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Hello on behalf of my wife who had a SAH last year


mark_wales
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Finally, think I've found a forum that can share and support my wife. During our holiday in Cyprus in April 2011 my wife suffered a SAH (or should I say that's what we think it was). She woke up at 1am with a bolt and started speaking strange things that you just know arent normal and then was complaining of a massive headache I called emergency services but they wouldnt come out and asked me to take my wife to A&E. She litereally couldnt walk and I had to carry her to A&E where the state hospital in Larnaca believe it or not said she was drunk and put her on saolin drip and after 2 hours send us back to our villa. I still had to carry her back to bed and left her there the next day. Luckily, we have lived in Cyprus and by now I was speaking to a private Dr who asked me to take my wife in, he then referred her to a private hospital in Larnaca and from there on they carried out MRI, CAT & CT scan in 1 day and that night I was told my wife had 2-3 mini strokes. To cut a long story short she was in hospital for 8 days and then our travel insurance after a huge fight agreed to fly her back by Airmed (air ambulance), she was then transferred to NHS hospital and spent 2 weeks recovering. No coil was carried out as the hospital still cannot say whether it was a bleed or heomorage. The state hospital were an absolute disgrace but the private hospital were amazing - and I'm sorry to say this but the private hospital in Cyprus were in a league of their own considering the scans they did in 1 day, and the consultants had a conference call at 8pm the same night and the Dr came back to see me at 9pm with the results. And they carried out further MRI scans 3 days later at 7pm at night and called out the team from home to carry out the scans.

So, we are 12 months on my wife made massive recovery she was decorating the house with my last December but has upper left quadrant problems in her eyes and DVLA have taken her license off her, she failed the dot eye test. We are fighting this but believe me they are a real pain and are sooo slow.

And more recently she has been having severe pain in her left arm and it appears to be losing mobility. She was referred back for further MRI scans which I paid privately to speed up the process and last Friday had a CT scan where they found a small unburst aneurysm and has been referred to Walton. We've managed to turn around the results in 2 weeks, the NHS were taking circa 6 weeks before they could even do an MRI. The specialists have said the arm pain is not related to the annie so we should follow this up with Walton.

She's also suffering a lot from fatique and cant seem to fight off being tired a lot.

We are hoping to travel to Cyprus in 4 weeks but need assurance from Walton that the annie is safe and she gets the all clear to fly.

But, I tell you what you dont have to fight your corner and chase Dr's and hospitals dont you.

Edited by mark_wales
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Hi Mark, a warm welcome to BTG. It sounds like you and your wife have been through and still going through quite a lot. I hope they find the cause of the arm pain. I too have an unruptured aneurysm which has been monitored for the past 3 years. I hope Walton give your wife the all clear to be able to go to Cyprus and you both can get to have a relaxing holiday.

Sarah

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I think you should have been taken seriously at first. Many people look drunk who've had SAH. I was so far gone that I was completely paralyzed and couldn't talk...unfortunately, I could understand and remember everything. I hope you can get some answers soon. At every stage, SAH leaves you with a sense of urgency...that what you're experiencing is so horrible. However, if you have more questions than you're getting answers, then you're one of us. I had no aneurysm, but they have no idea why or how the hemorrhage (Blood) got there in the sub-arachnoid space. It stinks not to have answers. Let us hope you find some.

~Kris

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Hi Mark,

Hope your wife soon feels better ....I had SAH with coil fitted in 2009...I cannot remember much,,apart from a tinny taste in nose and throat...which like a fool I ignored, a few days later..I passed out and like your wife spoke silly talk (my Hubbys words and says I still do..lol)....

I was in cuckooland until they fitted shunt in Aug.2010 , l was living with my weird dreams and seeing my Parents (deceased)

ANYWAY !! Cheer up xx she says !!! lol

Good luck to you n Wife...hope you make Cyprus,,,and wife gets better soon .....Check with hospital to make sure Wife is well

enough to travel !! I do not mean to put a damper on hols ....but better to be safe than sorry....

