New to this - SAH with complications

[Guest Hannah]

Hi, oh where to start?! On September 27th my mum (47) had an SAH and was taken to Addenbrookes for surgery. Three anerysms were clipped and apart from the pain the doctors were pleased with her progress. After 5 days the vasospasm started which was very severe and created weakness on her left side this led to her being in the NCCU for four weeks, at one point a doctor said "we'll continue with the triple H therapy and see whats left of your mum at the end...." Not helpful?!

There were problems stabilising her due to her also developing hydrocrphalus (water on the brain) but eventually after seven weeks she was transferred to a local hospital. During this whole awful time the doctors reinterated that she had not had a stroke, but the first CT scan at the new hosiptal showed that she had. It is now 10 weeks in and she is on the stroke rehabilitaion ward trying to learn to walk, bladder control and cognitive skills again. I find the confusion the worst, you can be chatting to her believing that it is my mum I'm talking to when suddenly she regresses with strange phrases, questions and telling me what she has been up to during the day when I know she has not really left the hospital bed. I'm finding this all very difficult. I just wondered if there is anyone on here that has suffered from some of these complications whilst recovering from their SAH?

Thanks, Hannah x

[Louise]

Hi Hannah

Nice to hear from you - Wellcome

Yes I understand I was like that I was sent to a re-hab hospital where I had to learn to do things again, its quite a thing when you have to do things that most people take for granted I was convinced that there was nothing wrong with me & the doctors didn’t know what they were talking about – how wrong I was.

I think it’s so difficult for the families of SAH sufferers they have to see people they love totally change in front of their eyes.

It’s takes a lot for the family members to be strong but I think they have to be because that’s what helps us to improve get better.

They say time heals & that is so right, it’s a long slog but in time things do get better.

Take care

Louise.x

[Annie]

Welcome Hannah!! We have a wide ranging variety of SAH experiences here. While your Mom's sounds very severe, I know you will find support here. Louise is the perfect example of a success story!

I would also recommend that you find a local support group to attend if you can. But stay with us anyway and let us know how you are doing!!! We will be interested in hearing of your Mom's progress and helping you through YOUR difficult feelings too.

xo,

Annie

[rince]

Hi Hannah,

Whilst I was only 36 when I had my SAH, and I had only one and that was coiled I've had some similar experiences. I had a minor stroke whilst the emboilisation was going on and later developed hydrocephalus. The path is a long one but there can be a light at the end of the tinnel.

Scott

[Karen]

Hi Hannah,

Good to have you with us! Your Mum sounds as though she has had a really rough time. Can I ask you hold old you are? My daughter Lauren is a member of this site and she's 16. I know that my SAH affected her badly, so I'm hoping that you are coping okay?

You may find that the drugs that your Mum has been given can play a bit of havoc also. I also found that I had very strange and vivid dreams after my SAH.............whether this is something to do with the medication or whether it's just the brain trying to recover from the injury, I really don't know. Sometimes, I didn't know whether I was dreaming or if I was awake, it was weird.

The tiredness/fatigue will probably also play a big part.....I used to love seeing family and friends in hospital, but trying to hold a conversation for longer than a couple of sentences was exhausting and I just wanted to go back to sleep. I'm 17 months post SAH and even now when the fatigue kicks in, I can get confused over doing simple tasks and I find it hard to concentrate when I'm talking..........it seems to be my brains way of telling me to rest up. Once I've had a rest, I'm okay and I suppose it's part of the healing process.

Your Mum has obviously gone through a great deal of trauma, so I wouldn't be too worried about it when she gets confused. I'm sure that over the coming weeks you will notice small changes in her.

On this site we all vary regarding severity of bleed, as Annie pointed out. Some have had fairly fast recovery and others have taken longer and maybe had more physical impairments to cope with. That's the thing with SAH, there isn't a set time limit for recovery, it's very much an individual thing which I don't think people seem to realise.

I can understand how difficult it must be for you at the moment....everything must seem very topsy turvy......do you have other family around you for support?

Catch you later and very best wishes to your Mum,

Love Karen xx

[Skippy]

Hi Hannah

Welcome to the site.

Was your mum put on any drugs like nimopodine to prevent vasospasms? I was put on this and it worked for me. I'm one of the 'lucky' ones who hasn't suffered any physicall effects from my SAH but the emotional battle has been a struggle and not an easy one to win.

