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Members that have had a non-aneurysm SAH?


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Stu welcome to BTG. I had a clipppig on an ansyurism that han't bled so if there is anything I can help with just ask away. The recovery in hospital was quite quick (just over 2 weeks) but the main part is done at home & does take time. Try to drink lots of water (they advise 3l a day for anni patients!) & rest s & when you can. It can be frustrating in the early days but t does pay to listen to you body.

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Hi Stuart,

Welcome to the site. I'm regularly confused by the many different reasons for members haemorrhages. Will need to look yours up now too. I'm sure the doctors will have explained it all to you. I hope your appoointment goes well next Monday and you feel positive about the outcome. I'm sure you will be worrying until it's all over, try to remember.. these guys know their stuff. We BTGers are living proof of that. You're so very lucky to have come through all this so far and feel as well as you do. Hopefully you will be exactly the same post op too and the ppeace of mind from knowing you have lowered the risk of major incidents in the future will help with your recovery lots. I hope you will come ask about anything that bothers you as someone always comes back with reassurance. (best site in the world).

Looking forward to hearing more from you.

Best wishes

Sally xx

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Hi Jo :) a very warm welcome to you....well done you....how far you have come...keep up the good work...take care love Tina xx

Hi Stu :) also a very warm welcome to you....wishing you well for your op and for a speedy recovery...take care love Tina xx

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thanks all :-D

Regarding the fistula, there are lot's of different classifications and risks but from what I've found out these things are generally aqquired for some reason whereas AVM's are born with. In my case it is right under a lump on the top/back of my head. This is where I banged my head on the pavement about 10 years ago.

It's likely that the bang caused a clot as there is a thrombosed vein so the blood flow then found another vein and started draining the wrong way down that. It's arterial high pressure blood draining the wrong way down a vein not suitable for high pressure blood, hence the risk of future problems. Mine is a Borden type III which is the most risky.

Whilst the surgery isn't going to fix the shunt, the aim is to clip this draining vein and remove that risk. Hopefully in future the shunt will just 'cycle' according to my Neurosurgeon and not create any more fistulas.

As I feel so normal at the moment (although I'm not doing anything physical or driving much, to be sensible) I'm concerned that the op will give me permanent issues to deal with. Anyway it has to be done and as Sally said above these guys really know what they are doing. My Neurosurgeon is the Principal Lead Neurosurgeon at Hurstwood Park which is reassuring.

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I had my Pre-Op assessment at Hurstwood Park today, all was fine which was good news. The best news is that my Craniotomy / Clipping operation has been pencilled in for the 26th Oct so I will be going in a fortnight.

It's kind of odd to be looking forward to such a major operation but it's more a case of wanting to get it over with. Also the worry of further bleeds since the initial problem has been a bit scary.

Any suggestions for things I should get organised now for when I get home ?

I will try and keep you updated post op on how things are going with me.

All the best everyone

Stu

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Hi Stu,

Hope that you manage to get the October 26th date, as am sure that you'll just want it all over and done with, so that you can move forward and not have the stress.

I'm not sure what suggestions to give you for when you arrive back home .... probably just get some help with the general day to day things and plenty of TLC and rest!

Wishing you the very best of luck ....will be thinking of you. xx

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Hi Stu , hope all goes well and on schedule without any delays. Try not to think too much about it only I don't know what to advise to distract you!Your bound to be worried.

As for when you get home I think some nice cosy pillows/ cushions so you can sit propped up and feel comfy either in bed or on the setee. Arrange for someone to monitor your visitors cos they will tire you out if you have too many.And everyone will want to see you. And most importantly as Karen said get loads of TLC and rest don't try to rush things.

look forward to hearing from you and wishing you all the very best will be thinking of you xxx

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Right I shall prepare our spare room as a comfy room for me with a tv, dvd, laptop, pillows etc, thanks for the tips.

I've just had an email reporting that one of my collegues was rushed to St Georges in London on Sat from work with a haemorrhaged cranial aneurysm, apparantly he is in a serious but stable condition and will be having the aneurism repaired shortly. There was also a girl at work who is a friend of the chap that sits behind me who had the same a few months back, also at work. She is undergoing rehab at home now I believe and is expected to make a good recovery.

There's far too much of this about at the moment :frown:

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Isnt that strange 3 of you in the one place.

In time maybe you can all be support to each other.

As for when you get home think Karen & Maggie have it right...

