3 months after a bi-frontal craniotomy (a “routine procedure”) for a right frontal dural-arteriovenous fistula on the surface of the brain above my right eye, my recovery seemed to be going full steam ahead. 32 staples over the top of my head taken out, hair regrown, energy back to where it was. None of the symptoms which had lead to the discovery of the AVM: pulsatile tinnitus, pressure on the left side of my head, temporary hearing loss - all gone. However 2 weeks ago, I started waking up every morning with pressure on the left side (which would dissipate once I was up and about) and tingling on the crown of my head. it got so bad that I was scared to go to sleep, knowing I’d wake up to intracranial pressure and a weirdly fizzing skull. Took myself to the Emergency department of the hospital where I was operated on - they did a CT scan, blood and urine tests for infections - they couldn’t find any reason for any concerns - everything clear. And yet the symptoms persist. Scared and at a loss, and not really at all reassured, am now thinking I’m going to have to bully my GP doctor into referring me for an MRI scan or something. My first post neurosurgery follow up appointment isn’t until May - our wonderful NHS in England is stretched to the limit but so am I with this tingling head and scary pressure in my head every morning. I am wondering if anyone has had a similar experience and could offer any advice?
Only you know whether you’re worried about your symptoms (and therefore whether to go and pester either the GP or neurosurgery or go straight to A&E or watch and wait) but I had similar things, though I “only” had an embolisation.
My DAVF was in my right occipital, discharging into my transverse sinus, so quite “near” to flows past my ears and possibly affecting my straight sinus and therefore cerebellum area. Different area than you.
I would say I lost my pulsatile tinnitus post op, but for some reason I gained a bigger, louder “normal” pulse that I could hear. That made me worry that everything was not fixed. I retained some dizziness or weird pressure feelings in my head. Over the first three months, I felt a bit better, then felt that I had plateaued. About 6 months post op, I had a feeling of regression – more weird pressure sensations – and then a week when I had a bout of more serious dizziness and I stopped driving again. Not surprisingly that sent me back to the GP and I had to re-join the queue to get to neurosurgery again, a six month wait.
11 months after my embolisation, I saw a neurosurgeon and it took a further six months of scans and re-scans to finally get the message that near enough “everything looks fine”. Throughout the whole period, I had times when I felt head-weird, some weeks more concerning to me than others but i also had weeks when everything felt ok.
I would say you’re doing the right thing to ask the questions but probably it is very early in your post op recovery and it will take much longer for you to settle back to feeling more normal. If ever you get a significant issue, go straight to A&E or to your GP if not so worrying. A&E only want to see you when you’re actually having a stroke but if you feel like by the time you get there you might be having one, its worth setting off and being in the right place if it really feels that bad. However, if not acute, best to talk to the GP or out of hours service who can help decide whether to go on to A&E or prod the neurosurgery team.
However, I think a lot of it is in our minds and we exacerbate things by monitoring ourselves too closely. In many ways it is better to trust the advice you’ve been given that the CT scan looks good and not to worry. I’m sure that it is finally giving up on worrying about my head that has helped me move on. It still feels weird from time to time but since I can’t persuade the doctors that there is anything to do (and if they can’t see anything on a scan, there’s no way they can do anything to it).
I wouldn’t really expect an MRI to show stuff that a CT scan doesnt: they are both used as detection methods. So by all means ask about an MRI but the message may well be that they don’t expect to see anything if the CT is good.
I’ve been there. By every means, if you get something significant, treat it with the urgency it demands. But otherwise you may still be recovering and the recovery journey is not a straight line.
Hope this helps.
Very best wishes
It was really reassuring to read about your experience, many thanks for sharing.
What has really resonated with me is your advice not to monitor health too closely. I’ve been lucky enough to enjoy reasonably good health for the last 50 odd years, never had a surgical procedure, and my job relies on me being fit in mind and body, so the discovery and treatment of this AVM has been a huge shock.
Also, when I first started experiencing the symptoms, the GP told me that the problem was excess wax - my ears merely needed syringing; paranoid hypochondriac that I am, I (luckily) refused to accept that diagnosis, went for a second (private) opinion, and lo and behold my fears were justified and I ended up having brain surgery. This severely shook my trust in medical professionals, but having experienced excellent care once in the hands of the NHS neurosurgery team, I should know to trust the technology - they can’t treat what they can’t see, as you said. How lucky we are that medical science has moved on from what it was even 30 years ago.