As Karen said, individual recovery rate is a varied as the weather from daya to day in place to place. You will start to see changes in her and that will give you encouragement to be strong and know that your mum will win the battle and hopefully she will pick up on yor strength and keep fighting. Be ready with open arms for hugs and big shoulders for tears. As an SAH sufferer I told my husband and daughter that all I wanted them to do was comfort me when I was down, laugh with me when I was happy and be patient with my temperament.

I hope your mum makes a full recovery. Please let us know how she progresses and if you have any questions then please make sure you ask on here and at the hospital.

My thoughts are with you

Sami xxx

[Guest Hannah]

Hi all,

Thanks for all your replies. One thing I have noticed with SAH is that there appears to be a lack of support around it, perhaps because it affects 1 in 8000 there is a lack of critical mass to justify groups and the like set up outside of metropolitan areas. I posted my last post when I was feeling low as I had been unable to get to the hospital for a couple of days. I have been in today for a case conference today and all her therapists seem pleased with my mums progress, although th OT did explain that there was a severe problems with spatial awareness. I saw her take a couple of (very) shaky steps today for the first time, which was great.

A few individual answers...

Annie - sorry no support groups around in the wilds of East Anglia.... although there is a "Different Strokes" group in Cambridge I'll take her to when she is out of hospital.

Scott - How long did your hydrocephalus take to clear up and did it resolve itself naturally or did you need a shunt?

Karen - I'm 28, married and not dependent on my mum. I am however, an only child and very close to my mum we usually speak daily. On the face of things I am a successful, well adjusted person.....! this has just completely thrown me. No other family around apart from my dad and husband.

Sami - She's not on any serious medication now but she was on plenty of Nimodopine as soon as she had the op, but it didn't prevent the spasm.

After seeing her today I'm feeling more positive (of course my moods seem to be entirely dependent on how she is that day) I have a better idea of the therapy she will be taking in the next 6 weeks and she is allowed home for a few hours each day over Christmas!

Thanks again, Hannah x

[Karen]

Hi Hannah,

Good news about your Mum and I'm really pleased for you, she sounds as though she's doing very well!

Sometimes after a SAH, you can take one step forward and two steps back....that seems to be the case for quite a few of us. There's an assortment of good, bad and indifferent times......after a while you sort of learn to live with it and just take each day at a time, as they can vary so much. I've learnt not to look too far forward, as it can seem like a huge mountain to climb. However, things do improve gradually and the support network of family and friends is crucial to recovery.

My first steps were also very shaky......I felt as though my skeleton had completely disappeared ......a bit like a rag doll.....it seemed to take quite a few weeks to get my strength back. When I was first out of hospital, I had the use of a wheelchair and my family would take me out for a walk in it. They would push me for a bit and then I would walk a little, holding onto the chair. Eventually, I didn't need the chair. Gradually, you just get better and better, but I still tire easily even at this stage.

Even though you are 28 Hannah and well adjusted, this sort of experience is bound to throw you, especially when it's your Mum, who's probably been the anchor in your family for as long as you can remember. I suppose it's also weird that as children we rely on our parents to always be there for us and then this happens and the children have to support the parents. I have always had a tight bond with my daughter and that has certainly strengthened since the SAH.

I'm so glad that you are in better spirits......the up's and down's are all part and parcel of recovery, so just stay strong. I bet you can't wait for her to come out of hospital for a few hours at xmas......I bet that it will also perk your Mum up.

Keep your chin up Hannah......I'm sure that you're a big comfort to your Mum.

Keep in touch and sending best wishes to you and your family,

Lots of love,

Karen x

[rince]

Hi Hannah,

Quick answer to your questions is no it didn't clear up, and yes I have a shunt. My recovery from the shunt surgery was unusually quick, I was discharged before the other two people who had the same Op even came round.

On the support side, try Headway as they are experts in ABI (Aquired Brain Injury) and they have centres all over the country. Different Strokes is an excellent organisation, and they can be a great help as well. Above all else try and find people in the same situation as you, there will be more than you think around. The support that I got from just being around people who knew what both me the patient was/is going through and most importantly the people close to me were experiencing was huge.

