Thank you KEITH

[Annie]

Dear Brain Gang Friends,

I just watched the first episode of the Brain Hospital which Keith kindly sent to me. Jack watched it with me, and I must say I am deeply moved. In fact, I found myself in tears long before the teary parts began! I guess it was a little overwhelming to "be" back in the hospital and "experiencing" a bit of what we went through before. Several things surprised me too.

The SAH fellow had his angio which all seemed very familiar, and then because I hadn't seen the coiling video which you all had, I was a little surprised at how similar it was to an angio as far as getting in there to do the job and getting out again anyway. The coiling was very interesting, and I am so grateful that the procedure is available for all of my new friends here. We are ALL so lucky, that's for sure.

The other thing that surprised me was that that patient was out of the hospital walking around and "smelling the roses" after such a short time. Right now I can't remember if it was 2 days or 2 weeks for him (memory!!!) but either way, it was SHORT compared to my recovery and I didn't have an aneurysm! I was very ill at home for 7 weeks and had some serious trouble with walking for quite some time. So, it goes to show how very differently this event effects us all. Another reason I need to get my "story" on line here, so it can help someone who has a similar experience.

I was surprised that this affected me as much as it did. I revisited those feelings of vulnerability that have haunted me some since the hospital.

Thanks, Keith, for sending it to me here in Ohio. It did not play on my dvd machine after all, but just as you said, it worked on the computer. As I promised, I am donating a toy to the Christmas clearing house in your name. Something for a boy.... hmmm..... maybe a Frankenstein! or a doctor kit!

What I really want to do tonight in the worst way is run to a pub and meet you all there and have a good hug and a cry. I am really pulling for those of you that are struggling with tougher issues than mine, and I look forward to the day when we can all celebrate together our being past the worst of it. Then of course, there will be new members coming along and I expect many of us will stay a part of this to help out a little if we can. I feel really frustrated that there's not a group here. I am tempted to contact my hospital about that, but fear being asked to start one and monitor it, which I am not prepared to do. But I might take up being a pest until THEY do it.

Well, enough rambling. Love you all,

Annie

[Karen]

Hi Annie,

What a lovely man Keith is ..... great idea about donating a toy for christmas.

I was also surprised to see the guy that had the SAH leaping about when he was discharged from the hospital. I came out in a wheelchair, as I could barely walk a couple of steps unaided. I felt like a rag doll. It will be interesting to hear how other people left hospital.

Next weeks programme also looks interesting, although I'm not sure whether to watch it, as it might give me even more to worry about and my sanity has been questionable this week! ...... think some of it is about a poor woman that has weakened arteries in the brain, that could burst at anytime.

Well, I've been awake since 3.00am ..... we're experiencing very bad stormy weather down the south of England and the rain and wind is keeping me awake. I will just have to catch a nap later on or I shall be like a zombie!

Sending you a big hug back and lots of love....

K xxx

[Annie]

Oh Karen, it is sooo nice to have you back. I've missed you. If broadband is that much better, I am more excited than ever that Jack and I are having the house wired for cable and broadband in January. Won't be long now!

Yes, I left the hospital in a wheelchair too. :/

It was super of Keith to send me the dvd. Andy, too, is a dear... he is sending me the Southampton one. Good guys!!!

[Skippy]

Hey there

Pretty stormy and cold here last night too. Today wasn't too bad (apart from losing the footie match) but wrapped up warm and feel fine.

One of Paul's friends had an SAH 22 years ago and they didn't give him surgery and he said to me today that it's VERY important to keep the head warm in the cold weather cos it affect s you a lot more than it would do normally. So there gos the voice of experience 22 years later.

Can second, third and fourth that regarding Keith and Andy - both sending me the DVDs too - if I smile sweetly and flutter my eyelashes

I came out of hospital pretty much like that guy. My parents collected me and we went for a walk around a park in Cornwall. it was great seeing the kids playing and the birds and the sun - I was up and walking, washing and showering myself on the Tuesday and had the SAH on the Thursday night. I know without a shadow of a doubt that I am one of the lucky ones. But the after affects emotionally are pretty similar and thats one of the reasons we're all here.