Good luck Mark n Wife

Regards

WinB143 xx

Edited by Winb143
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Hi Mark,

As Kris said it stinks not to have a concrete reason. Even with a definitive cause & treatment, recovery is hard, I'm sure it's harder still when you just don't really know exactly what happened. Hopefully the hospital you are under now will be able to help your wife more.

I sympathasise enormously with your frustration at DVLAs slowness, I am also trying to get my licence back and it is so frustrating that they take so long. I hope you get the all clear for your holiday in Cyprus. A well deserved break after a very difficult year!

Michelle x

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hi mark

i answered your message in linda's thred sorry i didnt see this thread until i answered yours mini strokes are different than sah mini strokes can be treated with a drug to open the blood vessels by disolving the clots whereas sah are only treated by coils and clips i see you are going to the walton centre good place from what i have been told i did try to get linda there you certainly need answers but i wish you both well and hope you get some answers

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Hi Mark,

Welcome to BTG. You will find lots of help and advice here. So sorry to hear you and your wife are still in the dark over what exactly happened that night. I too have been left with an upper left quadrantanopia and my last application for my drivers licence to be returned was refused after they took a whole year to decide ( sent me for all sorts of eye tests and assessments). This eye problem in itself has given me so much trouble I wonder sometimes if it is the cause of much of my confusion. I was due to visit cyprus three weeks after my haemorrhage and had to cancel. I did eventually get there in 2010 ( a year later). And flying was no problem at all. Hopefully your doctors will give her the go ahead and you can get off there soon. There are quite a few people here with unruptured annies and I'm sure they will be able to reassure you more.

In reference to your other post today where you mentioned your recent conversation with your wife, I think we all find the emotional side to be just as debilitating as the physical stuff. I am now reaching 3 years on and have found this is no longer constantly at the forefront of my mind.

Good luck with getting some concrete answers to what is going on for you both, and do enjoy your holiday.

Sally. x

Ps. I do know of one other girl with quadrantanopia who has been allowed to drive again. So there is hope there too.

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Thanks for all the kind & positive words all. My wife has her appointment booked with the Neurologist a week on Monday so fingers crossed. I'll let you know how she gets on once we know more. I hope it's OK and she can travel, we so desperately need a decent holiday.

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Hi Mark and welcome sounds like you and your wife have had a difficult few months. Walton is a brilliant hospital and I'm sure that your wife will get excellent treatment there. Please let us know how the appointment goes and hopefully your holiday will still be able to go ahead.

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  • 2 weeks later...

Hi all, just a quick update - have the review at Walton today, Dr advised a 5mm annie on RHS of brain, he shown us a photo of the CT scan on his PC and you could see it clear as day. He also suggested my wife doesnt fly to Cyprus as they dont have any surgeons capable of coiling in Cyprus if it was to burst (he is correct on this one).

So, Dr advised the annie should be coiled, reckons it'll be booked in for next Month. Shame about the holiday but such is life - wife was upset, but she's a heck of a positive person, she agreed to the op but doesnt have much choice, sitting around worrying about the what if's wont help. Dr advised a 5% death rate of annies, maybe I'll start another thread to discuss her next steps.

Edited by mark_wales
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hello mark

im pleased your wife and yourself have been given the information you required and that it has put your mind to rest to a certain degree

i used to do repatritation of patients for insurance companies as a paramedic and flight medic and cyprus unfortunantly doe's lack quite a bit of medical skills and i would agree with the doctor having repatriated over thirty case's from there it would be prudent to listen to his advice because of the lack of intensive care services all neuro pateints are air lifted out of country every time

it will take time to get over the op but think of the great holiday to come and the freedom of the threat of the question what if

it is a hard choice but the life you will be able to lead will after is somthing to look forwards to

i wish your wife well and hope all things go well

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Hi Paul, your comments make total sense and says it all. There's no way we'd chance flying out there until my wife has the all clear.

