The waiting is hideous!

On Monday I found out I had an AVM. I know nothing about the seriousness of it, not much about its location and nothing about its size. I feel like my case has been handled poorly. The consultant neurologist on Monday called it ‘cool’ and said I had nothing to worry about and that I’d hear in a few weeks about a further scan and someone would discuss possible options thereafter. After a phone call at 8:30 calling me in at 12:30 the same day I was somewhat relieved by all this as I thought I’d be getting news of a brain tumour or aneurysm or something immediately life threatening. Then I googled and realised an AVM was probably more serious than she’d made out…

Fast forward… Oh two days!!! Suddenly all has changed and I get two PHONE CALLS while I’m at work from the consultant who tells me 'things have become more complicated '. What the heck does that mean?! They had reviewed my case and someone higher up (I think, a neurosurgeon) walked into the meeting by mistake and he now wants my case (!!!). Suddenly on the phone, she is talking of radiation (gamma knife) but tells me no more than it would be treatment over a year, mentions a specialist hospital in Sheffield, tells me I can’t under any circumstances get pregnant (we were beginning to try for our second in a few months), I may have my driving license taken away and I must get in touch with the DVLA now, oh and to top it all off I urgently have to start treatment in the form of anti convulsion medication (which I’ve now started after having visited my GP to get the prescription) because I may have been having/I’m at risk of mini strokes and fits! All this on the phone - and she admitted she can’t explain it properly and that the neurosurgeon will explain it better!!

So last night I started the medication. And now I wait… I asked for a rough time scale and she said if hear within a couple of weeks. Snail mail ie the post takes forever and I’m expected to just go on as normal with very limited information. I can’t sleep, I can’t be bothered to eat, I’m worried I’m going to drop dead from a seizure at any time whilst looking after my 18moth old by myself. My husband is being amazing. We don’t have family close by so have told close friends in case we need emergency childcare. Family obviously know but are limited in what they can do as they’re all over the world. My mum has offered to come stay but we don’t have a conducive space for her to sleep… part of me wants life to go on as normal and the other part of me what’s to curl up and go to sleep till I at least know what the heck is happening to me!!!

Sorry for the long post! Helped to write it all down…

PS anyone hate the comment - ‘well you’ve probably had it all your life and nothing’s happened!’ My response wants to shout ‘yeah I’m bloody lucky but you try living with a ticking time bomb in your head you’ve just found out about’

I’m so scared!!!

Hi Sarah, I know exactly how you feel, My situation was that my AVM ruptured when I just got home from work, My wife found me lying on the floor of the bathroom where I had gone to vomit, I just remember going to the toilet and then waking in hospital after open brain surgery (But having no idea why I was waking in hospital). I then waited 7 months before my second craniotomy to remove the AVM and then a year for my follow up Angiogram to give me the all clear, This is just the way the NHS works, You will get great care and they will take care of you and your AVM but there re waiting times :frowning: , I was admitted for treatment and told I would be taken first thing in the morning for my removal surgery and when it cam to around 11:00 am I was wondering what was going on, Turns out my surgeon was called out and started life saving surgery on young girl at 05:30, I was eventually taken and he then worked on me till about 23:30 that evening, Now its the same surgeons that work in the private hospitals that work in the NHS ones, But you just don’t have to wait. This is the trouble with NHS and free health care. At the time of my health issues I had 3 young boys and a wife to care for as the only and primary worker in the house. So I had the same worries are you have, But came to an understanding or should I say an acceptance of whatever happens will happen. Needless to say everything went great and I have never looked back :slight_smile: , This will be the same for you, Everything will be fine and you will be OK, Stress and worry will only make things tougher for you. Take care

Martin.

Yes, yes, yes! Exactly where I am right now. They made it worse by shaking my head so bad I lost my stomach. Then told me of it by phone. Then told me to wait. I sit here feeling like a crossed eyed monkey waiting for it to burst. In which they told me if I had the worst headache of my life to get to the ER. Yeah Doc, that sure made me feel better. Not! This road isn’t easy and it is also lonely. Just know that I am with you in spirit. You are not walking alone. Love, {{{HUGS}}}, and blessings!

