Jump to content

Hi from tom newbie here


akjnutt

Recommended Posts

Hi all my name is Tom i am 35 yrs old and i had an Sah in january this year unbeknown to me or my family at the time.After being out working i came home at 2-30am on january 29th and went straight to bed.I awoke at around 7-30am with a headache pain behind my left eye so went downstairs and took two paracetamol and went back to bed but couldnt sleep,as the day progressed the headache went away but other things such as slurred speech and loss of feeling in right arm made me and my family agree i should visit my local A&E.At my local hospital i was admitted to the stroke ward and given 2 paracetamol for headache.Next day i was told after a CT was done and nothing could be found i was free to go home and the doctor put it down to a migraine(although i have never had a migraine) but would book me in for an MRI scan which i would receive in the post.So i went home and had the rest of the week off work as i felt very tired and drained but went back to work the next week walking miles every day in the countryside on my lonesome and going about father duties (playing football with my 11yr old son)and building a fence at home-until i got the MRI appointment through WED 22nd Feb 2012-Went to appointment from my work as couldnt take any more hols and asked the lady doing it jokingly if she saw anything she just said "oh the doctor has about 800 pics to look through" oh well worth a try i thought.Next day about 10-30am the doctor from the stroke unit called my wife and told her that something had showed up on the mri and would it be possible for me to go to hospital asap.I was transferred by ambulance to Southern General in Glasgow to the Neurology department by 1pm.They done an angiogram and found 2 bulges one of which had been bleeding and one with the potential to bleed.Was told they would try coiling them on the 28th February but this failed-then had to wait till 7th March for another operation with a stent and blood flow divertor and coils although i am not 100% sure if coils were actually used.After a further 3 days in hospital i was allowed home-i have now been home 2 weeks and although physically feel ok mentally i am a bit all over the place.I keep thinking about why it happened how close i came to dying will it happen again and up until now had no headaches bu last couple of days i have and have started to worry bout these too lol sorry am ranting now need give fingers n brain a wee rest am over the moon to have found this site though pleased to meet you all

Link to comment
Share on other sites

Hi Tom

Welcome to the site and to the family. You'll find lots of advice, experience and friends on here so feel free to ask anything you're unsure of. So glad that you found us. Unfortunately a few have been misdiagnosed with migraine but luckily lived to tell the tale.

You should be told whether the aneurysms were coiled during your op though, so might be worth making an appointment with your GP as all notes should be passed to them.

Make sure you're getting plenty of rest now though and plenty of fluids too - it'll help with the fatigue and the head aches.

Take care of you

Link to comment
Share on other sites

Hi & welcome Tom, you are in the right place so pull up a chair & make yourself at home!

What you are describing is all perfectly normal & sure won;t the first or last time someone with an anni has been told it;s a mirgraine & sent home with no treatment.

you have been through something huge & that takes a lot of getting used to, the 'nearly dying' bit is hard to accept & even more so when people say you should be grateful but you don't feel it.

If you haven't already read the Brain & spine foundation#s booklet on anni's you can contact them & ask for a copy which is fairly basic but useful nonetheless. Their website is also useful although not as busy as BTG.

The biggest worry post op are the headaches but they are normal & quite often caused by the blood from the bleed dispersing. It helps to drink lots of water to stave off the headaches & if they are worse after exertion to take things a little easier. Also if you go to the Home page on here & look under Inspiration read 'letter from your brain' which is a great piece of writing & really helps you understand what is happening in there.

lastly the best place to be is here as there is always someone to help or advise no matter what you ask! You are lucky to find us so early on (yes it is early on until you are at least a year post anni in recovery terms despite what your neuro might have said)

Take care xxx

Link to comment
Share on other sites

Hi Tom, glad you found this site, but sorry for the reasons you've had to.

It's always disturbing, but also quite common, to hear of misdiagnosis at the outset. There are several of us on this site that this has happened to and I know I found that particular aspect hard to come to terms with. It will probably take some time before the mental side of things get back on track, so plenty of rest, water and a bit of good humour along the way are a few things that should help!

Take care and don't forget this site is always open!

Sarah

Link to comment
Share on other sites

Hi Tom and welcome,

I had my op in the southern too (2009). Luckily there was no delay with misdiagnosis and I really cant fault the hospital. Sorry to hear though that you've been discharged with no definite knowledge of the coilling situation. I'm sure if you call them and ask they will get back to you quickly. If not, your gp should be able to help by reading through your files.

Don't be disheartened by the mental and emotional issues you will be feeling. It's very common after such a trauma and you will see from this forum we all seem to have the same worries. It is a great site and really makes you feel part of a team rather than completely alien to the world around you. It has helped us all enormously and we have made some very good friends in each other.

Make sure you rest lots and give yourself plenty of time to recover. We all have been surprised by how long it really takes. If you try to rush it you may disappoint yourself for pushing too far.

Hope you will get positive answers about your op and feel better about it sooner.

Take care.