& like Karen says hope you get the date your give, so it all can be over with...

take care

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Hi Stu,

Yes, I found the same after I had the SAH and that there was about four people that I mentioned it to, that were related to somebody that had experienced the same .... even though we're told it's rare. Quite scary really!

I only found out a year or so ago, that my Grandfather died of a Cerebral haemorhage, but he had reached a good old age before it happened. My late Mother-in-law also had to have an unruptured aneurysm coiled, so I do worry about my kids having it on both sides of the family, so I feel that it's important to have family medical history passed down and hopefully nip anything in the bud before it kicks off.

Maggie mentioned pillows and yes, if I was you would get a V pillow if you've not already got one .... I'm still in love with mine! :lol: xx

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My partner still has the lovely V pillow I bought her when she was feeding our babies. I shall have to grab that.

Apparantly this girl I mentioned has also had family members affected by aneurisms so I couldn't agree more re family history.

It would be nice if they would scan 'at risk' people before any problems arise.

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Hi Stuart,

Just wishing you all the best for 26th - hope they have changed the pencil entry to pen and it will go ahead for you on that date. It is certainly such a relief to have it all over with. I would think tiredness may be the most noticeable thing afterwards, but sounds like you already have plans for that! Look forward to hearing from you again in due course.

Sarah

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Hi Stu,

Sounds as though you've got everything sussed for your post-op care! :wink:

I've asked both my kids ... well, they're not kids really, as they're 23 and 20 now, but they said that they wouldn't wish to be scanned at the minute. I've discussed it with them and from my own research, there's not many that are operated on, if the aneurysm is below a certain size or poses an immediate risk ...

I'm not sure whether I would have wanted to know either and that I was living with a possible ticking time bomb in my head and don't know whether that would have altered the course of my life or not...it possibly could have. However, being aware of your medical history is something that they both now know and am perhaps more worried for my daughter, as there's a 3:2 female to male ratio with SAH's. All I can do, is make them aware and they definitely are since my own SAH, but wouldn't like to think that my own experience would hinder their future lives. It's a hard one and something that shouldn't have to burden their early adult years, but I do keep a good an eye on them and nag them when appropriate! :lol: xx

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thanks again for your well wishes !

Karen, thinking about it, at your kids ages I doubt that I would have wanted to have been scanned either. Particularly if they find something but then leave it.

The nurse who did most of my pre-op yesterday did say that 'my' Neurosurgeon is on holiday next week which is good news for me as he won't get any new cases booked to him so hopefully my op won't be cancelled.

Apparently they are quite excited about my case as it's so rare and that I'll probably go into surgery first thing because of that. I would prefer it if they used words like 'easy' or 'routine' instead of exciting.

I also got a copy of the Neurosurgeons report in the post today. This surgery really needs to work for me as the alternative endovascular approaches are described as high risk :frown:

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Stuart good luck for your op. I was clipped in June & only had a few hours to think about things which was probably a good thing.

Not sure if you have said where you op is being done but hopefully they will give you some contact No's for you to call if you ahve any concerns at home. I am lcuky in that Wessex has a nurse specialist i can e-mial with any concerns. It might also be worth you contacting Headway for additional support if you need it (they also support family members).

Everyone has given brialliant advice so it's just a case of listening to your body & taking things slowly, it really does get better!

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Hi Stu,

Will be keeping my fingers crossed for you and really hope that you get the day allotted to you ... it sounds promising if the Surgeon is "excited" about your case and that the rarity of it will hopefully keep your surgery on schedule! :wink: Stu, you have to always find the positives! ....Plus, he will be refreshed after his holiday! :-D

I know what you mean about the terms that that they use and that they're not very "patient friendly" or reassuring. After my first angiogram to check the coiling, I had a letter from the Consultant to say that my coiling was "satisfactory" .... it was really not what I wanted to hear ... as "satisfactory" reminded me of my O'Level grading at school and it was just about a pass and pretty average .. I was hoping to hear that it was "excellent!" ... I was mortified at the time! I went on to discover that they couldn't coil the neck of my aneurysm as it was too small or too difficult to attempt. Anyway, have got over that, but wording can mean so much when you're looking for reassurance.

Anyway, I'm still alive and kicking! :lol: xx

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Hi Stu

Welcome to BTG and good luck for 26th. I shall be in celebrating my 25th wedding anniversary that day, we're going to the Grand Hotel in Brighton for a week(I used to live in Worthing), so I shall be thinking about you and wishing you all the best.

