MRA tomorrow

[Karen]

Well. tomorrow is the day when I'm in hospital for my MRA. Not looking forward to going into the MRI Scanner again. Is it something that anybody ever gets used to? This will be my 4th time and I still liken it to being stuffed into the inside of a toilet roll tube. I shall try to keep my eyes shut as I'm going in, but I bet that I will have to take a peak........wish they would blindfold me as well as putting in ear plugs! I'm not normally claustrophobic but find it hard to relax.......especially when they hand you the panic button and then walk out of the room. Oh well, watch this space! (May be I'm just a whimp!)

They will be scanning for any new aneurysms and the possibility of a re-bleed from the coiling that I had carried out last year. Lots of mixed emotions tonight and finding it hard to sleep.

I want them to find out what's been kicking off with my head again, but really hate the thought of another hospital stay. Beginning to wonder whether having the aneurysm clipped would have been a better option long term, even though the procedure is riskier.

A bit fed up with it all though and too much time to think about it. Still, hopeful that they might give me some peace of mind either way. Just want some of my life back!!

Will let you know how it goes!

Love Karen x

[Annie]

I'm right there with you, Girl! Mind the docs and get a clean peek at what's up. Be good and be hopeful.

Love,

Annie

[Karen]

Hi Annie,

Firstly, I hope that you are keeping well, (before I get too wrapped up with my own problems!)

My scan was carried out this morning. I'm feeling really fed up, abandoned and let down by the health service in ths country. I'm sure that I can't be the only person to have experienced problems and it just makes me so mad!

Well here goes! At first I didn't think that the local hospital were even going to carry out the scan, because of the metal coils in my head. My coiling was carried out in a Neuro specialist hospital about 20 miles away, therefore I'm dealing with two hospitals that in an age of new technology etc., can't seem to be able to communicate with each other, or want to take any responsibility with my aftercare. I'm trying not to get frustrated, but jeez......it's so hard!

Considering that the hospital where I was scanned today, is the same hospital that I was admitted to last week, you would think that they would be able to get it right? May be I'm asking too much? After ringing the hospital where I had surgery, they agreed that I could be scanned.

Anyway, finally I had the scan, but they didn't give me the MRA (where they inject dye into the arteries) but only a MRI. By this point, I had totally forgotten about the dye. I put it down to my short term memory being kapput also.

I asked them when I would get the results and they told me in two weeks time. At this point, I was feeling so dizzy and rough after being in the scanner for half an hour, (couldn't even sit up for a couple of minutes) that I really couldn't be bothered or have the energy to say any more. Just felt totally miserable and let down.

I decided to ring my GP at my local surgery and see if he can do anything to speed up the hospital scan results. Anyway, he's going to give them a call tomorrow.......................I'm not betting my last dollar on getting any results, but hey, I still live in hope. (Would like to think that I'm a "half glass full" person and not "half glass empty") I hate to think that my experience with SAH is going to make me any different as a person.

I will keep you posted!

Love Karen x

[Annie]

Dear Karen,

I am so sorry to read of your frustrations with the hospitals. That should be the least of your worries!!! We learned, too, that you really have to look out for YOURSELF with these folks, and that the squeaky wheel gets the grease.

I don't know about MRA versus MRI. Is the MRA an angiogram? That's when I had the dye twice. I wonder which one they will do for you and why. Which is more thorough, do you know? Probably both thorough in different ways.

Is your hubby with you through all of this confusion and trouble? It always sounds like you're having to do this by yourself. At any rate, I'm thinking of you today and hoping they really nail the problem this time.

Annie

[Karen]

Hi to all,

Just had the results of my MRI.....They are negative, which is great news, but still wondering why I was experiencing what I did?? Would have been a little more reassured if I they had given me a MRA, as scheduled, but just going to get on with things and will put it all down to another "blip"in my recovery.

My daughter is 16 on Friday, so she's having a little party with friends. Have busied myself with decorating and cleaning the summerhouse + barbecue in anticipation of Friday night. Just hope that the neighbours will be talking me to me the next day! Still, you only live once and I'm just so glad to be able to enjoy the experience!!.

Take care all,

Love Karen x

[Karen]

Hi Annie,

Eric has been with me throughout my scan etc. The MRA (MR angio)shows up the arteries a lot clearer than just being scanned in the MRI machine. Still, I will stick to my 'gut feeling" that something wasn't right last week. I have been right in the past with my instincts and I don't want to start doubting myself. I'm afraid that if I do and if it happens again I won't listen to what my body is telling me. In the past I have had a tendency to listen to what the medics tell me and take it as read and it's been to my own detriment.

I think that's probably one valuable lesson that I've learnt and that's to trust and listen to what your body is telling you. I just don't want to take the risk of putting my trust in anybody else, as twice now, they haven't been right. I wish that I could, but I just can't.

I will just have to see how I progress in the next few weeks and if I don't feel as though I'm improving, then I will go back to my Doctor. Nobody seems to be able to give me any answers as to how I shoud be feeling. I know that my eye still gives me quite a bit of pain, but again I can't get any answers from anybody as to "is this normal". It's pretty frustrating, as I'm nearly 14 months on from the SAH.

I still try to remain as positive as I can be, but it's the mental side as well as the physical side of stuff that you have to deal with. Just hope that somebody keeps looking out for me!

Thanks for your good wishes though and they really do help me.

Take care,

Love Karen x

[Annie]

First of all, I guess I should say congratulations that your MRI was negative. And yet, I understand that it probably doesn't feel like completely good news. It sure would be easier if there was a clear cut diagnosis.

Just be careful not to overdo in the meantime, ok? You've done enough cleaning and decorating for a while.