There is always hope, and recovery is dependant on the person, don't let anyone fob you off with formulaic answers. The worst I heard was a friends doctor told them that there was a six month "rule", and 95% of recovery in SAH occured in the first six months. Utter rubbish. Others I know are still experiencing improvements five years on. So don't expect it to be over night, it's a long road and your mum needs you more than ever before, but don't neglect yourself.

Cheers

Scott

[Guest Hannah]

Thats interesting, my mums consultant at Addenbrookes mentioned the 6 month rule only he said 80% in the first 6 months...... today in the case conference they were on about 3 months..... it is heartening to read about continuous inprovement. I talked to another lady today who has made inprovement over the whole two years since her SAH (with plateaus)

Don't they realise that as a scientist I need consistent information to over analyse, dwell on and worry about ?!?

Thanks to all for their support

Hannah x

[rince]

We were talking about "Medical Experts" in the chat room tonight. Its hard to know what to believe and what to dismiss when the people who are telling you these "facts" are supposedly experts. The "Six Month Rule" has been disproved time and time again yet some people perpetuate the myth by repeating it. Try going on the Different Strokes message board and asking about the "Six Month Rule".

Scott

[Karen]

I was also told that you get the majority of your recovery in the first 6 months and that you still achieve recovery after this time period but it's at a much slower rate.

I'm 17 months post SAH......my recovery has been at a consistent snails pace all the way through this time period and I'm still progressing.......I was worried at the 6 month point when I still hadn't got very far with it all and being told that you won't achieve much more after that point is enough to make depression set in.

It will be interesting to hear what you other guys think about the six month rule.

Love K x

[Skippy]

Hi Guys

I've never heard of the six month rule. All I was told wsa that I had made a remarkable recovery from the SAH. I don't believe that you can put a time scale on this type of injury - its like saying that all individuals need a year to learn to drive - my mum took ages - i took 8 months to learn and pass my test. I do believe that recovery is an individual thing and everyone has their own limitations and pace.

Hannah, keep strong and take comfort and inspiration from the improvement that you see in your mum from day to day. Just be there for her and let her know that you're there. She will have down days and her moods may well be governed by how she wakes up feeling.

Look after yourself too sweetie,

Love and best wishes

Sami xxx

[Louise]

Hi there

No I cant say I've heard of the 6 month rule either, & I asked my husband too he said he hadn't either.

They said I'd be around 80% disabled they didnt get it wrong its just that they dont actually know, sometimes they learn from us, my consultant told us that anyway.

Take Care

Louise.x

[bogbrush]

Hi

I've not heared of the "6 month rule" either. Most of the information I have found indicates an average return to work of >3 months, but even that seems to vary quite a bit. I returned to work 3.5 months post SAH (second day back today), but then I've made a good recovery compared to some.

I've also heared/read that It can take the brain 1 to 2 years to fully recover, so any time scales you hear I would take with a pinch of salt and just go at your own pace.

Disclaimer: Don't take the pinch of salt if you have high blood pressure.

Regards

Keith

[Skippy]

Keith

You never fail to bring a smile to my face

Sami xxx

[Annie]

Well, I was told 6-9 months for complete recovery!!! Wrong. But I am very encouraged by all of you reporting on your ongoing improvements. I am in a long plateau right now since my one year point last October. Mostly fatigue and memory. But both vary day to day. I just have to plan my day a little more carefully and lower expectations of what I''m going to accomplish. The thought that I can still be seeing improvement another year or so down the road is just fine with me!!

Hanna, the word "consistancy" is not one you'll hear much for a while. It's just not that kind of beast at all.

Louise, I am shocked that they would give you such a dismal outlook! That can only impede progress if you ask me. You sure proved them wrong!!! You are even more incredible in my mind now.

merry wishes,

Anne

[Louise]

Hi there

Annie, yes it was quite dismal wasn't but I was very ill, it didn't make me work any harder at getting better I had no idea what was going on, I only found that out about 3years ago.

But yes when I think of it I have done really well taking an 80/20 & turning it around I hope that inspirse people then I've done my bit.......

Hannah, I guess it must be hard wanting all the information to be precise but really everyone is different, I'm talking about people that I actually know & have seen myself their improvements for myself.

Hang in there, take care

Louise.xx