the law says we're entitled... and then, there's real life, which is never so straightforward! But from reading some of the employment board discussions on here, needing to sit down should really not be a major request. Ideally, I'm guessing that you'd rather hold off asking until you've got a renewed contract in your hands... but if you don't know when that will be. I've got a few friends working in schools in the same position.

I've had the near-fainting quite a lot in the past, too, and have had to ask kind people in Tesco and Boots for chairs before. One thing I have found to help on a temporary basis is a good swig of water and a quick munch on something chocolatey sweet... whether it's hydration/blood sugar or purely placebo I don't know, but until surgery I always had a water bottle and a few nibbles in my bag. Did the EP have any suggestions?

(I'm still staring at the packet. Obviously nothing sudden or untoward is going to happen when I swallow my first tablet, but still...)

I'm going round permanently with a bottle of water. Im very well hydrated Good idea on the sweets though. EP suggested lots of water and salt and ermmm... compression stockings. nice. Not sure whether that would completely cut off the circulation to my feet1 I need to get some and see I think - going to ask in boots to see if they stock them. I suspect I need to get them on prescription from the gp, which'll mean an appt. Will have to do that after half term.

Is it a good day to start them? Do you have a relatively easy weekend in case it takes a few days to get used to them?
Remember, if you really hate them, you arent committed to them for life It will be just a case of giving it a go and see whether the overall effect is positive or not.

Hi, everyone, I got a date for my surgery yesterday, I am having sinus reconstruction and a removal of a tooth root from my gum. I'm been diagnosed this week with facial neuralgia too, but I'm not comfortable with this diagnosis as I think it may be linked to the sinus problem. I am on antibiotics and Tegretol which are making me really tired and spaced out and the oral specialist at the hospital doesn't think I should be on them! My date is 7th August so got ages to wait yet I am in a lot of pain with the other side of my face too feels like bad toothache but no-one can find what the problem is sinus or teeth or nerves in face. I'm in a terrible state.
Does anyone else spend hours googling symptoms and trying to find cures/solutions or something to make them feel better?

mumface oh that sounds awful, and thats a long time to wait for op, but thats probably the normal time on nhs? I don't know. And yes to googling for cures/suggestions for feeling better. I do it ALL the time for my back, hoping to find that miracle website. People always say 'don't google' but I am not doing it due to morbid fascination or to read the worse situations, but to read that weird and wonderful thing that I have not yet tried, or that person that said 'after trying xyz i woke up to find my back felt like it did 3 years ago' rather the constant info that tells me that there is no cure and I have probably reached the end of the line with medical intervention for my back problem and this is as good as it will get.

oybbk i am apparantly meant to drink more water than most and I have an aversion to drinking the stuff! I mean I actually struggle with some mental block, which is very ironic given my newfound kidney issues.

Does anyone ever feel that doctors etc just don't take anything serious and fob you off with the easiest, quickest diagnosis and intervention? I feel like I am never going to get anywhere and I am never going to get better with my back and that my kidney diagnose is not a big deal. Well, maybe it is not a big deal to the health professionals who have seen it all before, but its a big deal to me, and I want to know more and there is just no bloody rush. like with my MRI, 4 back episodes over 2 years and since xmas properly pushing to get an agreement for MRI. and now, back to square one [sigh].

I spoke to my GP on the phone yesterday. He has not heard anything from the osteo, and said 'that surgery is slow in passing information' he said they would write to him, but have not done so yet. I told him the osteo said I need an ultr-sound and he ummed and arred' 'yes, well, i suppose I could start the process now, it is likely you will need one just to check it all out, so i could get on it while waiting, but...well, you had a blood test in Jul (last year!!!) and your kidney function was normal, so, well, thats good, so er, yes, I will wait until i get the letter and MRI results from Dr xxx and then I will see if you need an ultrasound, so, give me a call in 2-3 weeks if you have not heard from me'. 2-3 weeks? if i need an ultrasound?

I mean, its good that my last kidney function test was normal, and its good that he said it is actually common for people to have only one kidney or fused kidneys or double valves, but it is also common for those people to have kidney problems as a result! And yes, by the sounds of it the likelihood is that my kidneys are working fine, and I am one of the very lucky ones. BUT I WANT TO KNOW EITHER WAY!

Anyone would think I have just been told some trivial information that is completely irrelevant to anything.