I am the 4th member of my family to have a ruptured aneurysm. My grand father and cousin died but my other cousin survived. I have 3 sisters and 2 brothers. 2 of my sisters are going to be checked but the others don't want to be. My consultant advised me to speak with my children and they do want to be checked but they don't scan anyone with a family risk until they are 30. They are 24, 22 and 19, so they have a bit of time to wait.

My case was rare too, my consultant had said that he has only seen arterial damage like mine in road traffic accidents! My case was descirbed as "very interesting" and the operating theatre was full to bursting! I was awake for the first 2 hours and was also aware of my "audience". But it all went very well for me, as I'm sure it will be for you.

As for when you come home, lots and lots of rest!

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Gill, I am in contact with the Surgeon's secretary (who is superb) so if I want to talk to someone I'm sure they can arrange it. I'm going to Hurstwood Park Neurological Centre at Haywards Heath. My Dr phoned me and said if there is anything I need then to call him.

I'm not sleeping brilliantly at the moment but I that's to be expected I guess.

Karen, I don't think they are big on reassurance, they just tell it like it is and don't elaborate too much !

Liz, awake for 2 hours during the op :shock: that. Enjoy your week in Brighton at The Grand, that sounds lovely. I suspect your meals may have the edge on mine that week.

So plenty of rest, water and general lounging about afterwards. I am limbering up already :-D

I'm taking next week off as holiday so I can have days out with my family beforehand.

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Hi Stu,

Sounds like a great plan to me! ... Hope that you have a good week off with your family and it's a really lovely idea! :-D.... and here's you asking us for advice ... sounds as though you've got it all sussed out for yourself! :biggrin:

Don't worry about the sleeping .... it's only natural to be worried .... I would be worried if I wasn't worried! Am sure that you will sleep like a baby once it's all over and done with....hopefully, you can make up with a few cat naps here and there...

Take care Stu and wishing you well.... xx

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  • 2 weeks later...

Hello, I am new to this board and thought I would share my story of my Perimesencephalic Subarachnoid Hemorrhage.

I am male, 34 yrs old with no previous medical problems. I woke up from a nap 46 days ago and got on the computer. All of a sudden I had a bad pain in the back of my head/neck. I thought maybe I had pulled a neck muscle so I tried to lay down for a minute. It didnt help.

Soon I developed a bad headache, the worst I had ever had. After about 2-3 hours I started throwing up. I tried to sleep once again but the pain was too much. I went to the emergency room at the local hospital where a CT scanned showed blood in my brain. I was shocked.

The ER doctor said "your scan shows blood in the brain, I have called the neurosurgeon and he'll be here in 20 minutes so we'll start prepping you for surgery right now"

I couldnt believe what I was hearing. Before the surgeron arrived they sent me back for another CT scan, this time with the contrast.

After that scan the surgeon came into my room and said they couldnt detect any anuerysm or source of bleeding so they wanted to do the cerebral angiogram test.

Suffice to say the cerebral angiogram test was TOUGH. I honestly thought I was going to die during the test. My heart was doing crazy things and my limbs went numb twice.

After the test they sent me to the ICU and a nurse casually said "oh, they didnt see anything on your tests so you are fine"

The doctors and surgeon didnt even come by my room for 6 hours. I went from planning surgery and telling the nurse my next of kin information to just sitting in an ICU room alone with apparently everything being fine.

I stayed in the ICU for 4 days and then was released.

I had a follow up CT with contrast about 3 weeks later and the neurosurgeon said everything looked fine. The meeting lasted 10 minutes with basically no information from the doctors.

Its now 46 days later and I am basically back to normal with a few exceptions. I have constant mild pain/discomformt in the back of my neck and mild short headaches. I tire easily as well. Apparently this last another 2-3 months from what I have read.

Everything I know about my condition I have learned on the internet and I have tried to read every study I can find.

I hope to gain some other knowledge from this board. The only instructions I got from my doctor was no strenous exercise for 3 months from the time of the bleed.

I am a competive mountain biker and triathlete as well as active in my other sports. As of right now all I do is walk everyday for about 15-30 minutes. To be honest I am scared to do anything more.

Hopefully some of you can chime in with information or studies about future risk of rebleeding.

From what I can tell, there is almost no risk of rebleeding after about a week from initial bleed. Have you guys been told the same by your doctors or research ?

http://stroke.ahajournals.org/cgi/content/full/38/4/1222

http://www.uptodate.com/patients/content/abstract.do?topicKey=%7EkbxUbGmB8WXqiwH&refNum=2%2C4-7

Edited by Surfer34
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