Regardless of my recovery rate emotionally. I'll be here with you guys for years to come because I've found some kindred spirits in you all and I treasure you as much as I do my second chance in life.

Love you all dearly

Sami xxx

[Louise]

Hi guys

Getting pretty stomy here again too forecast said 80 mile an hours winds oh joy!!! another rotten sleep ahead I think.

About the first man that got out of the hospital on the documentry, I waked out of the hospital only to another hospital but on very shaky (very) shaky legs.

What I thought about it though was other people would think well thats him home to recover, for some thats when all the hard work starts.

But what a good programme thankfully for me its brought back no memories at all of that time.

Louise.xx

[Karen]

Hi Ladies,

Louise, I quite agree with you re: the guy walking out of the hospital and everything looking sort of "hunky dory" ....... I know that it's only a TV programme and an excellent one at that, which deserves applause and I can only feel great, great admiration for the medics that work at these places .... don't think that I could do it ...... but I'm sure that many people viewing the programme and not knowing anything about SAH would probably think that we all have that sort of recovery........ it was only about 6 months post SAH that I realised how different the recovery was for each and every one of us.

The mental/emotional side is the same for every single survivor of SAH and that's where we all have the common bond .... how to deal with that one is probably the biggest issue for us all and that's why it's so important to have a support network and befriend other sufferers. It doesn't matter how long or hard our journey is down this road, we are all in the same boat.

Sami, hope that you will be with us for years to come ..... now I've started this site, I will certainly be here for as long as I possibly can. It gives me more back than I put in and for that I'm grateful and I really enjoy having a natter to you all....it's been great therapy for me and I also treasure my SAH family!!

Annie, I've missed you too!! Broadband is great.....so you can look forward to it...well worth it!! Andy is a treasure......he often phones me when he knows that I'm feeling down.....bless him. It's lovely to have the contact and always much appreciated.

It's just lovely to know that there are so many kind people surrounding me.

Love and hugs to all of you reading this,

K xxxxxxxxxxxxxx

[rince]

Like you Karen I could barely walk when I was allowed home, I won't say discharged because three years on and I'm still not officially discharged!

SAH as is obvious affects the organ that least is known about, and even a couple of millimetres can make a huge difference in outcomes. I used to be suprised at the wide range of outcomes from a single illness until I got my head around that simple fact. The very best I've seen personally is a guy from B'stoke that ran the London marathon in the year following his event, but he is now realising I think that his life has been changed forever. As most of us have no outward physical signs of how serious our condition is/was/will be those who don't know us well can fooled into thinking we're fine. That's in no way the truth as many of us can testify. Memory, concentration, and far many more are problems that not only us but those closest to us have to live with. In many ways I'm not the one who had the worst deal in all this, my wife has had to put up with much MUCH more than I have.

TV like this does SAH no service, it shows no concequences and zero long term effects. It blinds them with science and gives the impression that this is a condition that has a total cure. We all know different.

Still every day I feel happy to be alive, and be able to help bring up my two young boys (10 & 12). There is an upside to such a life changing event, but until they do a documentry on those long term effects people are still going to believe that we are "alright now".

[Karen]

Hi Scott,

I totally agree with your thoughts......beautifully written as well.

At first, I was wondering whether it was just me that thought this way and whether I was being a bit of a gloom and doom merchant, but the sort of "happy ever after" ending to this guys story tended to stick in my throat a bit. He was a very lucky man, but I wonder how many people post SAH, actually leave the hospital in the same condition in comparison to those that will suffer long term effects?

Blimey, I'm beginning to sound like a right old misery!

I was looking on the Headway website this morning and they also had a feature on Richard Hammond from Top Gear, I've quoted it below:

Following the welcome news that Top Gear presenter, Richard "Hamster" Hammond, is on the road to recovery, Headway, the brain injury association, has issued a stark reminder that the majority of people who sustain a severe brain injury are left with life-long disabilities.

Headway this week received calls from people whose lives have been devastated by brain injury and who fear that the publicity given to Richard's recovery will convey a totally misleading impression about the nature and severity of the problems they face.

