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AVM Survivors Network

Third Stage - Degradation Post Embolisation?


#21

Ok. Not quite sure how I feel about today.

Saw neurosurgeon for the first time today. He doesn’t think my symptoms relate to my original DAVF but is of the view that to have any consequential change or another AVM is “vanishingly rare” to the extent that it felt to me as though he was dismissing any symptoms as wholly unlikely and therefore do nothing.

I’ve come away with a promise of a wider scan, by means of an MRI… So we get to look to see if there is anything going on in my head, whereas an angiogram would have focussed on right hemisphere only.

I asked about inheritance and he simply said it hadn’t been demonstrated in medicine, so dismissed that notion as pertinent to me, as well.

Another thing he suggested was that sometimes people have symptoms for things that you just can’t see a cause for. e.g. lots of people have migraines but when scanned, there is nothing out of the ordinary. So, I think he is saying “ok, you’ve got some symptoms but last time we looked, everything looked perfect, and even if we look again, we may see nothing.” Something like that.

So… kind of positive about an MRI, as I was suspicious that the angio would just look in the same place as before and it doesn’t feel like it’s in the same place as before.

Kind of positive that he is ok with me carrying on life as normal, driving, etc.

But bothered that he is judging me on statistical probabilities of what could happen rather than thinking I could be the one that actually has something further to do.

In regard to my son yesterday, a much more welcoming, supportive reception from the paediatrician, who again thinks the likelihood of him having something is “rare” but prepared to take the signs we can see as indicative of something to investigate. We have an MRI with contrast planned there and a review in a few months. I think her plan will be to keep him under review for a few years.

So… very satisfied with the paediatrician; quite dissatisfied with the neuro. Maybe I’m just a hypochondriac!

Meanwhile, I’m going to ignore my symptoms and carry on life as normal, on the grounds that maybe I’m just taking a while to feel better. I’ve no idea.

Grumble, grumble… :wink:

Richard


#22

I had furrowed eyebrows the whole time I was reading your experience with the neuro - that sounds awful! Its really frustrating to hear that he undermined your concerns. I’m glad that atleast he is giving you an MRI and will have a proper look.

Glad your sons pediatrician was much nicer and that necessary steps are being taken to ensure your son is monitored just incase and he’s having an MRI soon :smile:

Many of us here including you and me were diagnosed prebleed, not because we’re hypochondriacs but because we listened to our bodies and didn’t suffer in silence! Regardless if this is or isn’t simply “one of those things” - you have taken great and positive steps in response to responding to your gut feeling and symptoms. You didnt let your concerns consume you but you did take action - you should be proud of that, its not an easy balance to reach.

I’m really happy things are moving ahead. I would still notify your neuro if any concerning changes in symptoms occur. And no harm in nudging (or nagging) your way into getting your mri brought forward if you feel it’s too long a wait.

For now I think you’ve got a briliant attitude, to leave thoughts on it all until investigations start unless any concerning changes occur. I will try to do the same! :raised_hands:

Love,

Corrine


#23

Disappointing response form the neuro, that’s for sure. Great to hear that things went much better with the paediatrician. The fact the scans are occurring is a plus. The dismissive attitude is annoying, and has to be frustrating. Keep listening to the body! You’ve got such a great outlook, I’d be blowing a gasket vs. grumbling. John.


#24

Corrine, John,

Thanks for being there. I’ve had a rubbish couple of days and find it difficult to be positive about Thursday or Friday. Your comments do help.

I don’t know if my blood pressure was up yesterday but after saying “I’m going to ignore it and carry on” I was just so much more strange in the head yesterday than normally. I did have a stressful day yesterday.

I think I’ve let my bp go up again today and I would say today I’ve got a full head headache. Upper half of my head hurts. This is such a stupid thing to think but I almost just want to have a bleed and be able to get to Accident & Emergency and say “it’s now doing this… help” (or more likely have someone say it for me). At least, what I mean is that I understand people when they say they feel like that. The idea of waiting even longer to have anyone take a look is quite distressing. I’m quite sure it will be 6-7 weeks before I get to an MRI and if past performance is anything to go by, another month before any doctor looks at the results.

