Hi everyone, it’s been a while since my last post/comment. I could have posted my thoughts much sooner but… despite this place making me feel seen and not alone, it also stands as a reminder that I’m living this. It makes me feel frustrated and sad. I’ll try my best to not think like this for the future. Anyway, my angiogram revealed a grade 3 AVM. Treatment options (the risks specifically) were depressing for the most part. However, I plan to seek a second opinion. I’m now set for a focal MRI. I’m simplifying it but if I’m more right brained, they can resect it. Which is what I’m hoping for… Now as for where the advice part comes in… I voluntarily left my job on amicable terms due to the AVM. Long story short, I wanted to focus on my health. Apart from my AVM, I have been focusing on my right shoulder as well. Pain radiates to the arm, neck and hand. I suffered the injury last year and there hasn’t been significant progress. 
I wish I could dedicate my time to this 100% but I’ve got bills to pay and savings last only so long. I’m planning to search for a job after I get the second opinion from Barrows. At the moment, I don’t have the funds for more opinions. It’s meant for other needs I can’t afford to ignore. And when I have my treatment options really established, I don’t believe I’ll start right away because by the time that happens, I’ll have no savings left. How can I go through it with this worry in the way? And there’s the emotions too. It’s scary to go through it (whatever it may be). I doubt I’ll decide what I want to be done to me in one night. The plan is to not give the people looking for hires a reason to not hire me by mentioning my AVM. And discuss accommodations after I get the job. What do you think about my plan to start job searching and work before treatment? Thank you for reading this.
Hi Luca and I’m terribly sorry the news. As a survivor of 4 bleeds, I can tell you, no one knows what you’re going through exactly other than you. What I can tell you, as an AVM survivor who has survived 4 bleeds, I strongly suggest getting it treated in whatever way you see fit. I wrote and published a book “Malformation: when bad things happen to the right kind of people” but in short I’ll just level with you, you did the right thing coming here! I’ll leave you in the capable hands of other Drs. and survivors but again, I’m glad you’re here!
I admire the fact you have given up so much to put you and your health as a priority… you need to do what you feel is right and makes you comfortable… I don’t think there is any right or wrong answer here cause ultimately you make your own choices in life.
I hope you find the best way for you moving forward and just know that the journey may feel long but you’ll be just fine… God bless!
I totally understand your despair and anxiety. I was in this position as well regarding work. I appreciate that the bills pile up and the world can’t stop as you wander the path of treatment but, based only on my experience, I would encourage you only to seek work if you feel capable in yourself to do it. If you feel like you are not up to it but push anyway I think it will put greater stressors on your mental health. In my case, I prioritised treatment over anything else because without a way forward with my health I had no way to progress the other things in my life.
Matt - avm left parietal lobe, craniotomy 6 June 2025
I got my focal MRI results today and I’m more of a lefty. I won’t be able to see my neuro until Sept to talk about it due to his busy schedule. I decided to just send all the accumulated data over to Barrows at this point in time. My neuro will likely tell me gamma knife anyway, and I don’t want to wait until then to send my data over. I’ll likely have to do GK. I like that it’s invasive. It’s the side effects that scare me really.
Hi Luca,
I hear you! I sometimes “joke” but perhaps it’s more my being facetious on purpose with those around me who don’t understand and think I’m exaggerating about the pain, etc., by saying I’m very lucky to have such a rare problem, it seems like I’m special, but forget special, I have the most expensive rare problem! It’s usually met with looks I don’t care to understand, and had decided no one has the right to speak of my AVM, or expect any information. It’s working for me because I couldn’t take the selfishness anymore, and I rather reserve my energy for my kids.
I’ve had a rupture in 2013 and been very fortunate to have been able to have my 2 daughters, and subsequently, I’ve developed micro bleeds. I know how hard it is with work and taking time off and I believe there’s no employer out there who’s understanding (it sounds cynical, but I’m speaking from my experience), yet it makes sense to be able to dedicate your time fully to get yourself to where you want to be health wise, but also difficult to do so without working because of the cost of consultations, treatments, etc.
What I did when I retuned to work full time after both my kids were born and I was ready, I didn’t disclose that I have an AVM, but had said upfront I require a hybrid working environment (this was pre - Covid) and I was fortunate to get that. Unfortunately it seemed to irk coworkers who also had their arrangements, and my superior at the time didn’t have the backbone to stand by his word. The micro bleeds got worse, I then explained to them that I have this condition. My Neuro also motivated for me to work half from home and half at the office, but they refused to accept it so anytime I wasn’t at the office, even if I worked from home, I had to put it in as leave. My leave, sick leave, etc. was used up within a couple months and then it was unpaid leave.
It’s a tough situation to be in, and I’m still fortunate that although I’m not working, my husband does pay for medical aid but it doesn’t cover everything I need.
Perhaps you can have the same set up of a hybrid working situation? Or apply for jobs that allow you to work remotely? That’s become quite common after Covid.
I hope you can work something out and I’m sure you will. Employers will understand if one has migraines before they understand AVMs (people only understand what they know). But I sincerely hope you apply for jobs and when you know you’re shortlisted, request upfront for a hybrid environment. Also, LinkedIn is a great place to build your professional profile as well as search for hybrid or remote jobs (you probably may already be on LinkedIn).
If you’d like to chat further, send me a PM/email as I’ve been through this with a few employers.
Wishing you the best and keep me in the loop.
Best wishes,
Suraya
Hi there!
I’m sorry to hear about your multiple bleeds but glad to hear you’re ok. I’ve had one bleed, but get micro bleeds a couple times a year.
You mentioned a book you’ve written. Do you know if it’s available in South Africa? I would like to give it a read.
Warm wishes,
Suraya
Hi. If Amazon is available, in your country, it should be? Also if you visit Malformation: When Bad Things Happen to the Right Kind of People - Kindle edition by McMonagle, Paul. Religion & Spirituality Kindle eBooks @ Amazon.com. that should take you to the e-version which is available anywhere there is Internet to download it. I hope it finds you well. Grace & peace as you continue!
Thank you so much! I will definitely check on Amazon.
Much appreciated.
Suraya