Brain Aneurysm Support Community

Family History of Aneurysm and AVM

I’ve been experiencing neuro symptoms of recent onset - left hand numbness, dizziness, stiff neck, right headache, right tongue and face numbness, tinnitus, right ptosis and double vision on left gaze. Symptoms are worse when BP high (eg, 180/105). My BP fluctuates so it can be as low as 100/60 (same day).
An emergency CT scan last week showed no bleed so I was discharged the next day, with the above symptoms and await an MRI/MRA. It was requested by the emergency on duty physician.
Parents died at age 61 and age 66 due to catastrophic brain haemorrhages. (Mum - basal ganglia AVM and aneurysm.)
My CT scan showed bilateral basal ganglia calcification.
GP sent letter to neurology but they bounced it back saying - if MRI/MRA shows anything, refer to neurosurgery. Do neurologists not see patients who might have a brain aneurysm or AVM?
The other question is - who’ll assess the results? It’ll probably be the general physician who has no expertise in neuro field. Should I push for neurosurgeon referral so that they at least look at results, even if they don’t want to see me face to face?

I was feel like I’m going out on a limb with different countries as I have no experience with medicine outside of the States. That being said …

A neurologist deals with CNS issues and the aftermath of hemorrhagic and ischemic strokes, some forms of arthritis, TBIs, etc. no surgery required

A Neurosurgeon deals with all things with brain and spinal column, including injury, infections, degeneration of spine. When my issues cannot be resolved with surgery, I’m sent to the neurologist.

The Radiologist is the one who’s job it is to accurately read the images. I’m thinking this ends up being more subjective than it should. The Neurologist or Neurosurgeon reads it for themselves.

I certainly understand your concern given your family history and new symptoms. While you are waiting for the MRA results, did anyone tell you some of the protective steps you can take, like not lifting heavy objects, straining yourself, avoiding constipation, or importantly in your case, controlling your blood pressure? When they did an MRA for me, the radiologist interpreted the results and sent the report to the neurosurgeon who discussed it with me. This was a followup after my clipping. You may have to be assertive and keep asking questions if you have any doubts. In the meantime, please take care of yourself and try not to stress too much!

I think as soon they have an MRI results there will be more clearity if there are any problems in the brain .
One time I remember one of the members here wrote that doctors in ER missed existing bleeding .

If MRI shows something you will be referred to neurosurgery . If it doesn’t - push your doctor to give you referral to neurologist whith whom you can discuss that episode and find out what is going on…

Hi Kate3,
They just let me out without advice. I’m on annual leave thankfully so trying to chill out. But get stressed when they won’t respond eg, they took a chest x-ray when I was in A+E but won’t reply when I ask for results. It’s my body, for goodness’ sake. I’ll write a letter rather than an email.
FeeFo

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Hi gk79,
I’ve had the headache + neuro symptoms for weeks now. Still have the R headache and R face numbness as I’m typing. I’m also hypothyroid (just daignosed) and think there’s a link there also. If I put the family history, symptoms and thyroid issues together - I convince myself I’ve got one. But the drs seem to pick snippets and not see the whole picture, despite my repeating myself. I’ll see what happens next week.
FeeFo

Thanks Moltroub,
I’ve been told I won’t get a neurosurgeon appt if the person reading the results thinks there’s nothing there. I had an MRI/MRA with contrast for my right tinnitus in March and waited 8 weeks for the results. They initially said they’d check for an AVM/aneurysm at the same time. When the results came, they said ‘you didn’t get contrast and you didn’t get checked for an AVM/aneurysm’. I definitely did get contrast + feel like I’ve wasted 8 weeks. I could have contacted my GP to ask for a AVM/aneurysm check, if ENT had given the correct info.
FeeFo

8 weeks sounds weird. Usually radiologist sending it to the primary doctor or whoever referred the MRI in about 3 days maximum .

I had a mri when my aneurysm was found. That afternoon they scheduled an angio and I was required to stay overnight. I already had a neurologist who treated my migraines for the past 20 years. He came to the hospital and told me I would need to see a neurosurgeon first. He said where my aneurysm was most likely they could not do surgery, so I then would be referred to a Neuro - radiologist. Which I was. You will find out that a neurologist can treat neurological symptoms of disease. Neuro surgeons and Neuro radiologist are not neurologist totally different course of study. I thought they would have to be a neurologist first. They do not. So they each can only answer questions about what they do. Frustrating you cant get them all in the room at the same time. You have to be your own advocate. I would keep contacting your Primary doctors office until you get answers. You need answers esp. your family history. Take care.

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Fee Fo, Do you have a patient portal in Scotland? That may be the way they communicate with you instead of calling. If you do, send them an email via your portal. Here in the States, they respond rather quickly. Keep us posted!

Hi gk79,

It’s even more weird. I had my 2nd MRI/MRA on Monday. I explained to the radiographer about the missing results from the March one and that ENT were saying I didn’t get contrast. She said - the March results are there, you did get contrast but you don’t need those results as today’s results supersede the March ones’. I’m going to log a complaint as something’s not right.
She said the radiologist would look at Monday’s results and report to ENT (even though I was discharged from there). Murky ++.

Hi Moltroub,
No we don’t have a patient portal here. The most we get, if we’re lucky, is a letter eg, ‘no new changes’ or ‘nothing worrying’. It’s like trying to get blood out of a stone, trying to get in-depth info. They get defensive if you give them probing questions. (This is my experience of the breast clinic.)

Hi BA2005,
I hope you are well and healthy. It must be scary to both you and your family when you had your diagnosis. I’m a fighter so will get an answer from them. My prayers are with you and your family x

Yes it is strange situation . Hopefully on Mon they will let you know what’s going on …

FeeFo, sounds like you have a good GP, get them to get the information you’re wanting. Maybe they will speak better to another doctor

I opened my mail today and saw a letter for a CT scan angiography booked for a fortnight away. No letter or call as to why I was getting this so saw my GP. She told me that I have a 1mm protrusion on the clinoid segment of the left carotid artery. The radiologist thinks it’s an infidibulum. There’s also a loop of the small aica close to the 7th/8th nerve. So I wasn’t imagining my tinnitus! I’m off on annual leave so just going to chill out. This is all I wanted - some clear cut info.

I’m really glad you’re going to enjoy holiday and received some news. Appears that the medical community could use some better communication skills. Good thing your GP is top notch!