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AVM Survivors Network

The Process of Diagnosis Takes a Long Time


#21

I think the worst is waiting, not knowing. I know worse is still to come. But I’ve spent every day for the last month, expecting a phone call to set my next appointment and it hasn’t come.

Indeed, as you say, arguably nothing has moved forwards without me doing it. I probably should have questioned the referral time from GP (primary care doctor) to hospital, as that took 4 months. Then it was me chasing my MRI which led to the person in radiography setting my date “ooh, you’re urgent! We’d better get you in.” Yes, actually. And then I’ve lost another month just to report on the scan. Not impressed.

Great to have you guys :heart:


#22

We feel the same about you, DickD!


#23

Update! Phone call from ENT consultant… I’ve got an AVM (and explicitly an AVM as opposed to a fistula or a shunt, so not sure what that means) in my right occipital and what he thinks is a clot. He’s referring me to neuro surgery team at Nottingham by fax. Nov appointment with him cancelled as he is ENT, not neurovascular cons.

Great strides, post complaint, but I’m back in the undefined when-will-the-phone-ring-next? space.

I hope by sharing this, it will help somebody ages and ages hence. (Reminds me of a poem… anyone recognise the poem?)


#24

I’m glad that you at least know what it is now after a long waiting time of wondering! I hope the next phone call is much speedier than the first one! You’ll be in my thoughts to getting more answers soon


#25

Thanks. I think the simple things like being there for each other are proving to be the most helpful.

Now 2 weeks post “urgent referral” today, I’ve talked nicely to the answering machine of the neuro’s secretary 4 times in that fortnight and never had a call back.

Went to see my General Practitioner today and she was supportive of it being urgent and therefore agreed to nag the neuro team, too.

Meanwhile, head feels thick all over, like having a cold, or the front or back edge of a headache, and I’m feeling more dizzy… it’s a bit rubbish this AVM stuff, isn’t It? And I realise I’m only with my toes in the shallow end of it yet. There are lots of people here in much deeper and longer than me.

:slightly_frowning_face:


#26

Hi Richard,

I have just read your thread, from the beginning, and it is now Nov 11. Have you heard from the Neurosurgical team yet?

I have just been a member here for a short while, and am reading voraciously. Enjoyed reading your story.

I, too, have a 13 yr old son, (and another 11 yrs) and am in my 50’s. They were pleased I was still around on Father’s Day :laughing:

Anyway, continued luck.

Eb

ps: What is a “bruit” (I will look it up online)


#27

Barry, not really is the main answer. I have no date and its driving me mad. Ill keep you posted, though!

A bruit (French for “noise”) is the noise of a pulsatile tinnitus, heard through a stethoscope.

Richard


#28

I think the bruit is either the noise of my avm discharging blood at high volume into a vein (I think my transverse sinus) or blood squeezing past a sclerosis or clot. It sounds into my ear as pulsatile tinnitus and sounds rather like the washing machine on pump out!


#29

Went to my GP (general practitioner; primary) yesterday evening. Dizziness and more regular headaches going on. She sent me to A&E / ER. Very long evening in A&E but got to talk to one of the doctors. He wasn’t happy I’d been sent to A&E as I’m not yet in an “acute” condition but I learnt a lot more yesterday than any time since August.

Nottingham neuro use three categories, as far as I can tell:

  • Acute - in failure - needs admission immediately
  • Cancer referral - 2 weeks target
  • Everything else - 2 months consultation target

Today, had my first phone call from Nottingham! Hurrah! Consultation set for January, angiogram on the plan too, plus we need to look at my headaches and dizziness! Much better progress!


#30

Hi Pamm:

Welcome to our group. Your story is jam-packed with issues that you alone cannot fix. I’m sure your Son does not mean to be so difficult with you. It’s the AVM that’s making him say, act and do the things he does. He’s scared. You’re scared. Social Services may be able to assist you and/or your son. I had no long term or serious issues after my Gamma Knife Radiation procedure. Eighteen months after Radiation, my AVM is not detectable, praise God. Every outcome is different for everybody. Take care of yourself so that you will be able to assist your son. Wishing you and your son the very best.


