James 28

[James28]

Hiya everybody iam kinda new to all this after just being diagnosed with two cerebral Anyersums it would to here some feedback from anyone experiencing the same .

[Cas1960]

Hi James. I have just been diagnosed with two also. I am waiting for a date for coiling of the largest one first as they can only do one at a time. Have gone through a whole range of emotions and am really scared of the surgery. Have you been given a treatment plan yet?

[James28 in reply to Cas1960]

Hiya Cas I live in Northern Ireland and I was sent too a private Clinic in Dublin to have my Scan .

Unfortunately I have other under lying health issues I am also on Kidney Dyalisis 4 days a week so I've been told by my Neurology team in Belfast that I would be of major risk of surgery for the Anyersums so I don't know were that leaves me to he honest I opened you get some good news regarding your surgery just keep you're chin up ok 😊

[cat3 in reply to James28]

You might be wise to ask for a second opinion James. Ask your GP for a referral to a neurology consultant elsewhere. Different consultants can have very different approaches to neurological procedures, especially a less invasive one such as coiling.

So long as your scans have shown the aneurism to be accessible, a good neurosurgical team make take a very different view of the risks. Good luck. xx

[James28 in reply to cat3]

I think hat I should get a second opinion Cat it's all still very raw with me at the moment though so it is m

[cat3 in reply to James28]

It's not easy to get your head around I know ; and it sounds like you're already dealing with other health issues.

Do you mind telling us what the dialysis is for James ? x

[James28 in reply to cat3]

Yeah I've been a diabetic for quite a while now and I'd be the first to say that for a few years I didn't take my Diabetes seriously hence the problems I am having now like the dialysis x

[cat3 in reply to James28]

You bad boy ! (OK for me to talk though ; it must be a pain having to constantly watch what you eat).

Maybe the time's come for a shake-up on your health-care James, starting with the visit to your GP and asking for an urgent referral to a major hospital with the most reputable neuro team.

Please stay with us and keep us updated with how you're getting on. Cat x

[James28 in reply to cat3]

Well iam under the care of possibly one of the best hospitals in Europe in The Royal Victoria Hospital in Belfast .

I need to ask my neurology department what my options are .

[cat3 in reply to James28]

Sorry, I thought you'd been to a private clinic ; was that just for your scan ?

I'm just a bit prejudiced against private clinics since I had cataract ops at a private clinic and it hasn't been satisfactory ; I wish I'd opted for the eye hospital which, though it has a longer waiting list, has a great reputation.

So you're in good hands already, therefore no need to involve your GP. Ask for a consultation with a senior neurologist and find out the nature of the risks for coiling.

Being in possession of the facts can be empowering and can allay some of the fears we often harbour through lack of proper information.

Brain-related illnesses used to be a scary subject for me 'til I had my own, but now I just find the whole subject fascinating. And if you want some official helpful brochures from Headway, phone the helpline tomorrow (closed over weekend) ; they'll send them to you free.

The tel. no. is 0808 800 2244 (free call-office hours). xx

[James28 in reply to cat3]

Yeah I was t3feerred to the private clinic in Dublin initially for my scan but I am under the care of the RVH in Belfast .

[James28 in reply to Cas1960]

At the moment Cas iam having regular scans done so that looks like the plan for the time being although I do have a family history of Anyersums my father had a haemorrhage five years ago and also I've other family members that that have the same condition .

[TiredNan]

Hi James

Welcome from me. I'm a brain tumour survivor , so not quite in your league but glad that you found this place i find it a great support. hope you do too.

cheers

TN

[James28 in reply to TiredNan]

Hiya TN

Cheers for replying you certainly sounds like you've been through the mill . I am fairly optimistic that I will come through this but it's just hit me for six if truth be told .

[MXman]

Hi James and Welcome. No Anyersums for me so can't really comment on that but thoughts and prayers are with you. Nick

[James28 in reply to MXman]

Thank you very much Nick that's very thoughtful .

[Navillus]

It does hit you for six James. I felt the same. I had to have surgery to remove mass in my spinal cord 2 years ago and Only just been discharged when told me got 8mm aneurysm at M1 which is engulfing joint and on 3 major arteries. I don't know about you but felt like I'd been hit by a bus, felt numb walking out the hospital. Im so sorry your having such a tough time with the dialysis and other health problems and really hope they can sort something out for you regarding your aneurysms. I'm feeling less panicked than I initially was but still have days where it worries me more. How's everything going for you?

[Alibongo60]

Hi James, it was found I had an aneurysm four years ago and had stents and coils fitted. Although scared I felt surgery was the better choice than living with a ticking time bomb. Last year it was found the aneurysm had grown and whilst waiting for an angiogram I had a bleed, I had been told if the aneurysm bled it would be catastrophic, as it would affect my breathing and swallowing, however I have survived and relatively unscathed, the day after my bleed I was taken to theatre and had the aneurysm recoiled these surgeons are amazing, they are the experts , so have faith I'm sure you will be fine, xx