And this GP was exactly the same about my back. 'well, yes, it seems you might have a prolapsed disc, but it might be a ligament, and well, the best thing is to give you more meds [is there nothing else we can do?] well, you could have an MRI, but, well that won't change the course of treatment so no point knowing either way really, so, i might refer you for one, but, well, you could go to the pain clinic...' and on he bloody goes and I end up going to see the osteo and end up being referred for an MRI months later.

Patience? you are very right.

Sorry for the rant, again. I am so down about it all. I am fed up with constant nagging back pain, and constantly having to say 'dh can you...' 'why cant you' because my back hurts

I know how you feel Pavlov with having to ask people to do stuff because of the constant pain and not being able to think of much else, it is exhausting being in constant pain isn't it. Then when you have some respite from the pain you are worrying about when it will come back. It does seem like doctors and in my experience dentist like to pass on the buck to each other and be shifted around departments. Sometimes I wish I could afford private healthcare or be so rich I could immediately book any treatment or test. I feel like everyones sick of hearing about my problem too, that's why I turned to mumsnet. I am a single parent with 3 young boys and I hate them seeing me like this constantly crying and unable to interact the way I want to with them.

Hi mumface, and welcome

Yes, the slowness of the NHS can be totally infuriating, especially when it involves pain and uncertainty in the waiting and especially when we worrying about burdening others... I think we've all been there. It especially annoys me when people accuse parents of young children of being entitled in their attitudes... but when you're the one looking after them, especially as a single parent, how are you meant to cope?

I suppose one way around it all would be some form of insurance-based system in which we could get the tests and the treatment we needed quickly... but at a price. Looking at the US, the NHS is probably the least worst system out there, so to speak. But what I think would help would be some sort of system within the NHS to help patients to cope with the waiting. Some GPs do this anyway - mine will always let me make an appointment to whine about fatigue/pain/anxiety/etc whilst waiting for tests or surgery - but they do so on an ad-hoc basis, and it isn't really the job they're trained for. I think that ideally, there needs to be some sort of 'waiting list support service', offering a bit of emotional support, pain management, advice on employment rights/childcare/benefits, lifestyle support for those needing to lose weight/stop smoking etc to help their illnesses and a crisis line for those who simply cannot take any more . Oh, and proper coffee.

Argh just opened letter from fatigue consultant with appointment date in August.

It says that the appointment will involve an ECG. I know I've only had at least 20 of them and much more in the past few months, but I nevertheless find having to lie down and remove my shirt so intolerably stressful.

I know I asked for this appointment, but I'm now considering cancelling it.

BM
You will not cancel this appointment.

It's OK... I won't. I know IABVVU. Just having a knee-jerk 'oh shit' and feeeeeeeeling like cancelling it panic reaction. I'll wear a nice bra.

Enjoy your lunch.

Waiting 2-3 months is not nice, especially if you are in a lot of pain. I'm sorry Mumface that you are being passed between doctors and dentists. I haven't personally experienced being passed between different specialities, but it must be very frustrating. It does sound remarkably similar to Pavlov's experience with her back and kidneys.

Pavolv, your post about your GP made me smile. He does sound very nice, but not the most spontaneous decision maker. No doubt GPs are under pressure from health authorities not to order too many tests or make too many referrals. In my experience, it takes about three weeks for a consultant's letter to arrive at a GP. Often consultants send copies of their letters to me now, which is nice because it can help make sense of appointments.

I was immensely tired last night, for no particular reason. I struggled to stay awake until 9 pm, and then collapsed into bed. Not sure why, I'm still quite tired today, but am off to my exercise class. Maybe that will help me find my mojo .

Slippers, you are in my thoughts after your colonoscopy yesterday. If you are needing it, then here's a very unmumsnet (((((hug))))).

I'm having a good day so far, pain is mild and managed and have spent most of day chilling on here and lying in bed (with my 2 year old climbing around me and sticking various toys in my face) if I can keep my head still for long enough I'll feel ok. Got school run coming up soon and getting scared it will mess everything up, it's between 4-7pm when the awful toothache pain has hit every night this week. I'm going to be prepared, take co-codamol and Ibuprofen and lay really still with an ice pack on my cheek. If there were something wrong with my teeth surely I would be in agony with them all day. I'll set the kids up with a drink and snack ready and they will put a DVD or game on. I feel so guilty but at the end of the day they need a functioning mum. If I can get through it I will be well enough to do the dinner and bedtime thing. How is everyone else's problems today?