New Member Introduction - Carly Adams

[carlya]

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 

[ClareM]

HI Carly

 

Welcome to BTG and well done for taking the plunge. Unfortunately I cannot help you much as mine was a NASAH so no coiling or clipping involved. However there are so many people on this site who have had such experience and will have plenty of advice for you and encouragement.

 

I would have thought best to do something now rather than wait and see if it 'blows'. Good luck with the operation and don't try getting back to stuff too quickly!

 

I am sure plenty of people will add to this thread!

 

Clare x

[carlya]

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 

[Winb143]

Hi Carly,

 

I had coiling done in 2009 I knew nothing about until 2010 when my shunt was put in.  I was bad with Sepsis and Ventriculitis .

 

I cannot walk that far, so what I am trying to say to you is it's better to have it done while no bleed is there.

 

Carolyn who is in the USA has just had a pipeline put in it's a new method, people on here correct me on what Carolyn has had.

 

You must be scared Carly but you'll be okay xx (easy for me to say).

 

When Carolyn comes back she can tell you about her Trail Blazing experience xx Be Well and Chin up xx

 

Good Luck

 

WinB143 xx xx  Laughter helps xx and my singing so prepare yourself for a tune later. xx

[Tina]

Hi Carly 
 
A very warm welcome to BTG.
Glad you found us but very sorry you are having to go through such a worrying time again.
 
I had my ruptured aneurysm clipped at Atkinson Morley/St Georges Tooting back in 2007. Marios was the Consultant then. I cannot praise the hospital enough.
It is normal to feel scared about your operation in July, but you are in the very best of hands. 
 
Wishing you well for your op and for a speedy recovery. Know that whenever you need us we are here to help and support you and share our experiences   
Feel free to ask any questions and join in the daily banter in the Green Room.
 
Its good you wrote down more than you thought you would....you are in the right place to share your feelings with others that can empathise with how you are feeling and what you are going through, good days & bad.

Look forward to hearing more from you
Take care
Love Tina xx

[Carolynusa]

Hi Carly!  Hope you're feeling better today.  It's one step at a time and a lot of positive thinking.  I had a rupture in June last year with coiling and clipping etc etc etc.  two days ago I had another surgery where my wonderful doctor inserted a "pipeline" up into by head near the site with the coils and clips.  It is to move my blood flow around the area with the clips and coils so that there is less blood flow bombarding the area.  All went well and I am home to annoy my husband.  

 

Like you I sat and read a lot of the posts on this site and learned that so many people had the same thing happen and that I am not "different" than so many other people.  Besides, isn't it great to learn that all of these wonderful people are survivors and want to spend time to make other people feel better and safer about their problems?  You are not alone Carly.  We already love you just by the fact that you found the site and are sharing your feelings here.  Remember..one step at a time and don't overdo it.  Take care and Win isn't kidding when she says that singing is one of the greatest ways to keep positive.  

 

Love, Carolyn usa - honorary Brit according to Macca.

Hope to read more from you soon.  Try to stay positive.

[Macca]

Hi Carly,

 

Welcome to BTG!  The truth behind these things is that everyone's experience is at least slightly different.  There is every reason for optimism though and there will undoubtedly be someone who is similar to you in what they've been through.

 

Fortunately for me I don't have to go through a second operation - one was quite enough for me and wasn't an experience I wish to repeat!

 

Nevertheless, if I had to I would, my doctors and nurses were superb and I would have every confidence in them.  Take your time in recovery, the world will still be here on the next day and the one after that.  Nothing is as important as your health.

 

Stay hydrated and take one step at a time.  Patience and stealth are the way forwards to good health, with the support of those around you - and us!

 

From what you say, it sounds as though you are fairly fit which should be a big help at operation time!  Good luck and please let us know how it goes.  I'm sure others will add to this!

 

Best wishes,

 

Macca

[Daffodil]

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.

[subzero]

Hi Carly

 

Welcome to BTG from a carer- my wife had her SAH April 2011.

