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Deja vu!


Guest rachelwells
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Guest rachelwells

My Brother Jon had a ruptured Aneurysm on the 17th Feb 1994 It happened on the Elephant And Castle Tube Station in London, He was taken to Hospital and then transferred to The National Hospital where they carried out the clipping procedure. His first son was born two days later.

He recovered very well and after many years can can laugh about the things he did when it was happening and the weeks following and his special party trick of sounding off a metal detector on his head!(because of the clip) We were told by the surgeon at the time "it cant happen again" oh god how wrong he was!

On the 29th July 2007 he has suffered another heamorrhage, this time, 1 ruptured aneurysm, 2 unruptured aneurysms, and the original clipped aneurysm had re-grown. he now has 4 clipped aneurysms.

the week following surgery he has suffered vasospasm, infarction/stroke to both sides of the brain, Hydrocephalus which they inserted a shunt, then removed, two days later because of infection, and then a few days later he had D.V.T which he is now being treated for.

He has spent 5 weeks in intensive care, 2 weeks in HDU ward And now has been transferred back to our local hospital Where on monday we were told he is suspected of suffering another haemorrhage, but after CT scan they now think it could be another stroke or could be pressure from the CSF causing respiratory problems which he is now having, and now he has been transferred to the stroke unit.

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Hi Rachel

My heart goes out to you at this terrible time. I've got all fingers crossed that your brother makes a good enough recovery to have a good quality of life.

Those of us who have survived are very lucky to have done so and I can't begin to imagine what you or your brother are going through. I suppose the only comfort you can take is that in the last 13 years technology and procedures have come so very very far and he is in the best hands.

My thoughts and best wishes are with you.

Sami xxx

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Hi Rachel,

I'm really sorry to hear about your brother ..... I think that this is one of our many dreads, that this could happen to us again .... I had a warning bleed approx. 4 years prior to this SAH.

We have a story on our website, but forgive me if I've got the wrong name, but I'm sure that it's from Pat (aka Patacake) .... her poor husband has suffered from many SAH's over the years, caused by an AVM.....and has survived and from what I can see, has had a good quality of life.

All I can say is, don't give up and if you need to talk, we are here to listen ...

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  • 1 month later...
Guest rachelwells

Hi Everyone Thanks for your kinds words of support!

Since writing the post so much has happened, Jon is still with us!!(he is definately a fighter!)

Right... since writing the orginal post, its appears he did't have a another bleed, he had excessive pressure which has caused him to decline, he was transferred back to London where they fitted another shunt, that was the 31st October (his birthday was the day before!) his brain/ventricles has now finally calmed down, he was transferred back to the local hospital, and now transferred into another stroke unit. after many weeks of coma state, since sunday this week he has been brilliant!!

We have all said he has a mountain to climb! but he does'nt even have his boots on yet to climb it! although he is still very confused and that may never go,(we have seen the scans, extensive damage,grade 5 bleed ) last night I was telling him how much we loved him, and did he think i was being a soppy c*w, he whispered yes, but it's a good job im a soppy b***ard!!

Over the last few weeks i have thought that maybe we were being selfish for him having the surgery and that how could his body go through this for a second time? we will see......

Jon has many problems/hurdles that need to be adressed but he has the support from us, his movements are limited and the indication is that he will not walk again, we will see....

With regards it happening again..... I have been in contact with the chap who is currently running the ISAT study i will send the details to Karen once I have his permission to do so. once again thanks to you all XX

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Hi Rachel

Sounds like Jon is improving - baby steps as we say alot on here. A day at a time. He'll get his boots on soon enough and be off up the mountain before you know it.

Give him my very best wishes and don't forget we're all still here for you hun.

Sami xxx

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Hi Rachel,

Thanks for the update on John .... what a rough time you've all had ....good to know that he was able to respond to you in the way that he did .... just shows that he's a fighter and he's retained his sense of humour .... bless him. :) Let's hope that they've sorted him out with the 2nd shunt .... I've read that sometimes, there can be initial problems with the first shunt.

As the rest of the guys always say, anytime you need to talk, you know where we are..... Love to John and you too..... keep positive, hopefully now the pressure has been relieved, he'll pick up and begin the recovery....

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  • 9 months later...
Guest rachelwells

Hi to Everybody!!

Hope you are all well?

