Hello all - Alan

[mrshankly]

Hi all!

Joined this group in order to take advice to my wife Erin, who is recovering in Walkergate Park rehab unit. After looking around, its gonna be useful to myself too!

Erins story is as such.......Last December she was diagnosed with having a 5cm AVM on the bottom right of her brain and our life changed that day. She had her first embolisation procedure in March in order to stop the blood flow thru the veins. She had a total of 4 embolisations is 3 months and then a craniatomy on the 9th June. Due to Professor Mendelow at Newcastle General finding another smaller AVM they expected the operation to last 9 hours.

I walked into the anethnitists room with Ez, where they sedated her and put her under. I walked round the hospital for 10 minutes after that not knowing what to do - so I went back to the waiting room at 9.30 in the morning. At 7pm, a sister from HDU came to give me an update - Erin was going straight to ICU in order to recover from the op. I trotted upto ICU expecting to see her, only to be met with the sister from the unit saying to me 'Erin has had a bleed during the op, and isnt expected to be out of theatre for another 5 hours'. I wasnt thinking straight, I just thought oh well - will have to wait longer. Little did I realise.......

Ez finally got into ICU at 1139 that night, before I could see her the Professor came into see me, he told me there was a bleed (I was still niave, still not fully understanding the implications of this) which was stemmed, and that she lost 15 pints of blood.

I got into see her, and she looked fairly peaceful - all piped and bandaged up. I was told there was no need for a bedside vigil, and that I should go home and sleep as she wouldnt be woken up for another 12 hours.

Went back the next day and I was taken aback, Erins head was swollen/lips swollen/ getting water thru a syringe - then I was told about her left hand side. There was no movement there at all, not a thing.

Fast forward a touch now - Erin was in HDU a week and then moved onto a ward for a further 3 weeks. Very slight movement had comeback in her arm (not hand), and in her leg.

The prof was happy that the AVM had been succesfully removed, and no further surgery is required so Erin moved out of the Hospital onto Walkergate Park rehab unit.

She has been there a month now, and progress is slow. She is getting one hour physio per day (holiday leave dependant of staff - sore point! They dont have cover in place if anyone is off!!!!). Erin can now stand for a very short period of time unaided, however is reliant on a wheelchair to get around and cant yet walk. There is still no usage of her left arm, although she can bend it at the elbow and move her wrist/fingers slightly.

On top of the movement issues, there is a problem with her left eye and a shadow (prof stated she has lost 20% vision), and now she has told me listening to music now sounds muffled!

I visit Erin every day (visiting times are restricted though) and I take the kids in every other day. We are lucky on that we are only 5 miles away from the hospital, and my work is only 2 minutes away.

Im kept busy at home with Emilia (5) and Joseph (just turned eight), who seem to be coping OK considering how close they are to Erin. We always talk about her and her recovery. They are looking forward to this weekend, when will be spending a night and day in the rehabs centre bungalow!

Ive recently gone back to work after 5 weeks off, so its ****** hard juggling full time work/school holidays/hospital visits/kids activities. At the minute, I dont get any spare time til about 930 at night! Luckily I have good familiy around me, who are a massive help.

Usual money worries are now creeping in. Erin hasnt worked since December and is now on half pay - going down to no pay in Nov. Erin works for DWP and myself HMRC (and my sister Job Centre Plus), so we are pretty clued up on what we can claim (at least thats something).

Erin has good days and bad days, bad days are usually pretty bad and she is really down. However, I try and be as positive as I can. Its all i can do i guess.

I feel terrible guilt doing things without her being around, but I know we have to for the kids normality. It was Joes 8th birthday 2 weeks ago, which she found hard. Its her 34th birthday next week and our 10th anniversary in Sept!

Apologies if that was long, incoherent and waffly. Just good to get it all down!!

Alan

Edited August 6, 2010 by mrshankly
typos

[JayKay]

Hello Alan, and welcome. I'm sorry you're really going through it at the moment, but you'll see from the people on here that people really do come back from the worst conditions. My SAH, although "significant", has not left me with physical problems, just mental ones (lol!), but my mum had a stroke 4 yrs ago and she was like your wife. Now, she is living independently again, when once we thought she'd be "not for resuscitation", so it just goes to show!

Take care and say hi to your wife

[sallym25]

Hello Again Alan,

It wasn't incoherant or waffly at all. I'm sure it's a real struggle to try to 'keep things normal' for your kids. I know it's exactly what I wanted for my kids at that time though, so I expect Erin will feel the same. I didn't have any limb troubles so I can't advise you there but I have lost a large section from my field of vision. Unfortunately they said it will never come back and I'd eventually learn to compensate by scanning things automatically. I'm still working on that and I do feel I'm slowly getting there. Time will tell.

I hope you will keep us updated on Erins progress and that eventually we will be able to talk to her too.

Meantime look after yourself and I wish you, Erin and the children all the best.

Take care.

Sally x

[Lin-lin]

Blimey!

You both have been through so much and I think you're doing fabulously well in the circumstances. You've got such an intelligent and pragmatic handle on this and full credit to you.

It must be awful that Ez is troubled with physical problems; but in the context of what happened to her, I think she's made good progress already. It seems that more improvements are expected and I wish her well.

One thing that you will find, is that the recovery is slow... It's frustrating and it will get you down. However, out of the blue, something positive will happen and it gives you strength to carry on further.

I'm sending you and your family lots of well wishes and look forward to hearing updates when you are ready.