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There are ways to minimize the risk of rupture, try to keep stress levels down (blood pressure affects it) don’t take alcohol or Ibuprofen both act as blood thinners, try get sleep (I know this ones hard as your mind races at night when you lying in bed :frowning: ) . Do not lift anything heavy that will cause you to strain (weights etc) I would say avoid exercise that gets your heart racing for prolonged periods of time etc … this will help reduce the risks but most of all relax and don’t worry you both will be fine :slight_smile:

Thanks Martin

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Thank you Martin. I appreciate any words of encouragement. I always knew something wasn’t right. Just can’t believe they took this long to find it. The difference was, this time they used contrast with the MRI. I’ve had unexplained migraines since I was 5. I’ve had tons of MRI’s but they didn’t use contrast. I think I’m upset because they didn’t find it sooner and I have suffered so much from them. Nothing ever relieved them except for ice. I’d wrap my head with an ice filled towel. It helped.

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Sarah,

You’re right, the waiting is hideous but I have to say, it feels to me as though the more senior doctor “gets it” and you’re on the road to starting, which is great. Honestly. It took me 4 months to get to hospital, a month to get an MRI, another month to get the MRI reported back to the consultant, then another month to get to (in my case) Nottingham neurosurgery. See here. After seeing the neuroradiology specialist, it took a further 5 months to get to first treatment.

Gamma knife is pretty uninvasive and suitable (so far as I know) for smaller, finer vessels, but it takes year(s) to be effective. There are other treatments but may not be suitable / possible for your AVM and some are more invasive, dangerous.

Welcome to the club! There are many of us who’ve been through the same OMG moments with the same worries. See my story link above.

We are here to support you, however we can. However, you have almost certainly had the AVM for a long time, if not forever, so the likelihood is not that it will do any damage immediately. Honest. If you get anything significant, sudden, go to A&E. Otherwise, dont worry about it. Its been there a long time.

Really hope this helps. Very best wishes,

Richard

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Your not alone, we are all here for you and understand what your dealing with,. Your story is not uncommon, I’m very similar situation, you should be very grateful that doc walked in and cared enough to take control, stay positive and be strong, god bless

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Thank you for your replies. I have read stories on here of much longer waits so I’m humbled that someone is going something quickly to minimise my risk of stroke or seizure (ie putting me on medication two days after diagnosis).

It is lonely. People say ‘just take one day at a time’ or ‘you’ve lived with this all your life, you’ll be fine’… They don’t understand that there are good days and bad days and that sometimes (without wanting it to be!) the thoughts of what is happening/could happen are all consuming!

Good to know about ibruprofen - I specifically asked my GP about this and paracetamol as painkillers for my headaches and he said they were find to take. I did question it in myself so haven’t taken it… And now I won’t. Thanks

Thank you to everyone who replied x

Sarah,

Youre absolutely right, it can consume us. My strategy was to start a new hobby, to busy my mind with other things. Otherwise, it is too easy to go into this 100% and be glum all the time. Staying on here too much isn’t good for us, either. Life still goes on.

Look after yourself!

Richard

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Hi Sarah,
I understand how you feel too, what medication are you on now? How did you find out you had an AVM? I looked on your profile and I couldn’t see how it came about that you found out. The NHS is really frustrating to deal with, I felt my case was badly handled and I did take the initial treating hospital to the Ombudsman. If you feel strongly your case has been mishandled this is what PALS is for. I have very much learnt that treatment is very much a two way street. I really pushed for the right care, but ultimately I think I achieved a state of confidence in the Consultant Neurosurgeon that treated me. I have recommended this book a few times now but Saturday by Ian McEwan is a great book for helping to understand the curious creature that neurosurgeons can be. The sense of time that they have- this has been my experience with Consultants in general is very different to patient time. The whole infrastructure that supports them is pretty inefficient and pretty convoluted. However, there is good and excellent care available but you have to research, go with your gut and get second opinions and really think about what you want and where you want to be- this is how I managed myself managing my care.