An active imagination and being cast adrift without monitoring (next appointment not till May) and any real information on what one might expect also doesn’t help; which is why it’s so comforting to hear from people like yourself and to be reminded that the recovery journey is not a straight line - I naively thought that everything would be completely back to normal 3 months after the op, as my consultant said that I could probably return to work after that period - which I have.
Thanks again, and I hope that in your case everything is still looking fine.
Hi. I didn’t really welcome you to the group! Welcome! I’m doing well, thank you.
Almost everything you say reflects my experience, too. Interestingly, I went to the doctor for something in late 2015 and as an aside, asked him to have a look to see if I had excessive wax in my ear because I felt my hearing was a bit dull and actually because I could hear the beginnings of what turned out later to be my pulsatile tinnitus! He had a look for wax but there was nothing remarkable going on. I carried on as normal; by the new year of 2016 thinking it was getting louder and did a bit of Googling to see if worth going to the doctor, but found nothing worrying enough to bother; by April 2016, it was definitely louder and I discovered the term pulsatile tinnitus and arteriovenous malformations! When I went to my GP, since I could hear my PT in both ears (as it was whooshing along both transverse sinuses) she referred me to ENT for tinnitus. But fortunately between me and the ENT consultant, I said the right things to him and he recognised what the problem was. He had to go and find a stethoscope but when he plotted over my head with it, he settled over my right TVS and could hear the whoosh himself.
It is fair to say medicals deal a lot in probabilities and will start with a less invasive, less expensive, more common diagnosis if that appears to make sense, so I do get why AVMs are not thought about often.
I would say recovery, even from an embolisation (at least with however much glue I had) takes at least a year, maybe two. Effectively, your brain has been re-plumbed and areas that you’ve got used to with overly high pressure are suddenly changed and areas that were starved of pressure suddenly have normal arterial pressure going on. My interventional radiologist was quite clear it would take some getting used to, though I don’t think he ever suggested how long it would take.
I’m really encouraged that you’ll consider chilling out and waiting a bit more. I would never suggest you don’t go to the doctor if you’re concerned – always seek advice when you need it – but I hope that you’re just looking for too much resolution too soon. 3 months post craniotomy is very soon.
There are things that can need looking at – so you’re right to be switched on to a bit of brain swelling, etc. – so whenever you go to see the GP, expect them to do the iris reaction test by shining a light in your eyes. It sounds so basic but by testing your reaction time, it can indicate raised intracranial pressure, or normal / nothing-to-worry-about-immediately kind of result so you can be chilled again without MRIs or CT scans.
So, chilling about it is good for you. Do it. But go and see the GP if you have any concerns or go to A&E if anything significant goes on. Meanwhile, try not to analyse it too much. I over-analysed and it doesn’t help.
Very best wishes,
Great conversation from both of you. I say this as I have been in a very similar situation to you Nicky and your fears are real. I also agree with Dick 100%.
I have a HUGE issue with pressure specifically behind my eyes, at times I’m very tempted to dig my eyes out with a teaspoon, the pressure is just SO intense. I went to the dr and was told 'Well, just don’t laydown for so long…" Like WTF. That’s not an answer as far as I’m concerned.
As Dick states a CT will show changes, an MRI will give a clearer picture, but a CT will still show. And again similar to what Dick says, my situation is a little different to yours. I have a VP shunt that diverts the CSF from my skull to my peritoneal (Intestinal cavity) so I already have known issues with intracranial pressures, which are being managed. Well, Sort of.
Nicky, I can totally relate to the situation that '…severely shook my trust in medical professionals…" as I was told for many years that I was exaggerating symptoms, ‘Ohh things can’t be THAT bad… …. we can’t find anything…’ That was until they did and once you’ve been through a situation like that I don’t think we are being a ‘paranoid hypochondriac’ we simply become hyper sensitive and hyper vigilant.
I also agree with Dick that 3 months is early days when it comes to neurosurgery, we ALL wish that by that time things would be back to normal, but I can assure you that is not the case for many of us. I say this as I tried to push my recovery… …ahhh don’t do that… ….I pushed too hard, too soon and did myself more harm than good. As I’ve said to others “This thing called recovery from neurosurgery is a marathon, not a sprint” symptoms seem to ebb and flow, and even years later I still have weird sensations. I now look more for a progression of symptoms. For me headaches are now ‘normal’ (if you can call them normal) I have them everyday, sometimes I have tingles in my hands and feet and at times a queezy stomach. But if that progresses with visual stars and vomiting, for me, it’s time to act. Those are my signs and I have learnt, which symptoms I can manage with meds and rest and which symptoms are a sign to act. BUT it has taken time to learn this. Initially, every ache and I was like “Is this it?” I’ve lost count of how many ‘near’ hospital visits I’ve had. But again as Dick says “…If ever you get a significant issue, go straight to A&E…”.
