Jump to content
Search In
  • More options...
Find results that contain...
Find results in...

Hello!

By registering with us, you'll be able to view our forums in full as well as discuss, share and private message other members of Behind The Gray. Why not join us now?
Sign in to follow this  
Ann

New member with non aneurysmic SAH

Recommended Posts

Hi, just a bit about me as a new member. I had SAH on Jan 18th of this year whilst on holiday in Majorca. Spent 5 days in ICU and a further 9 days on normal ward in Palma. Had CT, Catheter angiogram, doppler,MRI etc but no cause for SAH seen on these. I understand that it is normal to have a further CT angiogram or similar at a later date (mine is on 10th March)as in approx 22% of SAH's initially diagnosed as having no cause a burst aneurysm is seen at this later date, lets hope I am not in this %! It was worrying flying home but once the hospital gave me my "fitness to fly certificate" 16 days after SAH I just wanted to get home straight away.

Pretty frustrated as I have now been home 3 weeks and although I now have date for CT I still have not got an appointment to see neurologist despite letter fom Spanish hospital saying I should see someone within 2 to 3 days of returning home, he says he does not want to see me till after CT, that will mean at least 6 weeks rather than 2 to 3 days and meanwhile I am not under the care of anyone!!I feel rather abandoned as I had no idea what to expect re recovery etc until i found this site. Still extremely tired, emotional and get lots of headaches and strange noises in ears but from what I have read here that makes me totally normal, that is good to know!Thanks to everyone for posting their experiences. Really helpful.

Share this post


Link to post
Share on other sites

Hi Ann and welcome!

Glad that you managed to access the website and it's good to have you with us.

I wouldn't worry too much ..... I had a mis-diagnosed bleed/warning bleed at 38 (aneurysm) and went around with a blood clot holding my head/brain in place for the next 4 years.... take things easy and even though I know that you're feeling pretty concerned, it won't be long before you have your CT. If you ever have any concerns, then go to A & E .... we have quite a few guys on these message boards that have had a non-aneurysmal SAH and this type of SAH has a good success rate of recovery.

Share this post


Link to post
Share on other sites

Hi Ann,

Welcome to the site. This site has been a blessing to Jim and I. Jim also had a non aneurysm SAH on December 1st 2007 and is doing very well.

He did have all the symptoms that you have stated you have so it is normal to feel this way.

Going through this we can understand how you feel.

If you have any questions at all please let me know.

Take Care,

Cal

XXXX

Share this post


Link to post
Share on other sites

Hi Ann

Welcome to the site and the family. We're a really friendly bunch and try to help each other as much as possible.

This site has been a god send to me and many others, so I hope you get as much from it as we have.

Take care and 'speak' soon

Sami xxx

Share this post


Link to post
Share on other sites

Hi Ann,

Welcome to this wonderful site. we are all super friendly and you can ask anything and someone will have an idea.

Take care and keep us in touch

Laura

xx

Share this post


Link to post
Share on other sites

Hi Ann

Warm welcome to the site.

That must have been pretty scarry for you, scarry at any time but being away from home :roll:

Sorry you feel a bit abandoned at the moment, I think (from what I've been through) it usual that the neuro dosnt see you till after scans/annies so he has time to study the results

Take care

Hugs

Louise.xx

Share this post


Link to post
Share on other sites

Thank you everyone who has welcomed me, what a friendly bunch!! Good to know you are around if I need advice.

Ann

Share this post


Link to post
Share on other sites
Guest Debbie1969

Hi Ann - I sympathise and emphathise with you completely. I had my non anuryism SAH on 23rd Dec last year and although it really was the best possible outcome I have still been on a rollercoaster ride of emotions ranging from totally irrational anger to tears and complete and utter fear. I to felt a bit abandoned when I left the hospital as they now put you in the care of your GP until you have a follow up.

My MRI date came through 2 days after I left the hospital but no follow up outpatients appt came, so I called them a few weeks ago and it would seem they had 'missed me'. I now have my outpatients appt which isnt till 24th April. So it might be worth calling the hospital and hassling them a bit as sometimes unfortunately we do slip through the net.

I to feel a bit scared that they might find something they might have missed when they did the angiogram. BUT I would like to think that they would contact me before the appointment as its still a while away.

I visited my GP every 2 weeks and although she knew very little about SAH, I would ask questions and if she didnt know she would call the Consultants at the John Radcliffe and get answers for me. Its definitely worth keeping in touch with your GP on a regular basis.

I am recovering really well - the early weeks were definitely the hardest and the scariest, but now I am working on a return to work plan with the company that I work for and aim to be back in the office by mid March. I don't have any great advice as everyones experiences are different but take things 1 day at a time. I can honestly say I am feeling so much better now so please take some solace from that and know that you are not alone! I had some really dark days but I can assure you we are the lucky ones. I have so much respect and admiration for all the people who live with anuryisms and tumours. Their courage never ceases to amaze me.

I know it is a scary time, but dont be afraid to hassle your hospital for your outpatients appt, and follow up MRI's etc etc

Take care and good luck with your recovery.

Share this post


Link to post
Share on other sites

Hi Ann-you are quite normal and it does sort of make sense that the neuro consultant will await the 2nd angio result before he sees you.

It is a while to wait but it is highly unlikely that there will be anything to see.

The second angio is really a double check but you will want lots of reassurance because they didn't find anything and in some ways if there is something found you can at least give it a cause,

You are in the best group in terms of recovery.

I am sure I also had a 2nd MRI and I felt quite abandoned waiting many months to get the results.

March will be here soon-so try not to worry!

Best wishes

Andy P

Share this post


Link to post
Share on other sites

Thanks again to everyone who responded. My CT Angiogram was brought forward to today (phone call yesterday with a cancellation) so that is now done and dusted and the Consultant now wants to see me on 10th March so I am really pleased they have got their act together at last. The consultant has also accepted a copy of the CD with all my original images from scans etc from Spain and says he is having them reviewed by neuroradiologist at Royal Free so that is also reassuring. Hey, I am now in the system and actually exist on the NHS radar.

My daughter (who qualifies as a doctor in less than 3 months time, scary stuff) keeps telling everyone "I can't believe it,Mum looks and acts really normally" which is also reassuring in a strange sort of way.

I do realise what a lucky lady I am and know we are in the group with the best possible final outcome. I just initially felt that the system had abandoned me after textbook treatment in Spain.

Share this post


Link to post
Share on other sites

Good luck Ann and I hope that you're able to find some peace of mind once your angio results come back.

Take care and let us know how you're getting on.....xx

Share this post


Link to post
Share on other sites

:) Ann,

I am so happy for you that you have had the test completed and that you are doing so well.

Please keep us updated.

Stay well!

Cal

XXXX

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Sign in to follow this  

×
×
  • Create New...