This is purely personal experience, but I really interrogated my initial consultants choices- I have built up quite a lot of experience from dealing with another Gynaecology condition and have really come to spot the good ones. Neurosurgery and Cardiology are held in exceptionally high esteem within hospital environments and the degree of education that consultants have doesn’t often face challenge from colleagues or from patients- usually patients are scared and colleagues are awed. You/ I as a patient have to put yourself in the best place to maximise the time that you spend in the appointment- on average 15-20 minutes depending on the clinic type. I guess the advice boils down to be pushy, get names of Consultants secretaries, insist in clinic that you see the treating consultant especially in your initial appointments, NOT the registrar. Insist that they tell you the dates of the MDT where they will discuss your case- Multi Disciplinary Meeting and give you the follow up report of their recommendations as soon as possible. I really took that attitude that I was making my business their business. It’s not about being aggressive, it’s about being calm and informed and helping you to help yourself.

Hi Sarah,
I have found your post on how you were diagnosed, it sounds like you actually have a pretty reasonable GP, they took you seriously enough to send you for an MRI. Between May and December 2014 I visited my GP 8 times with symptoms that they dismissed as related to endometriosis, stress or depression- I was light sensitive, nauseous and having constant headaches and migraine with aura- my partner called the GP on one occasion because he was really concerned but the GP didn’t want to come, because it was “just a migraine”, I think of all of these instances now as lucky escapes. I remember stating to the GP that if I was experiencing aspects of depression then it was related to living with erratic illness with real life inhibiting symptoms with according to them no discernible cause and no offer of hope assisting in finding out and treating. I finally had seizures in December 2014. I was made to feel like a frequent flier until I hit crisis.

Also, in neurology appointments, this again is personal experience I have come to realise that when you have no immediately discernible visible condition you are not considered comparatively ill or unwell and it’s hard for people around you- family/friends to fully understand, but this is the hardest and most isolating thing about this condition is in some people its non visible nature. Especially if you’re lucky enough to have it discovered before you experience any life inhibiting symptoms. I remember distinctly feeling like I had passed through a semi permeable membrane, but then I considered it’s a pretty slender membrane for everyone anyway between ill and well.

The other important thing to consider is that as much as you might not like to hear it the fact of having your AVM is not news to your body, it’s been accommodating it these 30 years. My brother said this to me about my AVM, his boss had a brain tumour, his body could not accommodate its constantly changing nature it was struggling. The different with AVMs is that generally speaking they do not grow in unpredictable ways as is the case with brain tumours. In the triage of the world of neurosurgery I came to understand that although they are serious, tumours, strokes, aneurysm will always be managed first. On my first scheduled date for surgery the date was pushed by a week because the surgeon I was seeing had to operate on two tumour patients and a stoke patient. There were only three available places that day.
The neurologist that first saw me said I had to calm right down as the flight or fright state I was in was not assisting my body- ie. stress hormones I was producing. I thought this was an interesting perspective. When I look back, I experienced most what I understand now as AVM related activity when I was having massive hormone fluctuations.
Ultimately though, I was treated within one year, I am approaching the second anniversary of surgery and am back at work, I still go for outpatient appointments and know this will be the case for the next 5 years or so. I take each day as it comes, things happen last life is different but I have come through this in a way that is understood as successful, I can’t say it hasn’t been hard but thanks to another NHS hospital I had excellent pre and post surgery care, I wouldn’t be here without them.

Hi Sarah, Totally understood also on the finding it !, I had a seizure out of the blue in 1997 and then again 2007 had MRI’s and ECG’s etc test mainly for Epilepsy and I asked also why didn’t it show up on these previous scans and they said the only way this type of AVM would have been found is via an Angio or contrast MRI, So The whole why was it not found earlier when there were symptoms !, I totally get :slight_smile: . Take care

Martin

Hey,

I had my AVM bust in November 2014. I wish I would’ve known sooner because it would’ve been much easier to have it removed and not have it aneurysm. I had to go into emergency surgery where a neurosurgeon removed the AVM and get the blood out of my head. All I can say is keep moving forward. I think you are in good hands. Life will be hard, but it will get better. I will pray for you.

God is good all the time

Zac Steinfeldt

Hi:

Your AVM journey is just beginning. It is a long and arduous trip! Your doctor seems to lack a certain bed-side manner by giving you so much information over the telephone before you could fully understand what an AVM is. I would guess that most of us hadn’t ever heard of an AVM until it turned our lives upside-down. Hopefully you will find doctors who can and will walk you through all the steps and procedures that are yet to come. We are here to support and encourage you. Right now, you need to BREATH … Isn’t that’s better? Now, pray and be patient. You’re one of us now, and we do care. Wishing you all the best.

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