Vialdana Here - New Member

[Vialdana]

Hello all. Came here after it was recommended by someone on the Different Strokes facebook group as a good place for specific SAH info and people's stories/experiences.

My husband had an aneurysm that burst quite suddenly just over 6 weeks ago, and caused an SAH. He had what he thought was his first ever migraine while I was out shopping. When I returned, he was sleeping and a while later when I nipped out I returned to find him sat on the bathroom floor very sick and shaky. He didn't seem right somehow, and I got him to move his head around and he said his neck was stiff. His speech was a little odd - not slurred as such but not normal, and he didn't know what year it was when I asked him so I called NHS direct - they told me to call the GP within 2 hours but I did so immediately which I'm very glad of as they said call ambulence which I did. The ambulence people being with us when they were almost certainly saved his life as he collapsed at the bottom of the stairs with them, and then when they got him onto a bed and into the ambulence he stopped breathing on the way to MK hospital.

Although Milton Keynes is our home town and normally feeds to Oxford for Neuro stuff, we were sent to Addenbrookes in Cambridge because Oxford couldn't take him. That same night he had an EVD (drain) put in, and a little over a week later after the pneumonia had eased he had his aneurysm coiled. He was in the NCCU there for 5 and a half weeks, suffered from vasospasm, two infections one after the other in his brain and vasculitis caused by the infection.

He had the EVD removed last Thursday, and was moved out of NCCU onto a neuro ward the following day. He's now taking thickened liquid and pureed food which is great because he pulled out his NG Tube (feed tube), quite a few times in determination not to have it left in. He's still on antibiotics to get rid of the last of the infection, he's still getting high temperatures, his speech is very confused and aphasic and he doesn't seem to know where he is although when I explain things to him he seems to understand them at the time they're said quite well. He's unable to give names of things/people at all at the moment but says he knows who I am and managed about 2 wks ago to spell my name (wrongly but all the right letters) even though he couldn't say it.

It's a very confusing time for me, and I'm really concerned about his ability to communicate with us all. If anyone out there has experienced any of the above and can offer me their experiences I'd be very glad to hear as I'm struggling a bit at the moment to stay as positive as I want to be though I only cry/show my lowness when I'm alone at home - I won't let him see it. For him I'll be positive and strong etc. etc.

Anyway... that's our story so far.

Vi xx

[MaryB]

Welcome,

Sorry you and your husband have to go through this. It is so early on and I can only say from my own experience is I did not get all of it until about a year later. I mean I could not comprehend it all. I was back to work at 5 months but before I got home it was all I could do to grasp it all. It was so far above my head. I think it is a very good sign (see I am tired and I have no idea if that so the word I am thinking of) he can spell your name & knows who you are.

My damage is in my reading and writing area & I can manage and feel very lucky. I think it is really positive that he can communicate so soon. Others will be here soon that had a closer story and may be able to help you more.

Take care, Maryb

[Gill C]

Vi welcome to BTG

As mary says its very early days for your hubby, recovery is a long process & the brain is a wonderful thing for healing & rewiring itself to work as it was before the sah.

At my worst (after vasospasms) I struggled to open either eye, I had numbness & tingling all down my left side & I was very slurred (I thought I was talking fine!).

The slurring lasted for the first few weeks I was home & again I thought I was fine! A friend I rang in the first few days thought I had been drinking!! Now I am completely clear & concise although when tired my speech becomes slower & jumbled.

Basically what I'm trying to say is things will get better, ask for speech therapy for your husband & any other physio etc that might benefit him. You will have to push for those things so don't be fobbed off.

we

You do have to be strong but in here we can help support you & advise wherever we can.

Take care xx

[Vialdana]

Thanks both, it's actually a huge help to hear that others had similar confusion and jumbled words issues and that it can improve I've been worrying about that side of it more than anythign else I think. He's getting physio and speech therapy alternating days - well speech & language are concentrating atm on his swallowing and eating/drinking, but I'm hoping that next time they come in (tomorrow I think), they'll pass him as ok for regular liquid, and we'll move forward another step and they'll start looking more at his speech and language.

He's a very determined person as am I, and as I have Fibromyalgia and have had for the last 15 years, I've some experience of the physical issues (I have fat handled cutlery, perch stool, etc. already) It means I at least know about many of the physical aides that are available for home use if he needs them when he does come home.

