18 yr old daughter diaganosed last week avm on sca

Hello, My daughter is an emt. She was having headaches and tingling in her hands. started dropping things. I am so proud of her, she was one of the youngest to complete her emt training and managed to get hired when many young ones dont because of insurance concerns (driving ambulance, moving patients etc) now we do not know what to expect. From all (what little we could find) we hope? the surgeon will just remove it. but how long can she expect to be off work, will she need help with “necessities of daily life”? H


Hi Cindy, Good questions to ask your daughters neurologist, In my experience the recovery is different dependant on where the AVM is located and how big it is and then how it is treated if it can be treated, There are loads of variables, But to give you a nice and good reply first post I will say this I had my AVM removed via surgery (Craniotomy and mine was in my right temporal lobe and was about 3 cm and near the surface) I was in hospital for 1 week from start to finish, I was perfectly fine but a little weak walking even the day after, I was back at work 8 weeks later and have never looked back, Now I can exercise with weights and do activities with my kids like Karate etc , all with no problems, Going back to work after 8 weeks was a little early but I am an IT Specialist and work on a desk, I do have headaches but these headaches are a result of my brain haemorrhage not the surgeries. Surgery lasted 10 hours in total but it was easy for me I went to sleep and then woke afterwards and was able to remember everything and had full motor functions so I was good to go :slight_smile: . Your daughter could have a similar journey or not all dependant on the things I outlined before, Take care and remember that here we are all survivors and there are so many of us, She will be just fine :slight_smile: , Take care



I don’t understand why you didn’t ask the doctor this, or your daughter considering she has a better understanding of the medical field than most people (and even that isn’t necessary to ask doctors these questions -these are perfectly normal to ask ANY surgeon about ANY surgery). Anyway, from my experience I stayed in the hospital for three days (but I was intubated for one so it feels like two for me). Had a crani that took 12 hours. The next 2.5 weeks I had headaches comparable to thr chronic pain I had leading up to the surgery for months, but it was healing pin and went away soon after that. I’m back to classes now, everything is basically back to normal :slight_smile:

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magnolia, trust me I will be asking the doctor but our appointment is not until NEXT Thursday, which in my mind is 40million questions away!
thanks for the responses

you mean when this got diagnosed and told you would need you never asked
this question? That I absolutely don’t understand. Either way if you were
really desperate you could call the office and ask. Like Richard said it
really depends, and it takes a certain kind of person to come online and
talk about this, so you’ll get a skewed idea from asking people who took to
the internet compared to a doctor who’s seen more.

HI there…I am overwhelmed as well as my 16 year old son got diagnosed last week with an AVM. HIs is in the Supplementary motor area. We are weighing in on surgery or gamma knife. I have asked a Illion questions already, so ask me anything. Hugs

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Cindyflo - I am in a similar situation as you. Praying for us both. Thank you for sharing your story, Martin. I’m new here, because my wife was just diagnosed. We have our first appointment on Monday with the neurosurgeon to go over everything. Like a lot of folks on here, I’m very scared - but it was very comforting to read your story.

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Cindy, It is totally understandable that you did not take everything in when told about the diagnosis, I know this first hand myself, It took time and research before I was able to build a sensible list of questions with the help of this site.

Magnolia, Cindy is looking for help, Perhaps suggestions on what to ask now would help more ?.

Thanks in advance.


Hi Familyman, On my second surgery which was the one that I was scared from the first I didn’t know had happened, I was fine for the whole time leading up to the surgery till they were wheeling me down to the surgery prep room and I thought for like 5 seconds maybe I wouldn’t see my sons again, Brought tears to my eyes and then I shook it away and started singing in my head Bob Marley 3 little birds (Don’t worry about a thing, Cause every little thing’s gonna be alright !) and it was :slight_smile: . Trust in your wifes surgeons as they do these surgeries every day this is routine to them and they will take good care of her :slight_smile: .

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ok i guess i wasnt clear. our pediatrician sent Olivia for test for what was thought to be a persistant sinus infection. Mri led to mra we have not been into the doctors office (pediatrician or neurosurgeon) since the diagnosis. Have learned where the avm is from reading the radiologist reports. Our pediatrician (who is fantastic and we love her) told me we could call her office but she is not the specialist and does not want to speculate on what he will say. was just looking for some advice as to 1) shall I plan on taking a leave from work or she can be left alone after surgery (i work a mile from home) 2) will she need help navigating to bathroom, eating etc 3) does this mean she wont be able to be an emt in the future you know all the stuff a mom thinks about when your child is involved and you cant sleep!
thanks to all who share

Just to give you a little bit of relief on how things go after surgery. I had 2 nurses with me 24 hours a day till I was out of the hospital even when I had family there so some one will always be watching over Olivia. Its good that you live close to where you daughter goes to hospital. The hospital I went to was a 4 hour drive away so it was a travel for my family to stop by.

She’ll probably need a little help for the first couple weeks. I did. Definitely after surgery the first few days I needed help showering and going down/up the stairs. In fact when I was in the hospital a social worker came by to make sure I would have assistance at home for a while.

She already has covered the bases really…I have no ideas on questions at this time. Still it is better to ask the doctor than a forum, which is why I said what I did. I’m already giving her my perspective on how my surgery turned out.

Thanks magnolia and I agree 100% here we always ask members to consult with the doctors and that we can only share or own experiences:-) , thanks again