If I believe the doctor, there is nothing wrong. Just resume life as normal. Or at least, the probability of there being anything wrong is “vanishingly rare”. Lovely. I’ve always liked being different – I choose my car because of not being humdrum; to some extent (less these days) I choose my clothes to not look humdrum – but there is no advantage in being vanishingly rare in the medical world, eh?

And I am convinced I’m not as bad off as some here. My publicity about my condition doesn’t mean I feel more poorly than people who are more reserved. I’m conscious that I’m being loud or public here where propriety might say just keep schtum. So I apologise for grumbling about little.

It’s a great thing to have a community, such as we do here, to grumble at/with. It is kind of others to just be there.

Grumble, grumble.

Love,

Richard


#25

“maybe I’m just a hypochondriac!”

That’s a thought that goes through my head every day along with “am I really feeling that or do I just think I feel that”? It really gets mind boggling sometimes.
I agree with @corrine that we are in tune with listening to our bodies and we aren’t going to suffer in silence…eloquently put and very refreshing statement. (Thanks @corrine!)
Richard, I applaud you for continuing to work! How do you do it? I was off work for 6 months and recently went back for 1 month and couldn’t handle it. My lack of concentration coupled with brain fog seemed to hijack every day and it was very difficult to get through then I’d have intermittent vertigo episodes that really made it miserable. Plus I work 10 hour days and my job is a 1-1/2 hour drive each way with no public transportation or carpool options. Driving is super scary for me (and definitely a whole other topic). The company I work for has been incredibly flexible and has a great leave policy for extended medical absences. Starting yesterday, I’m off work again but they’re allowing me to work part time from home. I still find that I battle being able to concentrate for longer than about 20 minutes at a time (I’m a computer programmer, so concentration and focus are really important).


#26

Donna,

Thanks for this. We are in a similar place, though I am lucky not to have any brain fog. I think the worst feeling I have at the moment is what feels like brain pressure which is unpleasant, uncomfortable and potentially worrying. I had a headache much of yesterday and woke at 5:30am this morning with a rubbish head. I was considering whether I needed to go and see the GP (primary care doc) this morning or report straight to A&E but I took a couple of paracetamol, went back to bed and started work about 2 hours late this morning and was SOOO much better, I can’t tell you! So, I should remember to start with the basics before thinking the world is about to end!

My work is much easier than yours, too: generally 7.4 committed hours a day (plus whatever life throws at us) and 30 mins to 50 mins commute if I drive. I can get to both offices by public transport, too, though it basically doubles the time.

I work in IT and I am undoubtedly an out and out analyst. I’ve not done programming other than as a hobby or fiddling with spreadsheets and SharePoint lists for perhaps 20 years but my job still requires a good degree of thinking. As I say, I’m lucky – my brain basically works. I had a couple of weeks last year working short days and I had 3 weeks in total off after my embo, that’s all I needed. Plus this morning and perhaps two other short mornings. It’s the stuff above I want to get checked out to make sure I’m properly, all right.

It’s good to share stuff with you.

Best wishes,

Richard


#27

Ok, guys, today’s story.

I was due for an angiogram next Tuesday but following the discussion with the neurosurgeon a couple of weeks ago, that was to be postponed and propose an MRI instead. However, today was my pre-op chat for the angio (and I’ve not received a reschedule letter) so rather than ignore it, I went through with the pre-op and then discussed the problem / options with the nurse.

Our plan is that I go in next Tuesday, have the discussion regarding symptoms and where and how to scan. If angio is the best thing, I’m there and ready for an angiogram. If an MRI is the best step, they’ll try to get me an MRI done on the day! Hurrah! So, no more waiting for weeks. Hopefully the right scan on Tuesday and clear direction as to next steps.

Howzat? Another Easter in hospital!

I’m pretty chuffed (= happy) about that. I just hope the plan comes off.

Hope everyone else is having a good day, especially @natalie89 – thinking of you, Nat for tomorrow.

Love all,

Richard


#28

Good luck!


#29

Great to hear Richard, happy all those things are lining up! I’ll be thinking of Natalie89 as well tomorrow. I’m going to use chuffed at work tomorrow, should get some looks! Take Care


#30

Ha ha! Chuffed is an interesting word because it has two opposite meanings… Either very satisfied with something or very dissatisfied with something. In the latter, I’d say “chuffed off” is the dissatisfied version. e.g. “I’m a bit chuffed off about…”

Enjoy!


