The process of being diagnosed with an aneurysm.

[54Apple54]

Hello everyone

This is my story of being diagnosed with a 15 mm brain aneurysm.i feel a little nervous about doing this as it will make it more real.

{Oct 2017) My GP sent me to my local beacon to investigate my Tinnitus,he gave me a hearing test and within 10 min after telling him I have had no brain injury but I do have nf1 ,he told me I had low frequency hearing loss ,a hearing aid might help with the Tinnitus and I’ll send you for a mri scan to check all is well -no need to worrie as it’s very rare to find anything and if you don’t hear from me then your case is closed.

I go for a mri scan on the Tuesday 7th Nov and on the sat morning I receive a phone call from the radiology dep to make another appointment for a MRA scan ,I ask, why as no one told me this was necessary ,it’s to look at your blood vassals in your brains he replied ,you should of been told,after that she couldn’t wait to get me off the phone with the appointment booked 10days later.

On the day of my scan I received a letter saying that the scan showed a aneurysm in one of my arteries and will need a different scan and will be refereed to a specialist who deals with this problem .And also the scan showed up a lesion and you’ll also be sent to a specialist for that one.

So to say I was in shock would be an understatement as the only thing I new about aneurysms were you die suddenly without warning - walking the dog , going for fish and chips -every day to day event .

I then wait a week for results ,no call/letter .i visit my Gp who printed off my scan results that showed a had a a 15mm dilation of the cavernous also segment of the CIA aneurysm.

My doctor suggested I call ENT secretary to find out when my results and appointment is ,she had no idea and would ask the Neuro IR team I call back three days later and was told they won’t be looking at your results scan results until January and if they want to see me they will send me a letter and when I shyly questioned this she said if you haven’t heard anything by the end of January give her a call back and shall find out .

I got off the phone stunned and that is how it’s been left wondering and waiting to hear should I be worried, is this really normal practice how to inform a person you have a aneurysm,is this normal practice to wait and wait to hear whether or not anyone will sit you down and explain what they this diagnosis really means and if they can do anything about it .

I really would be grateful to hear from anyone who can tell me if this is normal practice as I’m in limbo here .

Ps sorry if this not the right forum to tell my story .

[Nettiefour]

Where are you located, I'm in the UK, 2 years ago I started to loose vision in right eye to cut a long story short an MRI scan found a 14mms anurysm affecting my optic nerve, I was admitted that day and had surgery 4 days later.

Don't leave it ask questions, phone doctors, consultants demand to be seen, talked too

Take care and be proactive, I'm having my 2 year angiogram on Friday fingers crossed all is well

[54Apple54 in reply to Nettiefour]

Thanks for your reply;I’m in Bromley Kent , i’m Pleased to hear you have a positive story to tell .iI would like to think if I’m sure if mine was in a dangerous place like yours I also would of had a swifter treatment .

Good luck with your angiogram x

[Lyndaryan1]

Hi,

It might help if you contact PALS service in your hospital. All hospitals offer this service & in my case they were terrific at getting your information & very quickly. In my case I emailed them & on every occasion I received a phone call the next day with a detailed reply to my emails. I know some of the Consultants think they can be a nuisance but they are a service in place for YOU the patient. They seem to be able to get full disclosure of information that's once you've given them your consent to do so & if treatment is the next step they will fight your corner all the way through your treatment as well.

I think you would maybe feel much better if you got some answers & got information NOW on what's going to be happening & time scales??

Good Luck

Lynda

[54Apple54 in reply to Lyndaryan1]

Thank you soooooo much for your reply ,I was thinking of complaining but how and who to as I’ve no neurologist consultant s name other then the ENT s that originally saw me .i’ll ring his secretary I’m sure she can give me a name.

I’m so stressed as I’m moving my son up north this weekend ,I’ve not told him ,because he’s stressed with his move and the a new job and oh yes Christmas is just around the corner. Why couldn’t all this happen at a more convenient time of the year 😆😀

I keep thinking this is a dream and I’ll be sent a letter saying sorry false alarm your MRA scan showed nothing there - now that would be a most wonderful Christmas present.

I’ts really nice to know that there is this forums to get support as even though my husband is supportive he doesn’t know what it’s like to have this hanging over your head all the time ( sorry for the pun) .

I’m pleased I stumbled across this site and have found the reassuring support I need from other people that are going through similar situations

Thanks again for your reply.x

[Andersl]

Firstly, this absolutely is the right forum to discuss your experience with being diagnosed /managed for brain aneurysm.

Secondly, you need to persist in getting an appointment to see a neurologist. Several people on here have used PALS at the hospital they'e referred to. Also you could go back to your GP and ask them to intervene on your behalf. Another way, which was successful for me, was to email the consultants secretary direct and explain you'e been told you have a 15mm aneurysm etc but you havent had an opportunity to discuss what this means with a consultant. Could you see someone.

There may also be neuro nurse specialists at the hospital who you can contact.

I hope this is helpful. I'm sure others on here will advise too.

Keep in touch

[54Apple54 in reply to Andersl]

Thank you so much for your advice ,I was beginning think that I was expecting to much from the nhs

X

[cathliddle]

Thats exactly the same as what is happening with my husband . He also has tinnitus and went to enr. He has 3 aneurysms , 2 at 5mm and 1 at 10 mm . Waiting to hear from neaurolgist also , thought it would be really quick but it seems it's going to be longer with what I'm reading . We are so worried , he tries to hide it but I know he is . I cry a lot alone . Puts things into perspective, makes you appreciate each other . My husband is 50 and we live in Scotland. I'm telling him no news is a good thing , canni be urgent but I think it's nhs resources . Its a dark cloud over us , dont know a thing apart from he has 3 which his gp let slip while getting diabetic blood took . That was a week ago and no heard a thing . How long before he sees someone ? It's a living nightmare . Thanks for listening to me rant xx

[cathliddle]

Have you still not heard anything ? X