 

AND

 

A big welcome to your husband too who I am sure you will agree is also playing an important part in your recovery-

 

Because recovery from SAH is long and gradual there are so many emotions along the way and I feel for you both having done so well in your initial recovery only to find that six months on you are having to face the challenges of another major procedure.

 

You are only human to feel scared and apprehensive but as already said by our great BTG posters-you will be in the great hands of your medical team.

 

I wish you both strength to deal with the days ahead-

 

Take care both of you and you will find great encouragement as you read the stories of other SAH posters on this site

[carlya]

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

[SarahLou]

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

[Daffodil]

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

[carlya]

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

[carlya]

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

[carlya]

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

[Super Mario]

carlya, you will be very welcome to join in the banter in The Green Room.

That's if you can stand Win's singing.

[SarahLou]

Hi Carly,

I was assigned a Neuro Nurse Specialist while I was still in hospital. She came to talk with myself, my hub and my parents.

I was able to contact her anytime, she'd always return my calls, and believe me I contacted her many times in early recovery. My hub also contacted her in the early days when I'd done do much and really suffered, he actually thought I was having another stroke.

Also, when I felt I was ready (which was about 18 months after surgery) she went through my whole case with me, explaining everything what happened from the time I was admitted into A&E. Hearing all of that really helped me.

Sadly I don't think all hospitals have the Neuro Nurse Specialists.

I'm also very lucky as where I was treated (Wessex Neurological Unit) they run support groups too.

As for the hair..... I actually took lots of photos (sadly don't have them now as lost on an old phone) it was good for me to have a visual reminder. Wore head scarfs, thick head bands etc. as it grew I'd clip it back. I had my longer hair at the back cut a bit shorter to balance it out a bit as it grew. It's now longer than before it was before SAH!

Perhaps you can talk your sister into doing a charity hair cut, raise funds for the ward treating you, you could have a celebration party/ get together before your operation!

Take care,

SarahLou Xx

[Sharlua]

Hi Carly
A big welcome, pleased you found this site. just like you I had a small bleed and aneurysm coiled in January I have to wait until June for MRI to see if it needs anything further. I know you must be very nervous about another operation but I guess they are experts in this field and must feel it is your best interest. I personally would prefer this to wondering if it will bleed again and the devastation that can bring.

 

I have had terrible trouble since SAH with legs and feet and have MRI scheduled in May to check spine as they are not sure if related to SAH, I'm keeping fingers crossed i won't need anything further as hoping to return to work next month, GP won't sign me fit yet!
Good Luck I am sure it will go well x

[Winb143]

Cheeky  Super lol xx I just saw that !!  So slow now days,  got me laughing here xx

 

Sorry Carly tis true nobody gets away free on here I will sing to you soon   !!!  

 

Keep Bright and smile when down. Oh Yes sing happy songs xx any songs you like I'll ruin them xx

 

Keep Bright and think of happier times when a bit down.  Fills Carly's glass up again.

 

Love

Win xx

[Louise]

Hi Carlya warm welcome to the site, glad that you found us.

 

they only shave a bit of your hair so don't worry it'll grow...

 

Wow, SarahLou wished that was the case with me with the Neuro Nurse Specialists that would have been very welcome...

 

Carlya take care and try not to think about it & I know that is SO easier said than done...

 

take care

[kempse]

Hi Carly, I've only just seen this thread, so a warm welcome to you.

 

I had coiling done 6 and half years ago after a ruptured aneurysm, then had to have more coils inserted a year later.  I still have a neck on this for which I still have regular mri scans to see if it has changed. At the same time they check another aneurysm that I have. My next scan should be in August.  I have already been advised that if the unruptured one needs treatment, then it will have to be clipped not coiled. 

 

So, I do understand how all this can make you feel.   I too trust the neuro surgeons and their teams - they are amazing people in my view. 

 

I don't remember too much about my daughter's school prom, but I do remember my sons - I got a call from the teacher 15 mins before the end asking me to come and collect him, he'd had some alcohol which obviously wasn't allowed and then peed in the car park! As it was a 30 minute drive away, I just ignored the request! I have just got to get one more son through his prom next year, then I'm done!

 

Wishing you all the best,

Sarah