#31

Ok, so I thought I should update my story a bit. This was how the world looked on 27th:

Since then, a couple of things:

The day after my procedure, the neuro’s letter about my early March appointment came through, saying that he didn’t feel an angiogram would show anything. I felt he had misunderstood what I had described as my symptoms and the letter to my care team felt misleading, so I wrote a letter back to all of the doctors on the letter to set out my symptoms, one by one, in priority order (so far as I know).

A week later, I think, 2nd April, my wound from my angiogram was getting more sore day by day and in the evening of the Monday, exploring the wound and bruising more, I found a pulsing lump in the wound! Spent the night in A&E getting that checked out but the doctor I eventually saw (about 01:20am) was convinced it was just the remnants of a bleed, not an aneurysm or pseudo-aneurysm, so that was good.

In the last week, the wound has got better and I’m not 100% comfortable but much, much better than a week ago.

I was remarkably more dizzy and more headachy than I remember from my angiogram last year. At least 2-3 days of head feeling poorly, if not 4 or 5 days. And 1-2 weeks of feeling more dizzy. I did feel as though the contrast material had had an adverse affect on my balance for those 2 weeks, a bit like Heisenberg’s Uncertainty Principle / the Observer Effect, though I assumed it was temporary and to do with the foreign material. I’d say I’m back to normal again now.

Today, I’ve had a letter through, inviting me for an MRI next week of what sounds like my inner ear.

So… I hope a bit of progress, prompted by the multidisciplinary meeting perhaps last Tuesday.

Not sure why I’m sharing at this level of detail but I always aim that one day someone here finds my ramblings, my experience helpful to them.

Richard


#32

Appreciate the detail Richard, shows how we sure have to be our own advocates, clear and concise to care providers. Keep at it! John.


#33

Really glad to hear further progress being made with a follow up MRI :relieved: and as John said - your detailed progress updates remind us that pushing and prodding when we follow our gut after we are first turned away does pay off! It also shows your great personal strength on your part which I am sure inspires others too and not only me.

Love,

Corrine


#34

Ah! You’re good people!

Interestingly, feel absolutely fine this weekend. No idea why. I can hear wild whistling in my ears and I know I can hear the pulse at night but for some reason my head feels really good. No pressure or dizziness. Who knows? Maybe I just needed a year. Maybe it’s just this week.

Got a letter from the interventional radiologist on Saturday to say the angiogram is all clear and I should take heart from that, which I have to say I should.

Weather forecast (and I shouldn’t say this in front of John, perhaps) is over +20°C by Wednesday. Can you believe that? That’ll be fantastic!

Thanks for going through this with me.

Richard


#35

All

Update…

I’ve had an interesting time since April. As I posted above and elsewhere, I have weeks when everything feels pretty good and weeks when I’m more conscious of a pulse, slightly strange pressures in my head and maybe a bit of dizziness or odd feeling in the top of my head. I also gained a bit of vertigo last month. But overall, I feel passable and not to complain. A bit of mind over matter and all that.

Further to the record above, I had an MRI in May and a recall MRI in June (I think). I think I’ve been in the machine 2 or 3 times this year. The proper drag has been getting the results. I followed up in August to be told it was not even “reported on” (in other words, the radiologist hadn’t put pen to paper or finger to keyboard to say what he saw). 1st September it should be with the consultant neurosurgeon.

I followed up with the secretary in late September to be told that the report had been with the neurosurgeon since the end of August and while she would naturally not discuss any of it with me, she listened to my request to get him to look at it.

Today… letter from the neuro, dated maybe the very day that I spoke to the secretary to say something along the lines of “looks much improved” since my pre-embolization MRI but something about an apparent low flow present. Not enough words in the one sentence meant to convey diagnosis to actually make sense but sounds to me like I’ve not been imagining my symptoms for the last year but that there is something to look into.

Darn!

In some regards, I had got into the mindset that it was just my imagination (though I can definitely still feel a number of symptoms) so in some ways if I was to get a letter from the neuro, I was hoping it would be a “NFF” (no fault found).

However, it is much better for there to be something visible there because it means I’m not going crazy and because we could perhaps do something about it.

So… darn.

Now need to wait for the multidisciplinary review at a different hospital and then, presumably another letter or invitation to a clinic for next steps.

