Back to work?

Hi everyone!
My name is Sarah and I am new here. :slight_smile:
I was diagnosed with a grade 4 AVM on the right Occipital lobe 3 weeks ago.
Like many others on this platform, the diagnosis was very stressful and terrifying. I spent 2 days in A&E with very little information other than that they saw ´something´ on my CT scan and I had to have an emergency MRI.

I am now home and waiting for the radiotherapy department to come back to me with their opinion about Gamma knife surgery.
I feel very anxious about getting back to work as I experienced most migraine attacks and visual disturbances before my diagnosis at work and in other stressful environments. I feel like I need some time to gain confidence in my body again and to review the propranolol they put me on to manage the migraines.
I´m curious what others did after their diagnosis. Did you go back to work immediately?

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Hi Sarah, and welcome! My AVM was discovered due to a rupture, and I was off work for about 3 1/2 months. I had Gamma knife 2 1/2 months after bing back at work. I had gamma knife on a Thursday, Friday was a holiday and I was back at work on Monday. I had no warnings at all that I had an AVM, so it came out of nowhere for me. You have some factors o consider as you make your decision. The migraines and visual disturbances if triggered by work and/or stress certainly should weigh heavily in your decision. I think it would be perfectly normal to want to take some time, particularly if you are able to avoid triggers as you sort this out.

We are so individual in so many ways, and the right decision is sometimes hard to know. I like to refer to being at peace with a decision, as often the right or wrong is not known for sometimes. Take Care, John.

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Hey Sarah,
Welcome to Ben’s Friends. Lots of good people with a ‘lived’ experience around here.

I tried too, but the more I pushed myself, the more my body pushed back. I tried to convince myself that by pushing my limits I was building stamina to get myself back into it, but I pushed too hard, too soon, doing myself a greater injury, requiring further neurosurgery. Don’t be doing that.

There is no right or wrong answer here, we are all individual and we must assess it for ourselves. As I often say ‘Some people bounce back really well. For some there can be lingering issues and then for others there can be ongoing issues…’

I must agree with everything @JD12 has said

So, trying to gauge our management/recovery against another patient is near on impossible. What maybe an instant trigger for one patient, could be of minimal effect for another and for this reason your assessment needs to be personalised for self. Now, although I say this, I did exactly the same thing and tried to gauge my recovery in comparison to others. ie “They could recover OK. Why can’t I?..” and my frustration with self was/is HUGE. I wanted my old life back.

My advice: Take the time your body NEEDS and not just the time your mind (or the medicos) expect and listen to your own body. It will tell you when it has reached your limits, those signs maybe subtle, but if you ignore those signs, the consequences can be devastating. This is a time to be kind to yourself.

Merl from the Modsupport Team

I remember returning to work a day or so after finding out I had an AVM & when I explained it to my Manager at the time, he replied along the lines of “I don’t need to hear your life story, I just want to know if you can work or not!”

I was so stressed & shattered… what made this even worse was 4 weeks later I suffered a bleed after work & believe the stress contributed to my AVM rupturing!

Funny enough when my Manager found out, he wanted to visit me in hospital & I told my wife to tell them NO!

The trauma I suffered at this time, after all these years, still affects me to some degree… I moved on in life but only mentioned this to you so you can see there is always something much more worse happening out there to someone and confident others here have endured even much worse than this.

In short… live life & don’t be scared cause we are here only for 1 shot… speak to your employer & explain your situation but look after yourself… YOU ARE NUMBER 1 & without your health work means absolutely nothing… if you need more time off, then do it… you can find another job but you can’t get another life… I pray your employer is more compassionate than what mine was… God bless!

Thank you Merl and John,
I am sorry to hear how it was discovered by you John, I somehow do feel lucky that they found it before rupture so I can change my lifestyle as I wasn´t very good with stress management during my job in the hospital.
However, it is difficult to make these decisions about returning to work without fear and anxiety taking over.
When I saw my surgeon he was very blunt with the numbers and told me that I have 70% chance of rupture in my lifetime, but I am fine to go back to work and do everything.
I found it difficult to just go home and return to everything like before and I could not find anything online about other patients dealing with this.

That is why I am so grateful I found this place for support and advice.

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That sounds awful Adrian. I was doing bank shifts before, so my employer is not obligated to pay out any sick pay. That is probably why they aren´t bothering me at the moment…
Thank you for your advice!

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I know it’s difficult financially but life is too precious… try & ease back into work a few days/limited hours if possible so you can build up your confidence… God bless!

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Hi Sarah

I also found out that way, medics all gathering around mumbling to one other after my MRI in ED, and me asking what’s going on? Only to be told 12 months later by a neurovascular consultant after an cerebral angiogram. The consultant was amazing BTW and told me everything that they had seen and a few options based on what they knew at the time and pending an MDT discussion about my case. This is what I needed, clear precise information, all the ‘good’ and the ‘bad’ and most of all a plan. Much better bedside manner unlike the A&E docs. But I am not judging anyone.

Fast forward a few years, and after taking some time to ponder about life, under the consultants recommendations, I finally took plan A which was to have gamma knife surgery. My AVM is inoperable. What I will say is that once I was referred to neurovascular team they took over and really gave me their support. It helps knowing that somebody is an expert but you must also make your own decisions, like does life stop? What about your family, your job, your career, most of all lifestyle? All those things are tossed up in the air and it has taken a while for things to settle. Talking with people has really helped.

