carlya

Hi Emssy77, Welcome, I am a fellow newbie too. I am sorry to hear that you are experiencing these headaches and it must be really worrying. I just wondered if there was any chance you could talk directly to your neurosurgeon to get some peace of mind? I know its not always easy and I agree that you should keep going back to the doctors if not. Do not feel embarrassed about it. When you've had such an awful experience it scars you for life and you need to talk about your worries.

I had an SAH 9 months ago and had my aneurysm coiled. I do not suffer from headaches luckily but I do get a very heavy head feeling quite often which I always worry about, I think its natural to. Thinking about it I have had that feeling for the last two days so maybe the change in weather could have something to do with it?

I just wanted to ask a bit more about your experience with having your aneurysm coiled and clipped as I was told last week that I have a small regrowth in the neck of my aneurysm and now have to also have mine clipped in July. Were you given the choice of further coiling or advised to have it clipped? I am very scared about the operation and its risks. When I had my coiling It happened so quickly so I had no time to worry about it really. Can I ask what your recovery was like?

I really hope you get some answers to your headaches soon or they just blooming stop altogether!

Lots of love Carlyx

What a lovely post. I agree I do not know how I would have got through the last year without the support of my family and especially my partner. We have only been together for 6 years but when an illness strikes it takes your relationship to a different level.

I can feel him worrying about me all the time even though he tries not to show it. He also has such a positive outlook which helps with me unfortunately been a glass half empty kind of girl.

I felt sorry for him being the one pacing the hospital floor whilst I was having my operation last time and my impending one will be even longer! Poor man but I love him to absolute piecesxx

I just wanted to say a big thank you to everybody that has welcomed me on the site. Its lovely to hear from you all and I will be venturing into the green room I'm sure shortly. This is all new to me as I have never been on a forum before. Have a lovely weekend everybodyxx

Carly, as Sarah Lou says the shunt is for hydrocephalus because my bleed meant my ventricles stopped working properly. I had an EVD placed in surgery immediately post bleed and multiple lumber punctures in the months following but they just didn't resume working for me thus surgery later on to put in a shunt. Best way I have found of describing it is it acts like a toilet overflow and if fluid pressure gets too high then it releases fluid via a pipe from the device which runs over my collarbone into the abdominal space. There you go. Learn something new eh?

The hair is not vain, my hairdresser was the first one to really make me sob after my shunt surgery, a few months after he paid a special visit to me at home to cut my hair and whilst he applauded the surgeons attempt at my second 'new romantic' undercut withinless six months that it was time to go very short indeed! We both cried! Then laughed. It grows back, always does and you can always get some of that powder stuff to cover the grey or just wear a hat, that's my policy!

Take care. X

Thanks for explaining that Daffodil. As you say you learn something new everyday.

Back to the hair...my daughter has been doing a hairdressing apprenticeship and should be passed in July so may be the time I start using her services at home, will feel a bit funny going to salon and having it washed etc. My sister made me laugh, she said we can both cut our hair short. I said yes but what about the grey? She went very quiet, I said well? Her reply was no sorry I cant do that!!

Anyway as you say it will grow back and its a very small sacrifice for my health hey. I've been hearing lots about the powder and will definitely be purchasing!!

Lots of love,

Carly

Hi Carly,

A warm welcome to BTG.

I had to laff at your comment about not being able to dye the grey! I'd spent a lot of money having my hair coloured just before I had my SAH and the first thing my best bud said was 'ooooh she's gonna go mad about that'!!

One of my first comments was a groan that I'd only just had my hair done! Us ladies eh!!

I had ruptured aneurysm clipped in August 2010. I was cut from middle of forehead to my ear, left side, shaved a couple of inches back.

Must admit the crazy hair style drove me mad for a while (you can see I've very long hair) and the not being able to dye it for quite some time was a struggle! I do like having colours in my hair.

My journey of recovery was a long, slow and at times, very lonely one. Until I found BTG.

This site really will give you so much strength and support.

Always welcome to join in the friendly chat in the Green Room.

I think that it's good to be prepared, look up information you want to, ask as many questions as you need to, for yourself and your family.

Do you have a Neuro Nurse Specialist?

I can't help with the shunt as I didn't have one fitted, I had hydrocephalus but luckily it was treated with lumber puncture.

I'd just like that add that I have had two MRI's since my surgery and they advised me I would likely have MRI's every 3-5yrs as I was under the age of 40 when I had my SAH but I know that every case is different, maybe it would perhaps be worth asking questions about that if you want to.

I wish you the best of luck with your operation.

Take care,

SarahLou Xx

Hi SarahLou,

Thanks for your reply. I don't think I have a Neuro Nurse Specialist?? I'd like to think that I would know if I did  ! What is one?

To be honest I would like to have future MRI's...just in case! I will request this. My consultant has picked up on my nerves with all this. I had such a patchy red neck after my last appointment. I must wear polo neck in future haha.

Lots of love

Carlyx

Hi Carly, prom night eh? That fills me with dread my two girls haven't got there yet!! What a way to get out of it. Only kidding!