My journey through this stuff continues to be remarkably slow, though I have been interested to let it flow at its own pace, just to see how long it would take. I absolutely believe in the principle of a free-at-point-of-use NHS but you have to agree, 11 months to the week from “I feel less well” to merely “hmm, yes, it does look like there is something there” is potentially disasterously slow. I don’t know if it is purely funding or poor management or laziness or what but I think there is definitely an issue that needs sorting there.

Thanks for listening :slight_smile:

Richard


#36

Hey DickieD…I found the bit about the brief deafness interesting. It has happened to me twice in the last 6 months. Hearing on the left side (my embolization was on the right side) suddenly disappeared for about 24 hours. It felt like I was wearing an ear plug. When I started to regain hearing everything sounded high and tinny then really loud ear ringing. I mentioned it to my neurosurgeon and he said “hmmmmmmm…interesting”. Since then, he has placed a stent in my left side near the base of my skull and I’ve had no further hearing loss. He said all of the symptoms I was experiencing (dizziness, hearing loss, range of neck motion, headaches at base of skull etc) were due to restricted blood flow thru the old AVM feeder veins. These symptoms have mostly resolved since the stent. I never feel 100% but I figure I’m about 75% of what I was pre AVM which is a victory for me. I’ve just learned to tone it down and rest throughout the day. Maybe you’re trying to do too much. Hope you’re feeling better soon and your waiting times are brief. You’ll know when your ready to drive again.


#37

Jenny!

This is really useful information! And it does seem likely, so could be of use to anyone with a DAVF. There does seem to be a correlation between having treatment in this area and these residual symptoms. Really helpful, thanks!

You need to re-read the time stamps on this conversation again. I only laid off driving for a week. Post 1 was November last year. Only yesterday did I actually get the first step of diagnosis back from the man I was referred to back in November.

Very slow.

Thank you!

Richard


#38

Further update today. Got back from a few days away and have a letter from the neurosurgeon…

Despite the finding in a letter last week that there was a hint of something amiss (but not very clear) in my summer MRIs I’ve come home to a letter to say that discussing my images with the neuroradiologists & maybe other disciplines in a team meeting, the conclusion is that I’m all fixed!

Now, I don’t know whether that’s because the angiogram result in the spring is being used as the only real evidence (and the MRIs in the summer are being discarded) or whether the apparent anomaly reported in the MRI result last week has been considered (and is properly identified as of no consequence) but I think I have to take it that whatever side effects I’ve got are just side effects. Not indicative of danger.

What I’d really like is decent communication or feedback as to what was found. However, I know that I am in a better state than 99% of neurology patients, so I feel obliged to just shut up and accept the slightly random messages as solid indication that I’m absolutely fine.

So… end of story, I think. All sorted.


#39

Richard,

Please never feel you should “shut up” or undermine your issues regarding your AVM and experiences. Your feelings regarding all that has been happening are completely valid. Many of us benefit from your posts and you sharing your experiences and I’m really grateful for that.

No one here should feel like they must internalize their feelings because this is a judgement free zone. There will always be someone here with a relatively better or worse situation.

Regardless of my deficits - I am actually relatively “better off” currently than some who despite experiencing no deficits or less extensive deficits or who have had problem free treatment, are experiencing more severe emotional trauma, anxiety or effects to their personal life. There are people who look like they are living the dream and they are actually extremely unhappy or those who seem they are in a much worse situation who are actually much happier in life than us.

I would definely feel unhappy about being left to wait around much too long for news on your situation and affirmation on your concerns. I would also be frustrated with having no answers regarding the issues you’ve been dealing with.

Sorry for all the waffling. As you know - I’m awful at keeping things short.

Love,

Corrine


#40

:heart:

When I say “shut up” I don’t mean on here. I mean nagging back at my neurosurgeon. It just feels like it drags on when I do. I do think that a more positive mental attitude helps with recovery and some symptoms could be in the mind rather than in the brain. If I ignore it, I get on better. But there are circumstances where my brain feels weird, potentially at risk still.

Anyway, I’ve dropped a letter back to the neurosurgeon to see if he will explain the two letters better.

Meanwhile, I’m going to stick with the idea that I at least not in danger. Always the best way to look at life, if you can.

Catch you later,

Richard