I guess this is why its the speech and mental confusion etc. issues are the ones I am worrying about more about tbh.

[KelBel]

Hello Vi

Sorry to hear about your hubby. It must be so hard to watch someone you love go through this.

Having gone through SAH and coiling myself it is hard to come to terms with what happens to you. Fortunately I did not lose my abilitly to communicate, however I often found it difficult to think of the words I wanted to use. e.g. I might have thought 'green' instead of 'park', which used to frustrate me initially. I am 3 years post-SAH now and it can still happen now and again, but it is rare now.

It can take many months for our brains to steadily recover from the onslaught of the SAH, but as Gill said do push for all the help you can get with physio and speech therapy. It is remarkable how well the brain can recover with the right assistance.

You will find a wealth of advise and support here,

Take care

Kel x

[Daffodil]

Hi Vi,

I think I signposted you here as I have had a huge amount of help from this group, I hope you do too.

I had an EVD and coiling and spent two weeks in ICU and another five in hospital in London after a massive SAH Ive been off work since that happened last March but will be going back slowly soon.

It took a while for my confusion to pass , , my frst few weeks i was away with the fairies.

Also my SAH impact meant I had a shunt placed last July and it was after that I found more of my confusion with words lifting as it was most likely the hydrocephalus that I had developed that was exaggerating it.

I presume that he has had scans since they removed the EVD to check his ventricles are behaving normally? If not then that's might be worth checking, quite a few members have required lumber punctures before the ventricles were happy to resume their job properly, in my case they haven't thus why I needed the above doing.

The main thing is drink lots, sleep as much as he can. I can also recommend takin him ear plugs for sleeping in hospital and an eye mask. Bright lights and noise really don't help but are the norm in most wards.

Any questions ask away, someone here will have an experience.

Ps I live very near you

[Daffodil]

Oh and there's a book by the wife of singer Edwyn Collins ( never known a girl like you before) called 'Falling and Laughing'., her name is Grace Maxwell,.

He survived a SAH and subsequent infections , and like your husband had challenges speaking but it's written from her point of view. I read it to try and understand what my husband might have gone through.

It'll be a tough read but it may help you. Sure the library could get it in for you.

Best wishes

[Winb143]

Hello Vi

I was like your hubby, I spoke then slept but I remember nothing until I had shunt fitted.

I do not want to be a pessamist but I got ventricutlitus and sepsis.

A year after SAH I had shunt fitted and returned nearly back to normal apart from walking, but considering they said I

would never walk again, I do a 100 yards then my back goes, but never give up on him no matter what.

Get some rest and sing with him and get him to squeeze your hand ie exercise, thats what my daughter did and

it worked.

Good luck to you both,

WinB143 xx

[Louise]

Hi Vi

Welcome, glad you found us.

I too was like that but slowley things improved it all just takes time...

[Vialdana]

Ahh hey Dafodill - you are local to me aren't you! - And many many thanks for signposting me here, it was very very appreciated, and has already helpped me to meet others who've been through some of the same stuff as Hubby has.

Yep he's had several scans before the EVD was removed because he did have ventriculitis (due to infection) and he also had vasospasm as well.

Scans have shown these easing however, and he's due another scan sometime next week to make sure he's got no build up of CSF since the EVD was removed a week ago yesterday. (It had been clamped on and off for a few days before removal, but had been left in to allow Interthecal antibiotics to be given - was removed because it was populated with a 2nd infection and causing more probs than good).

Am worrying about his temp at the moment which hit 39.7 again yesterday, and was at 38.7 when I rang this morning. I have a horrid feeling they're going to have to give diclofenac again as the paracetamol isn't bringing it down again. I just hope to god it doesn't mean he's got another infection somewhere somehow We've dealt with 3 already (pneumonia and 2 brain infections). *sigh* I so want him past all this so he, I and they can concentrate on his physio/speech therapy properly and get him moving forwards towards recovery.

[Winb143]

Vi,

Keep talking to him as it does help, all you do for him he will slowly remember bits.

I remember my daughter doing things for me slowly some bits are coming back. Other bits I don't want to remember.

You need rest also, so the pair of you keep well xx onwards and upwards Vi and hubbyxx

Love

WinB143 xx