So I’ll say it again, “I don’t think we are being a ‘paranoid hypochondriac’ we simply become hyper sensitive and hyper vigilant.” and that’s NORMAL. But over time we learn our signs of when to act.
Merl from the Moderator Support Team
Your fulsome response was a welcome in itself, and I’m going to be quoting some of it verbatim at my GP, the iris reaction test for example; her initial reaction when I told her I needed an NHS referral for a dural arteriovenous fistula which had come to light on an MRI “OMG, that’s sounds really serious, what is it?” - as she looks it up on doctor google, whilst refreshing in its honesty, was not exactly what I wanted to hear…
But I have breathed a huge sigh of relief and chilled out considerably having read your and Merl’s experiences and words of wisdom, and consequently slept well last night without the fear that my head might explode on waking up, and even possibly noticed a lessening in the morning head pressure and the weird cranial tingling…?So thank you… and the fact that you are doing well is a beacon of hope for me in itself.
Thanks Merl for sharing your story; the huge anxiety and also the physical symptoms I was describing have definitely reduced since discovering that others have been where I am and are still here to tell the tale - so reassuring - like that moment when you come round from the anaesthetic post neurosurgery and discover that you still know your own name and DOB!! The power of the mind…
There are certain phrases you and Richard used that I shall be clinging on to: “marathon not a sprint” “hyper sensitive and hyper vigilant” “recovery is not a straight line”.
Thanks again for your empathy and for this network; I’ve never had cause to use one before - it does what it says on the tin. I feel supported.
And all the best with regard to your own health - my symptoms pale into comparison with what you have and are going through - feeling rather humbled.
You’re very welcome! We all go through this thing scared witless and it’s the least I can do to encourage or calm newcomers in the same way others helped me.
I have to say I had mixed experiences with GPs. I don’t think I’ve met one who didn’t know about AVMs but different people have taken different levels of interest, so try each one out and find out who is interested and motivated enough to find out with you what it is all about. One of my visits to the GP, I got a junior doctor on rotation and she was rather excited to understand my condition. Since I knew my pulsatile tinnitus could be heard by stethoscope, she asked if she might have a listen. “Absolutely textbook!” She declared. “Thank you. I don’t really expect to hear another one in my career but thank you!”
Glad to know you slept better. Keep up the great work. Restart life and put it behind you.
Very best wishes,
As a performer, I often do role play for medical students for their exams/OSCEs - communication skills/breaking bad news etc, so feel quite justified in my opinions on how patients should be treated and what level of care they should expect from medical professionals.
I have restarted and am so (pathetically) grateful for the support you have given me - you’re probably used to it from all the newbies who turn up on this forum!
Thanks again and enjoy your Sunday.
Get thee behind me, AVM.
Nothing pathetic about it. Two years ago, I needed it just as much as anyone. It’s even better to give than to receive.
Nicky, I can assure you we ALL go through that ‘OMG’ stage and it can be SO isolating. That knowing that we are not alone is what has lead me to Ben’s Friends too and that ‘PHEW’ moment is almost as big as the ‘OMG’ moment, and that is why I am here. And to quote Dick D “Nothing pathetic about it.”
You are not alone because we have been there too.
You state “…my symptoms pale into comparison with what you have and are going through…”, I worked in the disability sector for years and as bad as my situation has been, I have worked with those in a situations 10x, 100x, 1000x worse than mine and it really brought me back to earth just how bad things can get. I’m often saying “Enjoy today, because tomorrow you could walk out your front door and get hit by a bus. You never know.”
Merl from the Moderator Support Team
Trusting the wisdom and knowledge on this site more than I do that of my own GP, (who I’m seeing on Monday to update her on what’s been occurring) I was wondering if I could ask if you knew there are any rules about driving and flying?
DVLA made me send my license back to them, no driving for 6 months post op; I presume that’s on the advice of my neurosurgeon, which is fair enough and I have heard that’s standard post craniotomy - though my own GP was clueless on this point “Whatever the surgeon says.” I think you said you drove and then stopped after experiencing dizziness…
Also - flying; neuro nurse specialist told me I was fine to fly after 3 months when I rang up to enquire recently. Left a message with my consultant to double check, who ordered a CT scan, which has now happened (and is clear despite all my fears about cranial pressure) but no directive either way from on high. I’m going to ask my GP to chase this, as I often need to confirm even pre a job interview whether I’m fine to fly or not, and the issues I had/have waking up with cranial pressure made me doubt the advice of the clinical nurse specialist.