Lynne

[Gill C]

Hello Alan, you've really been through it & I feel for you with coping with the children. I have a 4 year old 7 my DH (dear husband) was fab at keeping things normal for him unfortunately it meant I got no visitors in the evening as we wanted to keep to a routine.

I too haven't had the physical problem although I did have some LH side weakness about 10 days into my recovery & it did come back. I have double vision which we are not sure will correct fully or not but there are signs of reccovert but like the others ahve said it's going to take time. I was told genreal recovery 3-4 months but I think it's going to be more lieke 6 months+

As for rehab my Dad had a major stroke & was in rehab for a year doing physio & relearning how to do common tasks & he made an amazing recovery & came home to live independantly & could even drive. I hope yur wife makes the same strides, the treatment & physio they give now is far avanced in the last 15 or so years.

I agree with Lin you will see small steps forward & it will give you the strength to get through this. Be strong & keep things normal for the children but don't be afraid to talk to us when you need it or ask for help when you need it

[janevo]

Hi Alan,

I feel for you alan, but you sound like you are a brilliant support for your wife and children. I only had mine 7 weeks ago and only suffer with double vision and dizzy spells which hopefully will improve in time but 3 years ago at 78 my mum suffered an SAH. She was in re-hab for 3 months and we did think that she was not going to be able to look after herself again. How wrong were we! She lives in her own flat in sheltered accomodation and helps to run the social club there and when I had my SAH was in to visit me nearly every day. I have seen SAH from both sides now so can empathise with both of you and although I'm new to this I'm here if you need to talk.

Jan

[Liz D]

Hi Alan

Welcome to BTG.

What a tough time you and your young family have been through. My children were conseiderably older than yours (22,20 &17) when I had my SAH. It affected my 17 year old quite a bit at the time.

I had a brain stem stroke during my coiling procedure which has affected my left arm/shoulder. But to a lesser degree than your wife. I used to work on a stroke ward and I knew I had to work my arm from the very beginning. I could write holding my arm still with my other hand but it left me with quite a headache. I couldn't get my hand to touch the door handle, it was all over the place and I kept (and still do!) dropping things! But with weeks of practice it slowly got better. I also used to get very confused, I would know who I was and that was it! I'd no idea that I was in my house and no idea what had happened. At first it would last for hours, it still can happen now. I was coming back from physio a few weeks ago, on the bus. At one point I'd no idea why I was on the bus, where I'd been and where I was going! But this now only lasts for a minute or two, so I know not to panic (that makes it worse)and that it will pass. I am now back at work (I'm an NHS administrator) and managing 35 hours per week.

The brain is an amazing thing! However, it will recover at it's own pace and when it's healing it takes the energy from everywhere else, which is why some days are given over to fatigue! Your wife will have days when she thinks - that's it, it's getting better - then the very next day she maybe can't get out of bed. This is hard to get used to. You and she have to look at how she was after the procedure in June and look at how she is today. The person she was before then has changed and it will take time for her to adjust. Very little improvements are still triumphs, but she is still here and by the sounds of things is doind really well, considering what she has been through!

But gosh you have such a lot on your plate and thank goodness for families at times like this! But you must remember to look after yourself!

I hope this helps a little, take care.

[johntaras]

Hi Alan and Erin,

I think you are doing a fantastic job keeping things going while Erin recovers in rehab.

I know from my own experience that the brain is a marvellous resiliant organ capable of fantastic recovery.

I was very fortunate in recovering without any loss of limb movement but have a VP Shunt in my head and the remains of two burr holes which I feel each day. My SAH was last November but I can see improvements in myself. I did not associate my bed as a bed in hospital for several weeks due to the hydrocefalus and confused state.

Time can be a great healer after such serious trauma. I hope Erin continues to progress and I hope you will keep us up todate as she progresses.

Take care.

[Vivien]

Hello Alan and Erin

Welcome to the site and am impressed by how well you are coping with all the trauma

As the others have said it is often quite a long road to recovery but most of us get there in the end.

Take care of yourself

Vivien

[Skippy]

Hi Alan

Really glad that you found us, so a very warm welcome to you and Erin.

It sounds like she has made remarkable progress already and I'm sure (as a mother myself) the children will be a big incentive for her to keep progressing.

You sound as if you have a very good handle on all of this already, so thats a big plus for you and Erin. Recovery rates a very very different for each individual so don't get downhearted if the Docs give a timescale and Erin doesn't reach it - you never know, she may beat it.

I'm nearly four years in and have no physical remnants of my SAH but still get tired more easily than I used to and my memory still isn't 100% but all is good with the world.

Give Erin my best wishes and loads of encouragement - you'll be surprised how determined and stubborn us mothers can be

Take care

[Tina]

Hi Alan...a very warm welcome to you and Erin Keep doing what you are doing You will find lots of help and support here. Look forward to hearing more from you. Take care both, love Tina xx

[maggie]

Hi Alan and welcome. You sound like you are doing amazingly well under the circumstances. I hope that by now Erin has made more progress and is doing well. It is an extremely difficult and challenging time for you all. Take good care of yourelf. Looking forward to hearing that Erin Is making good progress.

[kempse]

Hi Alan

You certainly have a lot going on at the moment. It's good that you have family around who are helping where they can. I hope that Erin will make good progress over the coming weeks - the fact that there is no holiday cover for the physios must be very frustrating though.

I hope the kids enjoyed their stay in the bungalow over the weekend.

I wish you all the very best and a Happy Birthday to Erin for later this week.

Sarah

[Janet]

Hi Alan

A warm welcome to both you and Erin not much else too say that the others already haven't So glad you found us.