What I have learnt most of all is the right people will reach out and support you when you need it.

With regards to work I have applied for a flexible working request while I am waiting for the avm to resolve - reduction in working hours, time off for medical appointments to be reviewed every 12 months, as I have a few symptoms form the avm. It was not straight forward but as the diagnosis was more than 12 months ago I am using the equality act as a basis. I also spoke with an employment lawyer through a free 30 minutes consultation just to know my rights if work decided to let me go. You don’t have to go the whole hog but I just wanted solutions not more red tape.

Best wishes

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Hi @Sarah26

Welcome to AVM survivors, I’m glad you found us and I’m sure we can help you a little along the way.

I discovered my AVM because actually I could hear it. I don’t like going to the doctor (it’s a bunch of faff to get an appointment and sometimes inconclusive) so I was busily googling stuff about what I could hear until I found an article by the American Stroke Association about AVMs and DAVFs and stroke and something called “pulsatile tinnitus” (which was what I could hear) and then I went to the doctor!!

She referred me to ENT (I think she was thinking tinnitus rather than pulsatile tinnitus) and it was the ENT consultant who was able to diagnose mine simply by listening to it through a stethoscope: it was that near the surface and that loud!

In the same way as you, the bottom dropped out of my world. I’d self-diagnosed months earlier from that article I’d read but it was the formal confirmation that I had an AVM that knocked me for six. I resolved to tell my wife that my “hearing appointment” was rather more serious when I got home.

It was a Wednesday evening and I went back to work the following morning. I can’t tell you whether I was very effective at work over the subsequent days or weeks or even months but I went back to work.

Now, I wasn’t having migraines. All I had was a whooshing noise in my ears which got steadily louder over time. I did start to feel dizzy (I was getting turbulent blood flow past my ears, so maybe that’s why) and I got to the point of using the lift at work rather than the stairs. My boss wanted me to work from home rather than have me fall over in the office but I reasoned with her that actually I was safer being in the office with people around me than alone at home, unsupervised for 8-10 hours at a time. This was agreed and I stayed at work. I even argued that if it got to the stage that I couldn’t walk safely, I’d rather be with people and in a wheelchair than alone at home.

So that was me.

It shakes you. So be cognisant of that and recognise that it has put you off your stride considerably.

If your doc has encouraged you back to work, do it. I do think that spare time fills up with worry, so if you can do work it will reduce the time you’ve got to worry about it all. Like I say, I felt safer being at work than at home alone simply because if I became ill – with a stroke – it would mean that I might be looked after quicker and do better as a result. I also went on a bit of a campaign to tell people around me that if they found me having stroke-like symptoms to believe it could be stroke and to act accordingly. I got a medical bracelet made up with some info on, including my name, NHS number, my diagnosis and my wife’s mobile phone no, so that if I was found by a stranger anywhere they might dial 999 quicker than otherwise and hospital would know who I was.

The great news is that I got an embolisation about 7 months after that formal diagnosis and that was about 6½ years ago. I’m absolutely fine.

It’s great to have you on board. I’m sure we can talk you through any questions you’ve got.

Best wishes,

Richard

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We all have our histories, everyone is different, thankfully my boss told me I could only come back gradually, I went back 3 days a week 8 weeks after my AVM removal (craniotomy) and this was my 2nd surgery in 6 months, it’s amazing home much these things change you, I never noticed, but lots of things changed in me, not my ability to work but my attitude to things, and it’s amazing home much sleep makes a huge impact on how you feel, if you can take it easy for a while.

Martin.

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Welcome to our exclusive club Sarah.

I never stopped and went back to work the next day. Dealing with it head-on worked for me, but everyone has to develop their own plan and what works best for them. I figured there was nothing I could do about it and I was not going to allow it to control my life.

But I understand how the anxiety can get to you. This won’t be your last time. I personally had seizures and have always worried that I would do something to trigger the next one.

Best of luck to you.

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After my rupture in 2020, I’m still trying to figure out what to do.

My work is both physical & stressful. Something in between either or wound me up in ER again this summer with a bit of brain swelling.

Thankfully our finances are still solid - but, I’m still not quite sure how to pull back - yet, keep up with today’s insane inflation

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Hi Sarah! Sorry about your AVM diagnosis but you are in a right place. My AVM was diagnosed in April this year and I had craniotomy in July to clip it. I still have double vision, it was not fixed with the surgery and I think it will stay with me going forward. What I noticed is that I became more calm and try to avoid any stress. Because I realised that we live only one life and you should not spend your time focusing on the problems that are now seem so misarable. It took me a long to agree for surgery, but my neuro told me that my chance of bleeding is 40% in the next 4 years if not operated. I still have plans for this life and I want to live it as long as I am able to. Regarding going back to work, my boss allowed me to take some time off that I devoted to myself. I went shopping, beauty salon and just did what I liked to do. It helped me to overcome the post-diagnosis anxiety.
I wish you all the best and speed recovery!

Stay positive no matter what!
Best,
Jenny

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