So hard getting a definitive answer or even making contact with anyone in the higher echelons of the NHS - and looking around and reading different people’s testimonies on this site, I have now realised that every single AVM is individual and unique to its owner, and there is no reason whatsoever why you should be able to help on this point, but the comfort and advice I’ve received here so far has been spot on and helped me SO much - I am still waking up with a feeling of slight pressure but I’m not worrying about it, and am consequently not so aware of it: huge step forward in my recovery.
So thanks again.
Hi. Its great to hear from you.
There is guidance on driving. The following is designed for use by doctors (not you & me) but indicates the considerations to be had:
What you can see is that it depends on whether you had a haemorrhage, whether your AVM is “supratentorial” (which I take to mean in one of the main lobes of the brain and distinct from infratentorial which I take to be the parts below those lobes, so the cerebellum or the more inner parts), whether a true AVM or a DAVF or a cavernous malformation, and in some cases the treatment you’ve had.
Find the bit you think fits and let’s talk about it.
The other consideration turns out to be whether that’s the only thing you’ve got going on. So dizziness is separately considered. If you’re reporting any dizziness, the considerations become “is it ‘debilitating’?” and “do you get any warning of onset?” So when I had my week of greater dizziness, I voluntarily stopped driving and talked to my GP. She reminded me of those questions and we decided it was not debilitating (worrying, yeah, but it hadn’t proved itself to disable me) and it did come on without much preamble, though I would have said walking or driving were occasions when I felt odd or dizzy. Since it was not debilitating, she said “you’re ok. Carry on.” So I did.
In my case, my licence was never actually revoked. I stopped driving voluntarily prior to my op and only when I had my op did the interventional radiologist say “must not drive and must tell DVLA” such that before DVLA actually got round to revoking, I was clear of my op and we were starting to re-apply.
My story here: My Update - Dural AVF Embolization
And then my worry week here: Third Stage - Degradation Post Embolisation?
Re flying, I’ve not seen written guidance but in general, seems to not be a limiting factor.
Hope this helps. Feel free to ask anything.
Just read your story and updates in detail - thanks for those links - blimey, what a journey, makes me feel very lucky as my journey was much more straightforward; hearing loss, pressure and pulsatile tinnitus in Feb 2018, dissatisfied with ear syringing NHS diagnosis so went to a private ENT person in March who ordered an MRI scan, back to GP for referral, NHS cerebral angiogram in June, diagnosis and neurological clinic appointment August, operation November 2018. And the initial symptoms only lasted about a month and then weirdly disappeared so all seemed fine from about April. And post op all I’m worrying about is pressure feeling when I wake up and the odd bit of tingling. Both of which have lessened significantly since finding reassurance from yourself and Merl.
I so connected with what you wrote about going for a job interview - I’ve just turned down a theatre job because I don’t feel recovered enough to be carless a long way away from home and “my” hospital! Other factors also contributed - following my gut instincts a lot more in relation to people now I’m a of certain age, but health worries definitely very much the a primary reason - but not one I dare talk about with people (other than really close friends) in my industry because of the general culture that “the show must go on”.
Thanks so much for sharing the assessing fitness to drive info. On 3 occasions I have asked face to face the direct question about how long my driving will be effected and NEVER got a straight answer from either my surgeon, one of his registrars and also my GP - it’s there in black and white: at least 6 months!! I shall be sharing that link with my GP when I see her on Monday…
Reading your story I should of course know not to be surprised by this, but I despair sometimes at the inability of the medical profession to walk in a patient’s shoes, the fear, the isolation, not to mention the debilitating symptoms which effect every aspect of our lives from waking to sleeping - but not getting answers - the fear of the unknown - is the worst.
We can also blame the NHS being stretched to breaking point for this - I do realise that, of course.
Just reading your story made my skull feel a bit tingly to be honest with you… so time to take your advice and put those thoughts behind me once again.
As you’ll see, my aim is to stop you going through my Nov 2017 to Nov 2018 unless absolutely necessary.
I’m a great believer and great supporter of the NHS. I’d just like it to be even greater; and why it needs to have such delays in it, I don’t know.
I’m glad my story helped.
Your story has definitely helped and thank you again.
I too am a hugely grateful and undying supporter of the NHS and would give them 11/10 to every single person who played a part in my care whilst I was in hospital.
Contributing as I do to medical student training - they are taught a completely patient centric approach - which then becomes impossible to apply (presumably because of funding, admin systems, and huge patient numbers) as soon as you leave the hospital.
So thank goodness for groups like this. Will shut up now,