My diagnosis for my AVM was in 2012. I had an angiogram this week. It still has small feeders going to it. I have the option of embolization again ( I have already had 3 ) or surgery. I have already had 3 radiation treatments. That is not an option this time because of further brain damage. I just want it out. I’d rather do it now vs later. I am 50 yrs old. I have not had a rupture. It is close to the motor strip and language centers. I just don’t know if i would have any issues after the surgery. I literally am tired knowing that it is there. Most of the stories that i have seen on this forum have been positive. Getting back to work after 3 months or so. Has anyone experienced longer recovery times. I know it is different for everyone and depends on where the AVM is located. Mine is in the left fontal.
My initial bleed was in 2000. To spare the full write up, I literally wrote and published a book “Malformation: when bad things happen to the right kind of people” that is my story. I encourage the read if you like but it is not medical advice. I hope you can receive the treatment you need. Blessings as you continue, grace & peace as you go!
Hey Melissa,
And in all honest, nobody really does, not even the medicos. They can give you percentages and predictions of outcome, but they can’t give guarantees. 1mm to the left 1mm to the right can make the world of difference and because we’re all ‘wired’ differently, the outcome can be very individual.
I’ve had a few neurosurgeries and each one has had it’s own impact. My initial surgery was back in '96x2 then again in '97. Initially, I was on a bit of a seesaw of symptoms. I had a few years of slight symptoms/after effects. I learnt how best to manage around me. I managed fairly well for a few years.
Then in 2013 I ended up needing 3 more brain surgeries. And the outcomes were less than desirable. Although I have attempted many times, I haven’t been able to return to my former profession since. I’ve had to learn to accept that, which was a very bitter pill to swallow. I couldn’t say which surgery was worse, for me, each had a compounding effect. The recoveries, each took longer and longer and I’m still symptomatic today. I’ve recently had a neuro appointment where I was advised further surgery maybe needed and I don’t want it, not again.
And for some this can be the result. Back in the mid 90’s I was a bit younger, my recovery was easier and I bounced back OK. Around the 3 month mark I could function ‘normal’. Don’t get me wrong here, I wasn’t running marathons, but I did get my life back. I thought I’d do the same things I did previously in '13, only it was totally different and the more I pushed to recovered, pushed to get back to ‘normal’, the more my body pushed back… …until…
…something went 'POP" and I ended up back on the neurosurgeon’s table.
Some people can recover almost unaffected, for others there can be lingering effects. But then for some there can be lifelong impacts. I think your plan of 3 months or so is a good place to start and then re-assess from there. I say this because I set myself a hard deadline after my 2nd surgery, but that specific surgery was the midline craniotomy and my recovery was AWFUL BAD. When that 9weeks (Medical advice & My timeline) came and passed, I was nowhere near recovered and I feel into a pit of depression for not meeting my own goal. So, ‘try’ and give yourself some flexibility with time. we don’t all recover to a set timeline.
Look, you might bounce back as if nothing even happened, some people do. But if you’re semi-prepared for a few bumps in the road, you won’t be too shocked if/when they occur.
Merl from the Modsupport Team
Hello Melissa,
I am very sorry to hear about your AVM.
As for me after a very big headache in 2016 I was diagnosed with a Dural AVM on the left side.
My doctor decided it was small and I was monitored for 6 months as it appeared to stabilise itself.
Although not cured the risk of do nothing was better than having gamma or surgery.
I have to live with this every day although I have learned to work around it for want of a better word.
This means that I don’t lift heavy weights or twitch or sprint exercise movement. So this means fast running gym weights unless light are off the menu. I am a bit clumsy and my head is sensitive so I tend to where a hut most of the time. Although probably minimal protection if I knock my head it had lessened the impact when I have hit my head. I do suffer headaches occasionally and have only been back to the hospital once for emergency checks. My advice is I will know when to call emergency. By this it would have to be a headache as bad as the original. The bottom line is that I have a permanent blood clot in the AVM which stopped it from bleeding.
Your doctors advice is the most important but I can only share my experience of living with this.
Hope this helps.
I was diagnosed Dec 2010, suffered a bleed Jan 2011 & had craniotomy Feb 2011.
Returned to work slowly on light duties around 8 weeks after surgery & then full time in Sep 2011 when I was also allowed to drive again… I felt like this took a while but it took longer to mentally be fit again & I have never been the same post bleed but have adjusted my life accordingly.
I honestly live with the trauma on a daily basis but I do think about how different my life could of been if I didn’t act as fast as I did when I had my bleed, as I was home alone, which was scary… I could of also not been here to tell my story.
The diagnosis, the bleed, surgery, recovery & potential reoccurrence a few years ago all feel like a movie… but I am here today to share my story… just try & be positive & strong is all the advice I can give… God bless!
Thank you for the replies. Our HR manager said that she had an employee come back to work after 3 weeks. He had a tumor removed. I was like you gotta be kinding me. I seriously doubt mine will be like that, but I can always wish…
Hey Melissa,
and that’s exactly why I say:
We all hope, wish, beg and pray that everything post op is smooth sailing, but whatever the outcome you need to look after you. If you need rest, you take it. If you need medication, you take it. You are the one living it. Other’s may have opinions, they don’t count. You manage the best way you can, for yourself.
Merl from the Modsupport Team
I have problem with being able to come back to work " slowly " . I have to be 100% before i can return to work because of the nature of my job. I want this " thing " out of my head, but i worry ao much that I might loose my job if i can’t come back within my FMLA of 12 weeks. HR told me that there would be some wiggle room if you will, that could be used. But if it goes past that, I really don’t know what else i could do.
I just want to add my voice to the “I hope it goes as well as it can possibly go” line, Melissa. I do think you guys in the US have some very ungenerous situations with things like FMLA. So lots of luck from me!
Very best wishes,
Richard