#31

Hey Richard,

Wonderful news that you have heard from Nottingham, with a date set for your consult.

You’d think I would have known what a bruit is— in Canada our other official language is French. (and I speak it :laughing:). Oh well, I have an excuse…

Eb


#32

Latest update… I’ve got an outpatient appointment to agree treatment options at QMC next week! Hurrah! One more small step…

:blush:


#33

Guys,

Finally got my diagnosis today… brain dural AVM in my right occipital, reaching round my ear. Seems quite extensive. Plan is for a catheter embolisation, date tbc.

Excellent session with the radiology consultant at QMC today. Very considerate, deliberate man for whom I have the greatest respect. Very good step, after many slow weeks of early diagnosis.

Many thanks for all the support and comradeship in this community.

Richard


#34

This week’s update… letter from hospital… I’m on the waiting list and should expect to be admitted in March or April 2017, somewhat longer than in the conversation I had last week. And they’re cancelling my appointment in January.

So the NHS in the UK is free but unfortunately rather slow.

Good news, I’m feeling relatively well, having cut out the caffeine and chocolate. I’ve not had a headache for what feels like a couple of weeks or more and I had two days this week with no dizziness that I noticed. I did have one cup of coffee on Tuesday which took me straight back into dizziness and the edge of a thick head / headache instantly, so have learnt that lesson! No caffeine allowed, period!


#35

Thought I’d share one of my favourite poems, by Robert Frost. First published in 1916 so far as I know, so shouldn’t be any problem with publishing here. Frost was American, so I’ve kept the American spelling.

It feels a little bit relevant to us in this community, perhaps to many Ben’s Friends communities, though some may feel they were led down one of the roads rather than it having been a choice. Hope you like this as much as I do.

I personally see the poem as a commentary on the many choices we make in our lives, and even the smallest of choices being those that influence the whole of our later life; but it can be read in many ways, I think.

THE ROAD NOT TAKEN

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

At some point, we’ve all taken the road less travelled.

Richard


20 year old son with grade 4 AVM, CyberKnife at Stanford in January
Will I still be me
#36

OMG what a shock. So I’ve just been diagnosed with large DAVM and god only knows what else. The MRI scan looked awful. Had 2 CT scans last night and waiting for those results. Going in for a cerebral angiogram and really scared. Doctor said I have no choice I have to deal with it and depending on Angiogram results probably embolising. But I’ve read of people becoming damaged after the angiogram-loss of speech, paralysis etc. Can anyone tell me about their experience. I’m terrified!!! Also does anyone know what this part of the brain looks after…lateral and sigmoid venous sinuses…I have a ‘large and significant Dural AV fistula’ here. I’m really worried about neural damage.


#37

I have been seeing doctors and having tests for 8 months now and finally have all the results. It is a very long process. Now the question is surgery or wait.


#38

Hi All, Just got a letter from Hammersmith hospital saying that I am now on a waiting list! I was diagnosed at the beginning of Nov 16. Not sure how long the waiting list is but at least i’m on it. It does seem as though it takes ages and I must admit I can’t wait to have an appointment, just so that I can discuss things with the specialist. There was a list of questions to ask posted somewhere on here (I saw it a while ago), I Can’t seem to find it now I want it. Can anyone help me with where to look? Thanks Mandy


#39

Mandy,

Jolly good! Still some time to wait, potentially. I’m still waiting for an actual date. Last time I asked, I was pencilled in for beginning of March, then a month later I asked again and it had moved to end of March.

I don’t know which list you found previously, so here is a link to a number of “what to ask?” topics. Hope it helps.

Very best wishes,

Richard


#40

Thanks Richard, this has helped. Mandy