I can't talk to the clipping as I was coiled but I can talk to having to have a second operation as I had to have a shunt placed four months later after my bleed and two and half months after discharge and I thought I was ' getting better' so know how it feels to face a second brain op.

Going back in and being operated on under controlled and planned conditions is very different, you can go in prepared, you can ask questions and of course there isn't the level of emergency that preceded the last time which takes the pressure off the family a bit, that said I have no recollection of my bleed and the weeks after my EVD op and coiling so in some ways that was easier than the thinking and worrying that does of course come with this new development. My advice is do as you are doing to manage that; talk to us, ask for some counselling if you feel you need it and cry whenever you need to!

All operations have risk but they will do this in a controlled way and so trust in what they are aiming to do. I have a neck on my coiling and another anneurism so get MRIs yearly to track mine so know the worry that comes with waiting and hearing those results. At least now you know and have a plan.

I trust neuro surgeons, I just do. Anyone who has the gumption and courage to be able to operate on brains and do what they do has my attention and respect so if they think it's the best thing for your case then it probably is.

I was 39 when it all happened with me, and so the hair grew back for the second time and I learnt like many to adjust to my changes and damaged brain and in time the pain of the memories hurt less. Yes it's all blooming scary. Yes it's hard to 'go backwards' but if this helps you have more of a lasting 'fix' it's worth doing, our Carolyn in the US of A has just pioneered some new treatment and that was no doubt scary but she got through it and so will you.

One thing I note, your hair is quite long as mine was and for clipping they will need to shave a part I think so maybe start thinking about the short hair cut you want for summer !

Take care now.

Hi Daffodil,

Thanks for your reply. You have two daughters to prepare for the prom...good luck! It is worth it though when you see the lovely photos. Just wish the photos I have on my phone were not followed by photos of me in hospital 2 days later! I did wonder if the stress of the prom had caused my bleed...only kidding the day of hair, make up etc went really smoothly.

Can I ask what a 'shunt' does? I have heard of it but never looked into it. I hadn't looked into clipping either until recently. We are so lucky with the internet these days to get so much information.

I am feeling quite positive at the moment but I am sure I will have wobbles nearer the time. I think I prepared myself for the worst before I had the angiogram. My partner doesn't quite understand why I do this but its just the way I deal with things. When I was told that I needed another operation I was prepared.

In the photo above I had just had my hair cut from longer and I have since gone shorter in preparation, even though I'm told the shaved part will be coverable...I hope so...how vain am I! I'm more concerned about not being able to dye the grey! I know where I will be the day before the op!!

Lots of love

Carlyx

Thanks Clare. I will definitely take it slower this time. I think the recovery without a bleed is quicker so fingers crossed.

Take care,

Carlyx 

Hi,

My name is Carly. I've finally taken the plunge to introduce myself after looking at the stories on the site for a few months. I just wish I had found the site site sooner when I was first recovering from my SAH, it would have been a great help in those early days.

Last July I had a Subarachnoid Haemorrhage which resulted in having to have an aneurysm coiled. I had just seen my daughter into her school prom, which anyone that has a teenage daughter will know takes about 2 years preparation  , when I had a terrible headache which I just knew was not right. My son drove me to our local hospital and after 6-7 hours and a CT scan, at another hospital as their one was not working, I was told that I had a small bleed and was sent to St Georges, Tooting. When all this was going on I did not want to ruin my daughters evening so had to keep it secret from her until the morning which was awful.

The next afternoon I was taken in for the coiling operation. I was awake but it was all so surreal me and my partner didn't have too much time to think about it and we had no option but to follow the consultants recommendations.

Anyway my recovery was very good and I was very lucky and discharged 1 week later. I managed to get back to work after 8 weeks (I am a part time administrator). Everyone was telling me not to rush it but I was determined to get my life back. In hindsight I probably was not ready and would tell anyone else not to rush it.

In my recovery I found walking a great help and built up from 1 mile to 3 miles a day. It really helped build the strength back up in my legs. I had terrible aching legs, bit like growing pains. 

All was going great and I really felt my life was practically back to the way it was until I had my 6 month MRI in January. It came back showing that I had a very small regrowth at the neck of the aneurysm .

I was told that I needed an Angiogram to look at it in more detail, which I had done yesterday. I was lucky enough to speak to my Consultant afterwards who recommends that considering my age and health that I need to have a further operation . I have decided to have it clipped this time as I cannot risk being in this situation again if further coiling does not work. And as I understand if clipping is successful I will not even have to go back for further MRI's in the future.

I am very scared about this operation that will take place in July and still getting my head around the fact that I have to go through this again. He said that if I was older that I could carry on checking it year after year but the chances are that it will get larger and because I am quite nervous about it rupturing again it is the best thing for me.

I would love to hear from anyone who has had a similar experience.

Wow I wrote so much more than I thought I would, I really must have needed to write down my feelings. Friends and family are a brilliant support but I guess unless you've actually been through it you cannot fully understand the way it makes you feel.

Lots of love,

Carlyx