Well what i can say? Jon is home, after a year in Hospital!! He came 25th July 2008 All but 3 days (2nd sah happened 29th July 2007)

He has been left with several challenges! (i dont like to call them problems because none of this is his fault, and he is not a problem!!) He cannot walk, and is in a wheelchair, he has confabulation (false memory) awareness issues, ( does not know what has happened to him) doubly inconinent, and needs 24 hour care apart from that he is great!!

Luckily he still has his sense of humour and one mood- Happy.

Im very reflective on what has happened? One part of me feels selfish for wanting him to live, and one part feels glad that he is alive so he can still be with us! If he knew some of the things he does he would be horrified!!

In the last year he has been from one hospital to another, the hospital system lets this condition down, personal opinion has let him down, what i mean by that is- yes the surgeon has saved his life there's no doubt it and the staff in the unit were amazing, but when you are transferred back to units and hospitals that are not specialised in this condition- god help you!

I have stories that would make your toes curl! the aftercare for this condition is apalling. Jon has been left with a lot of challenges but to have them made worse but people's ignorance to this condition is heartbraking and i have, more than once thought it would of been better if they had'nt operated (im really sorry if i upset anyone by saying that but i will explain in later posts)

I have walked into the wards and argued with junior doctors because of there ignorance to this condition, and gone over their heads, Went into one unit and he had been laying in his own urine for 8 hours,( this happened so many times i have lost count) went into another unit and found a nurse trying to feed him yoghurt while he was comatosed, with a GCS level of 3. Transferred from one ward to another and not placed on a air matress because he did not fill the criteria?, even though he could not and had not moved himself for 7 months, prevention is better than cure?? then he got pressure sores after about 3 days, then they put him on an air matress!!

He is home now and it's lovely to have him home, I feel worried for his wife, she is now his full time carer and it's ok for me to say but she's the one looking after him 24-7 he has carers 4 times a day which to her feels like an intrusion, but it's something i suppose you have to live with if you want the help?

The other thing i feel sad about, is Jon is going to be a grandad!! but his memory only allows a working memory, so he can have a conversation, but nothing retains in his brain. ask him two minutes later and he won't know what your talking about.

Jon can transfer from his wheelchair to a car so i have taken him out to the shopping centre, he did attempt to buy 14 packets of razors which was funny because he doesnt even like shaving!! and could not believe how many people look at him- i wanted to shout at all of them you could be like this next week, all because of this little thing in your head!! and the probability is i have walked passed many people that have a anuerysm and don't even know!

Anyway it's been quite nice sounding off!! and think i will pop round and see Jon now, see what he's up to?

speak soon

Rachelxx

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Guest sarah c

Hello Rachel, what a really sad story, you and your brother are two very special people. Can I please just ask a few questions, did your brother have the bleed from exactly the same spot as before, I had a SAH 7 years ago and they clipped it and said it would never happen again. How was your brother after the first bleed, did he live the same sort of life as he had before?. Also I was told 2 years ago that my fouth ventrical was slightley blocked, and I now wondering if this could cause be any problems. I really hope you brother continues to approve and I send you both lots of love. Hope to speak to you again Love Sarah.

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Guest rachelwells

Hi Sarah,

Please don't feel sad about this! It's happened now and none of us can change that, we still have Jon and there are people in a far worse condition than Jon, who have no family, there the people i want to sit and sob over! If i had my way i would take them all home with me!!

When Jon had his first bleed, looking back it was text book and very straightforward compared with this time, he recovered fully and unless you knew him would not know he had had one, he had a slight weakness in the left side. the bleed was not from the original clipped aneurysm, it was on a new site, but the original site had re-grown and the clip was on top of "another" aneursym. As you know all people are different and what happens to one wont nescessarily happen to another, but the one thing i will say is, we were told the same "it could'nt happen again" but it did, I did find a website about this very subject, as i was so angry when this happened again. i will dig the website out and send it to you.

The article explains that years ago they were considered a "once in a lifetime" event. but now should be treated as a continuation rather than once in a lifetime. Regarding your fourth ventricle? do you have a shunt?

Regards RachelXX

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  • 4 weeks later...

Hi Rachel

My brother died in a car crash from head injuries, and there isn't a day that goes by I don't think of him and miss his wonderful smile. So even though he is not the same try not to feel selfish the alternative is hard as well.

Hugs and well wishes Evelyn xxx

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