Stuart

Personally I would prefer an MRI to an angiogram but the main thing is the result at the end of the day. I have my fingers crossed for you.

I have my post surgery check angiogram on Mar 10th so we may get our results at a similar time, like you I'm anxious about what they show.

All the best

Stu

I like the way you are carving your own direction for what works for you - good stuff and keep us all posted.

Stuart, congratulations on your 2 hours! It does feel so good to contribute again! I really like how you are scheduling short hours and gradually working your way up slowly. You have a chance of success by taking it slow.

Sandi K.

Thanks Sandi, my employers have their own Occ Health nurses and mine put my plan together with my manager and I.

What doesn't help is that I was outsourced whilst off so have come back to work for a new employer with all new systems etc so it's almost like starting a new job in a lot of respects.

Glad to hear you are taking things a bit easier and how good your employer sounds.

Stu

I hope you are successful in returning to work, but just make sure you health doesn't suffer. I like you couldn't wait to get back to work and also the financial side played on my mind.

Take it slowly as you can over do things at first and become really tired.

Let me know how you go on.

Thank you Dawn, have just finished my first 2 hours which went well

This is a timely thread as I'm starting a phased return to work on Monday, 3 months since my craniotomy. I'll be doing 2 hours a day to start and building up to 37 over 12 weeks if I can.

I work for a very large IT company so fortunately can work from home during this period and for 4 out of 5 days once full time. I think it's achievable but I won't really know until I try. The rehab plan can be adjusted if I struggle so I'm really lucky in that respect.

If it was up to me I'd stay off longer but unfortunately there is a big round of redundancies coming soon and it may help my case to be seen to be on the road back to work.

That was one year ago TODAY!!

Happy 1 year Anniversary JayKay, that's quite a milestone I imagine !

x

my SAH happened during sex

Hi Kelvin,

I'm so glad to hear things are sounding positive for you

Stu

Hi Pete,

I had a 2 month post op follow up recently and it was just a chat to see how I was doing.

Stu

I've just started exercising again, and am building up slowly. Makes me very tired but I also feel much more 'alive' and happier now after about 5 months of not doing very much at all.

Hi Steph,

different to you but I had a very rare condition called a dural fistula.

I've read that is also in the 1 in a million category. When I went up for my pre-op appointment the nurse said that they were looking forward to me coming in as I was

an exciting case, not really what I wanted to hear.

I wanted them to use words like routine or straightforward !

I'm only up the road from you in Worthing, are you being treated at Hurstwood Park ? I know that you are in good hands if you are.

My op was last Oct and I just trusted the experts to do what they do so well (can't say that I wasn't just a little concerned though )

Stu

A very lucky girl indeed. It's great to read how well she has recovered so far.

Well I had my follow up meet with my amazing Neurosugeon yesterday and he seemed pleased with my progress. I will be having another angiogram (yuck) in 4-6 weeks and if the results are good then that should be it. No more scans and I can get my life back hopefully.

Hi Neil,

so glad you are doing so well. Reading your blog and posts on here prior to my craniotomy really helped me to prepare for my op and your positivity and humour was inspiring to me, so thank you !

Cheers

Stu

Thanks all for your kind wishes. I have learned the hard way about overdoing it, so am learning to listen to my body.

The NHS speech and language therapist phoned yesterday and after a chat decided that I didn't have a great need for therapy now and should carry on doing what I've been doing on my own.

Here is a long overdue update from me, bad news first.

Basically I've had a hard time following a craniotomy in Oct for my dural fistula. I was quite well after a SAH in Aug amazingly, then I had an op to disconnect the fistula which went well and I was fine straight after.

The problems then started due to swelling of the brain. I had very sroke like symptoms and at one stage I couldn't touch my nose with my hand.

My right hand felt like a constant electric shock so had to use my left for everything, couldn't walk too well, lost the peripheral vision in my right eye, developed dysphasia and cognitive problems.

The good news is that I'm improving well, my speech is 95% normal now, I can read and write ok again, have relearned how to type and everything apart from the sight seems to be slowly improving, although I'd like it to be quicker !

I've got a long way to go until I'm as sharp as I used to be but am positive I'll get there or near enough one day.

Oh and the fatigue is hard work but that is getting better too.

Stu

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 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

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

My GP said that from now on he will always refer anyone with a thunderclap type headache to hospital regardless.

"The number of road accident deaths in the UK has dropped to the lowest level since records began, according to government statistics that showed 2,538 fatalities last year."

I'm astounded that there are more SAH fatalities than road fatalities.

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

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.

I've sent this website address to the friend of the girl at work as apparantly she could do with contact with others she can relate to regarding recovery etc.

And you are all so nice

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

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

thanks all

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.