Sally. x

Link to comment
Share on other sites

Hi Tom and welcome to this site, I am one year post SAH and still sometimes feel emotional and fearful at times but it does get better you will see from others on this site all that you are feeling is normal after SAH/aneurysm discovery so try not to beat yourself up about it, I would contact your surgeon or GP and ask for the exact details of what you have had done you need to be armed with this information, have a good day and once again welcome x

Link to comment
Share on other sites

Hi thanks for the lovely welcome everybody i already feel a bit better just from reading some of this website its great.I was misdiagnosed at my local hospital(AYR) but once transferred to the Southern General in Glasgow i was in awe of the treatment and care i received.On my discharge letter it states stent assisted coil embolization of the a-comm annie and blood flow device of the ica annie(if this makes any sense)The consultant and surgeon came to see me before the op and explained it but i never took it all in lol and they came after the op but dont recall seeing them.They did tell me i would have to go back in a months time for an angiogram so i await the letter for this.I am just trying to take each day as it comes and am grateful to see the sun every morning and my lovely family i wouldnt have been able to cope with all this without my wife and kids and finding this place has made it a bit clearer thanks again everybody i will be here frequently no doubt lol http://www.behindthegray.net/vbulletin/images/smilies/icon_wink.gif

Link to comment
Share on other sites

Hi Tom

Welcome to the site!

Sorry to hear you suffered mis-diagnosis at such a grand scale! It does make you think about all those times you were walking around feeling ill but oblivious to the extent of your illness before they eventually diagnosed you correctly... it is a life-changing event and makes you question everything.

I found I was getting really bad headaches a month or so post-SAH, and was told by my GP that it was anxiety-related. Although that may have been the case it didn't really help me much. It is very difficult not to worry when something like this happens out of the blue... and you are then discharged and left to get on with it!

What did help me, was when my counsellor (contacted via my work) advised that I was suffering from Post-Traumatic-Stress (this was not however diagnosed by my GP). Once I read up about it online, as well as the leaflet she gave me; it helped me to make sense of how I was feeling, and why I was feeling that way. It still took a long time for those feelings to lessen, and I still get the odd fear now and again, even just over 2 years on.

As others have said, lots of water will help hydrate your brain and limit the headaches somewhat, and lots of rest.

It is very unlikely it will happen again but that doesn't stop us being worried that it might, and wondering if every twinge, ache and pain is it all starting again. If you are worried though, just go to your GP or straight to A&E for a check-up.

Look forward to hearing more from you.

Take care

Kel x

Link to comment
Share on other sites

Hi thanks for all the lovely welcome messages

I was misdiagnosed at my local hospital(Ayr) but once picked up i was transferred to the Southern General in Glasgow where i was in awe at the care i received although i was petrified they really were fabulous from the nurses on the ward to the theatre people and the surgeon and consultants they saved my life and do so for others daily as if its nothing.

I had a look at my discharge notes and according to them i have had stent assisted coil embolization of the a-comm ani and blood flow device of ica ani(the surgeon and consultant came to explain afterwards but i was still woozy and cant remember exactly)they did say they would come speak to me before i got discharged but i got out on a saturday so assume they werent there,also said i would get an angio in one month is this the norm?

It has been a shock to say the least and everywhere i turn people tell me how lucky i am to be here but i struggle to grasp this and am terrified at every twinge at the moment,i have been getting not so much a headache but a feeling of warmth in a small area on the the top of my head but wonder if i am just being paranoid lol .

Although i am only two weeks home from hospital i had no ill effects from the bleed or the operations and feel pretty lucky in that respect as i know lots of you have had other things to contend with but the mental side of it is something i never thought of but with the help of my family and this place i hope to progress.

Thanks again for the replies and i will definately be on here regularly its brilliant to meet you all

Link to comment
Share on other sites

Hi Tom welcome to btg it is still early days for you and you are bound to have headaches and other funny sensations try not to worry and do what your body tells you too and drink plenty of water. Jess.xxx

Link to comment
Share on other sites

Welcome Tom! I had mine the day before you. You're only 8 weeks out and all these feelings are normal. No one had told me I'd be so tired, confused, that normal things would blow my mind and make me tired, or that I'd get head splitting headaches. (I was told I'd get headaches, but not HEADACHES!)

Be careful with when you feel good that you don't overdo it (stop laughing everyone, I can learn). I had a fantastic feeling day last Monday, WAY overdid it, and ended up returning to probably three weeks prior in my recovery. This last week was the hardest in three weeks.

If I could change anything, personally, it would be that I would NOT have gone to work after a month. I would have either gone part time or not at all, and maybe be starting back now. I had no idea, though. It's one thing when you're in the hospital (I was in 19 days) and laying around at home to "feel okay" but it's quite another to actually go work a 40 hour work week and expect to be able to function normally. I was tired before the end of the first hour on day one, missed day three, and so far haven't made it a full week without a day off. Will try this week, but will take a day if I need to (particularly since I have an all night LAN party for my students on Friday).

I don't know what I would have done without this site. I was told to go home and rest, and given a copy of a Heart Healthy diet (must be protocol...I'm a teacher and personal trainer/weight loss coach and have very low BP and heart rate, marathon runner, triathlete, etc.). Not helpful at all!

I was blessed that they took me seriously and I had a CT scan right away. In fact, they took it way more seriously than I did. I was in a lot of denial. But oh well..here we are now, alive and ready to move forward...just gotta do it carefully!

Link to comment
Share on other sites

Tom Hi,

It is scary....we go through a lot of emotions...well I did...lol....A woman came on here the other day and typed that

she had an SAH 19 years ago.......so don't get down....we can make it

All the Best

WinB143

Link to comment
Share on other sites

Hi Tom

Warm welcome to the site, glad you found us.

what your feeling is all quite normal as far as I know every one feels that way, after all you've had a tramatic experience.....

take things easy your early days...

Take care

Link to comment
Share on other sites

Thanks for all the lovely replies i cant thank you all enough i am spending some time having a read around the site and will no doubt be asking some more questions soon lol its just good to find people who know what your going through and have answers to questions i am not sure of thanks again .

Tom.

Link to comment
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.

×
×
  • Create New...