On a side note, this all started when we were on holiday in Cyprus last year (we lived there in 2009 for a couple of years thus the reason for being obsessed with the island!) One thing I will say, Airmed who repatriated my wife last year were absolutely amazing. Unbelivably professional and treated my wife as if she was the most fragial thing in this world. Without my travel insurance god knows what mess we would have been in.

Hope your wife is having a good week by the way. I'm going to read your update now.

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Hi Mark,

It's good that your wife's op is scheduled for next month. It's a lot to go through but as Paul said, look forward to the peace of mind you both have when the annuerysm has been made safe - that will be a fantastic feeling! And then you can look forward to a holiday in Cyprus to celebrate the end of a very long & difficult road for you both :biggrin:

Wishing you both lots of luck for the surgery & look forward to hearing how it goes & when the holiday is booked for.

Best wishes, Michelle x

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  • 1 month later...

Excellent news Mark,

Hope you both enjoy your long awaited and well deserved holiday now.

Can I ask please? how is upper left vision siuation? I only ask because mine is gone. I suppose in reality I'm hoping you will say " all sorted". I am told by the doctors I will not get mine back and, although I am slowly starting to accept this, I'm always on the look out for any glimmer of hope that proves them wrong.:crazy:

I hope too that her recovery will be speedy for you both. Do keep us updated.

Tell her we all wish her well.

Sally xx

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Thanks for all your kind words ! It's such a relief and looking forward to things getting better now on. Dr thinks my wifes original stroke was possibly caused by the annie leaking but it's not been proven - I guess well never now, and nor do we know if the annie was there last year. And out of interest each coil costs £1000, some people have been known to have 20-30 coils!

As far as vision goes Sally - yup, my wife has the same problem and it occured after the strokes in Cyprus, she has a shadow in the upper left of her eyes, but no symptoms that are known such as bumping into doors / problems with reading etc. She's had to revoke her driving license as well and the DVLA have been a nightmare - that's still a battle we have going on - my wife failed the field of vision test with 3 or 4 clusters but it's consistent and has not gone worse. But the DVLA are just soooo slow, this has been going on since December last year - they are a rule to themselves. My wife is really starting to show the strain of not being able to drive now - it was hard enough selling her car last year.

And I'm not sure if I already mentioned it but the annie was diagnosed by accident as my wife has been suffering with muscle problems in her stroke arm and the MRI found the annie and no other problems relating to her arm, maybe her arm was trying to tell her something! Who knows but thank god it was found.

Think I've got 2 threads going on now so I better be careful I dont duplicate oops!

Edited by mark_wales
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Hi Mark, I commented on your other thread yesterday :wink:

DVLA are a total nightmare & the time they take is just not acceptable. I got my licence back this week after a very long battle. There really is no excuse for how long they take to acknowledge things and respond to them. I got my new licence yesterday (Friday), today (Saturday) I got a letter saying they are pleased to inform me that I am fit to drive & will receive my new licence in the next 2 weeks :roll: I would still be waiting for their decision if I had not contacted my local MP. I only did this after they consistently missed their own time scales, followed by a non response to my official complaint to them - they said they would respond to the complaint within 10 working days, they missed that slot too! I'm still waiting for the response to my complaint but really not interested in it as I now have my licence back at last. I had exhausted every available avenue before contacting the MP but maybe more people should to high light the massive failings within the DVLA system? It clearly needs a huge overhaul of their practices or more staff to deal with the back log.

I was told 4 years ago that each of my platinum coils cost £6000,(I had 3 annies coiled over 2 separate operations & have never asked how many were used in total - I don't think I want to know as it might upset me). Good to see that like everything else, they are coming down in price to keep sales up :lol:

Good luck to you & your wife with her recovery. So great to have that awful worry over with, things can only get better from now on :-D

Michelle x

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