Peter McCabe, Chief Executive of Headway said: "It's wonderful news that Richard Hammond is on the mend, but his situation is in no way typical of people who have suffered a severe blow to the head.

"Brain injury as a result of road accidents, accidents at home or work, assaults and falls can mean physical impairment, memory problems, emotional difficulties and complete personality changes.

"It can mean the loss of a job, the loss of a home and, in many cases, the break down of a marriage. It's incredibly important for people to realise that ordinarily, brain injury is not something you can simply get over and get on with your life, although it would be great if it were!"

I think that this says it all really,

Love K xx

[/b][/i]

[Skippy]

Hey all

What would be good is they did follow up programme on all the people that were involved in the Brain Hospital programme to show the problems that we suffer as a consequence of a brain injury - unfortunately it wouldn't be seen as good TV and therefore not feasible. It feels that the programme was more of an ego boost and promotion of Nuerosurgeons than the people that suffered. Don't get me wrong, I admire the people that save lives on a daily basis, butit did tend to skim over the reality after surgery. We could all stand and smell the grass and be grateful, but what of those who after have felt that they can't go on.

Luckily for us thats what we're all here for and the very reason we have this invisible bond that will tie us forever

Sami xxx

[Louise]

Hi there

Glad it wasnt just me that thought like that with that guy, I would be so pleased if he's just sliped back into his old life but I would be amazed if he had, I think like Sami that it would be good if they did a follow up programme because the way it is at the moment people dont know just what a harrowing experience it is.

It was a long time before I was discharged from the hospital....

Bye just now, Louise.x

[Karen]

Hiya,

Sami, you're quite right that it wouldn't make good tv. I also appreciate that the docu is about the work of the Neurosurgeon's, rather than the patients experience ......I just feel that anybody looking at the programme would think that once the surgeon has "fixed" the problem, that we all return to our old normal self and for a lot of us, it's just not the case.

Anyway, enough of me on my soapbox!!

Love K xxxx

[Skippy]

Hey

You stay on that soap box girlie - we're all right - people thinkthat because we've been fixed and discharged that nothing is wrong anymore. maybe we should all write to the BBC and ask for follow ups on the people they used on the show so that the public are more aware of the after affects of something like this.

I used to be a fiesty, strong willed person and there wasn't an awful lot that got me down - maybe I was too hard faced I don't know, but now I tend to cry at the drop of a hat and get emtional over things that never touched me before - maybe thats the good thing to come from this - maybe I wasn't supposed to be so hard so I got a seriously big kick up the bum to change. Some of my friends can't get used to the new me where others that are closer love it cos they know that somewhere a little deeper is the person I was before. If I am completely honest I prefer the person I am now and instead of fighting these new emotions that I'm feeling I'm going to embrace them and learn to accept them.

Take care all

(the new and improved) Sami xxx

[Annie]

Hi All,

I guess my observations of that episode touched a few nerves. I'm glad that others saw it the way I did too. You're right Karen that it was about the surgeons, and not the patients, and I was aware of that while watching. But I guess it's been good for us to air those feelings that we had about that portrayal of SAH. In fact, talking to all of you yesterday touched off a whole flood of emotion for me. I'm getting to be like that too, Sami!!!

It prompted me to write to my 2 closest friends and invite them to read some of our discussion. I felt I needed to remind them that I am not the person that I was, especially stamina-wise.

A.

[Louise]

Hi there

That’s exactly the way I saw that Karen sorted!!

People I know are amazed when I say ‘in some ways this was the best thing to happen to me’ before I was quiet, not saying I’m the total opposite but I will hold my own now.

Sami that’s what I had to do really as I said to Ronnie in those early days ‘the old Louise is gone’ instead of fighting against it I accepted it that was when I moved on.

Annie, I think that’s a good idea of yours getting your close friends to read some things on this site, I found that a lot of people distanced themselves from me in the early days, (well more like months rather than days) in-fact if I’m honest it wasn’t just friends family too, which is sad but I have some good friends that see me for being me.

You should remind them that you aren’t the same person you were, people just need a little reminder from time to time.

Rambled enough as normal

Louise.xxx