My latest scan and various muck ups....

[Guest zolabud]

Haven't been here for a little while,but I thought I would share my latest news with you all.

I have had a few fits lately and went to see my new consultant at Hurstwood Park Hospital in Haywards Heath.

He suggested a cerebral angiogram and it was booked for the beginning of January.

I was offered a general anasthetic but as it would mean a night in hospital I said no.

I have had 2 of these over the years without being put out and didn't have a problem.

I checked in at 8.00am,was shown my bed and waited 'til my turn came.

A nurse came in with a syringe and asked to take a blood sample.I said it had already been done by my doctor and didn't she have the results?

I had seen my doctor the week before,explained that I need a sample of blood to determine clotting.I am now needle phobic and require Valium before having any injections.

This was all sorted and I rang my doctor and asked her to pass the results on to Hurstwood Park.She said she would sort it. This was not done,and I gave the nurse the phone number of my doctor and asked her to ring her.

She came back and said that my doctor couldn't find it,but I would probably be ok,and the scan would go ahead as planned.

I asked on a few occasions about my valium.I explained to the consultant I would need something to calm me down beforehand,and I had 10mg of valium waiting.

I was told it would be there soon.10 minutes before I went in I finally got my pill.I know from experience that they need around half an hour to be effective...

Anyway,I went into the theatre and was given an injection in my groin which was unbearably painful.Then he started to thread the tube up to my brain,so that the dye could be injected and photos could be taken.

I felt it go up to my bellybutton and had to ask him to stop,as I could no longer bear the pain.I tried very hard to keep still and just put up with it,but I found it impossible to carry on.The surgeon ripped his gloves off and flounced out of the theatre.I was in tears on the table.The lovely nurses explained that maybe my pain threshold had changed,but not to worry,I could have the same scan with a general anasthetic.

Now beforehand I had a chat with the surgeon,who explained that unfortunately all my notes from 12 years ago had been destroyed.He advised me to make a complaint.

The next day,I went back to try to get in touch with the Patient Liason Officer.

I asked for her to find out why my notes had been destroyed and she said she would look into it.I also saw the nurse from the day before and expressed my concern about the way the surgeon flounced out of the theatre.

She said,'Oh,don't worry about him.They can be quite arrogant,due to the nature of their work.He was cross that the scan hadn't worked.'

I had a call a few days later and the Patient Liason Officer explained that as I had had no treatment for the past 7 years it is hospital policy to destroy notes.

I explained that I have had 4 fits since 1997,all requiring hospitalisation,a stay of a week,lumbar punctues...Surely that is counted as treatment.My last fit being just before Christmas last year.She agreed and said they are looking into it to make sure it doesn't happen again.

So I have been ringing my consultant since mid January trying to re-book an appointment.

He never answers his phone,so I leave messages.

No one has ever got back to me yet.

In the meantime,I rang my doctor and asked if she had any notes from 1997 onwards?

She said she would have a look and let me know.

She did have some notes and sent them on to Hurstwood Park.

Now at least they know what the clip is made of,but now they have to find out whether it is compatable with the scan I need.....

I was trying to get to France for August on a working holiday,but have just cancelled it all.There is no way I can get a consultation,a scan,and then wait for the results,all in as month...

Anyway,my point is,you should check to make sure your notes are still there.

I know Hurstwood has its own policies.You should somehow check.

Been nice to chat.

[Tina]

Hi Zolabud Its good to hear from you xx

Wow what a time you have been having...bless you.....it always seems to me you have to chase everything up yourself......i do feel for you and really hope you can get it all sorted and get some peace of mind. What a nightmare!!!

Take care

Love Tina xx

[jess]

Hi there sorry to here about all your troubles with your ns, the hospital I was operated on has the same policy it all gets destroyed that is why I have copies of it all now. Hope you get everything you need soon. Jess.xxx

[perrycornish]

Poor you what a time you have been having Zolabud I think that you are right Tina, one does have to be the chaser all too often sadly. Obviously your hospital Jess has the same policy, I think that all do, as over here it is five years not seven, although if you have treatment at all within the time limit your notes should still be there and of course updated!

[Louise]

Hi there

like the others cant believe the time you've been having, but I guess if they didnt do that then they'd overflow with it wouldnt they... I dont have copies of anything sadly I didnt know this way-back-when....

take care

Louise.x

[donna79]

Hello Zolabud

What a mess around x x x

Sorry you have had to cancel your holiday x x x hope you get some compensation you deserve x x x

lots love and hugs to you

donna

xxxxx

[Guest Zola]

Hi all.

Just thought I would do an update on my cerebral angiogram.

The 2nd attempt went ahead in October.This time I had a general anasthetic and all went to plan.

I had a letter in April asking me to go to Hurstwood Park to talk to my consultant about the results.

I rang in December and asked how the scan went and was told that as I hadn't heard anything there was probably nothing wrong.

I saw my consultant and he explained the the coil has slipped a bit and "a small neck element has developed.A small internal carotid aneurysm arises at the level of the opthalmic artery pointing medially and posteriorly was seen on the left side."

Because my short term memory is awful I asked for all this to be put in writing and when I received the letter I was treated to a complete explanation of what happened in 1997,which I had never seen before.

"She had a subarchnoid haemorrhage in 1997 and was found to have a left posterior communicating artery aneurysm and a right middle cerebral artery aneurysm. The left communicating artery aneurysm was clipped and she hads GDC coiling of the right middle cerebral artery later.She has had a few epileptic siezures since,the last being in December 2008.She is on Lamotrigine 300 mgs per day".

Surgery was discussed but it was left that I would have another scan in October this year to see if there was any change in the size of the aneurysm or further slipping of the coil. I am happy with this. I have a friend with an unruptured aneurysm who does not want surgery who is on the same anti fit medication as me and he has no problems as yet.

My Mum has made it quite clear that it not safe for me to fly. I don't agree with her and am finding out now whether there is any risk.

My latest anti fit medication appears to be working as I have not had a fit now since December 2008.

Nice to chat with you all.

Zola. (Pam)

[Vivien]

Glad to hear that things have been resolved

Good Luck

Vivien x

[Janet]

Hi Pam

So glad that you have been given a proper explanation and just check with your G.P about flying if your meds are working there may not be any problem. You know what mothers are like we all worry no matter how old the children are.

[Guest Zola]

Hi Janet.

I know what my Mum is like but she has an uncanny knack of knowing things.She is 82 and is as sharp as ever.

Plus now,after being relatively trouble free (apart from the odd seizure) for the last 13 years it was a shock to be told that my coil has slipped and I have another aneurysm growing in my brain. I try not to worry but I just can't help it...

I have spent the afternoon reading your stories and have shed a tear or 2. It is a very comforting place is this.

I found the stories written by spouses especially interesting as I can remember very little of the day I had my haemorrhage and relied on my partner and son to fill in the gaps.

Mick,bless him fell to bits. I can remember he kept fainting in the hospital as he was hospital phobic.

When I came out of hospital his drinking had doubled.He always had a problem with drink and it was that that eventually killed him.He was only 49.

Also,soon after I came out of hospital the first thing I did was look for a flat as I realised although I loved him dearly his drinking was out of control and he was becoming violent which I couldn't cope with.He was given 6 months to live and he knew he was dying.

My life was a misery...

It took me 3 goes but in the end,over a few months I moved out for good. And left my teenage son Russ to look after him.

I am amazed that Russ and I have a relationship at all as he didn't speak to me for 3 years.But at Micks funeral we hugged at his graveside and I moved back into my old house.

I feel very comforted talking about all this.And am glad to have found this fine website.