I know what you mean, too, about the information out there being sooo vague about what's "normal". That's why we have this chat line. It's a great thing you've done, setting this up, Karen. I think you are wise to listen to your instincts. I can see why you hesitate to trust the "ok" you get from the pros. Your plan is a good one. Keep monitoring how you're feeling and go back and make a fuss if you're not convinced you're getting better. Your recovery, while much much more involved than mine is probaby still like mine was in that it's 2 steps forward, one step back. Hang in there. You're doing great. Pay attention to the things you CAN control, like rest, and nutrition.

Love,

Annie

[AndyH]

Hi Karen,

Just to follow on from Annie. I am so pleased that so far the results are neg!

I also feel let down by the aftercare and support from the NHS. We have an OT that I wouldnt trust to organise a p*** up in a brewery and fails to communicate aanything in either direction. I am sick to the back teeth of being told 'we will have to see' when I ask about timescales. I am tired of the buck being passed and having to do everything myself. I am working full time, looking after H, looking after my lad, doing the housework, arranging therapists and psychiatrists and psychologists and hospital appts etc, liasing with Heathers work and so on.

It is the most frustrating thing I have ever been involved in. My role of husband and father has been flipped completely and is coming to be resented by myself and Heather. I have to provide 24 hour care and balance everything else along with that!

I have asked for support from various avenues and they tell me that Heather is not elegible for anything.

The bureaucracy involved in getting anything means that anything offered is too ****** late!

Still such is my lot. I still have my wife and son. So I shall continue doing what I was put here for and I shall continue doing it with a smile (as best I can anyway).

XXX

Andy

[Karen]

Hi Annie and Andy,

Thanks for your replies. I'm still feeling a bit numb, let down and frustrated by my hospital experience. I can't believe Andy, that you are unable to get any help at all with looking after Heather and Louis. I can well imagine your frustration over it all. I remember when I first came out of hospital having to fill in forms for incapacity benefit. What a farce that was.....It took them 3 months to decide that I wasn't entitled to it.....I have never seen so much red tape and bungling. It seems that some people are able to milk the system, left, right and centre and the people that genuinely need help aren't offered a bean.

A good friend of mine has a disabled son, who's now 16. He has severe learning difficulties and physical problems. He also has seizures, which are hard to control. She's had to fight all of his 16 years, just to get the minimum of help with him. She never complains and I really don't know how she's coped with all the problems....nothing has come easy to her and as a carer, she still doesn't get the help that she shoud have. In my eyes she's a Saint and deserves so much better.

Do your friends or family help you out? You sound as though you could really do with a break?

Annie, thanks for your support and I am learning to take more rests throughout the day. I am getting more concerned that I'm feeling so fed up. I can't seem to find the "spark" that normally re-ignites me after a bad couple of weeks. If I continue like this, then I will definetly have to get some help with these feelings.

Love to you both,

Karen x

[andyp]

Well Karen I am not sure what is worse being stuck in the toilet tube or staying at the hotel in the red light area of Bournemouth like poor Alison did!

I say that I should listen to my body..but I am not always good at taking my own advice.

I guess it still leaves a question mark for you and i am not sure what to advise you.

Maybe it was just some freakish thing.

Are you feeling any better now? less tired etc.

Hope your daughter's party goes ok..tomorrow isn't it?

Andy P

[Karen]

Hi Andy P,

Great to see you on the board! Yes, I've had a better day.........it was a little hard to drag myself out from under the quilt this morning, but managed to give myself a kick up the backside. I managed to achieve quite a bit today and it's lifted my mood. I'm feeling physically better, less tired, but it's knocked my confidence again. Still, I suppose with time it will improve. Just wish that I could get at least 3 months of improvement under my belt, before anything else crops up.

Lauren's birthday barbie is tomorrow, so have had the pleasure of cleaning out the barbecue. Everybody here loves barbecues but nobody ever cleans the damned thing out! Spent the afternoon sorting stuff out for her party and blowing up balloons. I can't believe that she will be 16, time flies.

Anyway, glad that you've joined us!

Karen x

[Annie]

Hi folks!

Andy, I'm wondering... is there a nearby church that you could appeal to for some help with errands and things like that?

Lauren.... Happy BD!!!

Karen, Sounds like the national health care that we are all longing for over here can be a redtape nightmare. But at least you have coverage and your insurance premiums probably aren't as insane as ours. There are so many people here with no coverage at all. They end up sitting in the emergency waiting room forever just for the simplest medical help. Or just going without. It's shameful.

That aside, I'm glad you're done with balloons and can rest again. Though it sounds like you enjoy Lauren's shindigs as much as the kids too.

Also, thought you might be interested in knowing that the most recent book I illustrated was written by a lady that lives near Dover. Anywhere near you, Karen or Andy?

xo,

Annie

[Karen]

Hi Annie,

Dover is about a 3 hour drive from where we live, it's a small world really, isn't it? Your work sounds lovely......You should let us know the titles of any books that you've illustrated, so that we can take a peak at you work!! I would have loved to do what you're doing, I'm so envious of your talent!

You are very right about us being lucky that we have a National Health Service in the UK. We do have the habit of knocking it, but it's certainly better than having nothing at all.

Lauren's party went very well. A bit too noisy for my liking, (and probably the neighbours) not sure why teenagers today have to speak so loudly. It's almost theatrical when you're listening to them. I think that the boys were worse than the girls, but a good time was had by all, however I was very glad to see them all go home! Hence, my tiredness today....

Eric is off to Scotland tomorrow, working away, until Wednesday. I still don't like it when he goes away. I suppose it's going to take a while to re-build my confidence again after this last bout of illness.

Anyway, you take care of yourself Annie,

Love Karen x