Hi all, i’m new to this community but it seems like exactly what I’ve been needing
A bit of background - my AVM bled a few weeks ago (severe headaches, vomiting, vertigo and memory loss but thankfully no other neurological deficits) and I was discharged from hospital at the end of March. I’ve been trying to adjust to life outside the hospital again but i’m struggling with the fact that I’m waking up every morning with headaches still. Pain meds do help but I want to get to the point where I don’t need to take them as regularly anymore! I’m also feeling some psychological effects - I used to be a very sporty, active, medical student before my AVM bled and even though I know eventually I’ll be able to go back to everything, right now I just feel so frustrated and trapped. It feels like things have been ripped away from me. Did anybody else go through these thought processes, and how did you deal with the first few weeks of recovery? Any advice or kind words would be really appreciated
I was discharged from the hospital in October, 2012. Before I was discharged, I asked my neurosurgeon how long it would take before I felt normal again. He told me about 6 months. The first couple of months were the hardest for me, but with each passing day, I would feel a little bit better. I too had a bleed, but it occurred after my 2nd embolization prior to my craniotomy. When I was discharged, I was happy to be alive and thrilled knowing I would be eventually going back to doing things I enjoyed. It is a long journey to get life back on track, and it first, it seemed as though life was passing me by, but as I started to feel better, I was able to start doing things which in turn gave me motivation to want to do other things.
Hi Gwen, Im very much relating to your frustrations and come here looking for encouragement too. Did you have surgeries or anything? AVM treatment for me was amazingly successful. Unfortunately, I also have a “small aneurysm” that is being monitored. It keeps me in a scared state that I wouldn’t have otherwise been in. I hope it comforts you to know that AVM treatment is often remarkably effective and hardly any pain involved for me___ and I was pregnant at the time. My discouragement comes from this dang aneurysm. If its not being treated after a bleed, you can always get another opinion. <3
Hi all, thanks for your kind words
HappyToBeMe - it’s really encouraging for me to hear that things do get easier after the first month! Right now it all seems so far away
Dee - no, I was just carefully observed and given a lot of pain meds as my bleed appeared to be clearing up by itself. I have a follow up scan in 6 weeks after which they’ll decide if I will have gamma knife or not. I’m amazed to hear you went through all of this whilst pregnant! You must be so strong, it’s amazing to hear of stories like this
Hi Gwen, Please be patient with yourself as you recover. My bleed and subsequent stroke and brain aneurysm happened on 5/14/11 and my recovery continues albeit at a much slower pace than the first year. Now I am grateful to God that I never had to take any prescriptions so I've no recollection of the pain you experience. Gwen, I was hospitalized for 9 weeks (5 weeks in one hospital's ICU and 4 weeks in Rehab) and I have no memory of the first 5 weeks and only remember Rehab as if I was a visitor. The human brain is amazing and I was gratified to learn that my husband came every day morning through night and my children visited a lot too. Of course, I wish I had never experienced my AVMs (my 2nd one was obliterated by radiation last July) but I am trying to make lemonade out of these life lemons I've been given. Gwen, next month I will celebrate my 3 year anniversary of my bleed and I love the passage of time now! I will keep you in my prayers for I know that you are strong and you will be an asset to the medical community after your experience.
Hi Gwen, It is natural to feel like that & only us can come out of it. I dont have headaches but have all these funny feelings on my body some times. When I came from the hospital I felt in secured most of the time feeling that it will happen again. It takes time to get the confidence back, but try to get involved in some of things you did. I was lucky to go back to work with very understanding people. The biggest thing is accepting what has happened. Dont think why me & what I cant do now. Its hard said & done.But eventually you will. Religion helped me a lot, if you can try some meditation. I will keep all of you in my prayers. Not that I dont feel all confident about myself but these are the things I do. Hope it helps.
I am about 5 weeks post surgery for my AVM. It is normal for you to go through these thought processes. I know trying to focus my thoughts on the positives everyday was really what I needed to do. I am not saying it doesn't get frustrating sometimes (I have gained over 10 lbs!!) not to be able to get out and do what you are used to doing, but you will be able to soon. I haven't had major headaches since the surgery so I hope those are getting better for you shortly.
Keep your thoughts positive and remember, there are many that are not as lucky as we are after an AVM or any sort of brain event. We are the lucky ones here being able to continue!
Hi, Gwen - it's only been a few weeks for you - give yourself permission to rest and let your brain heal! I know it's super frustrating precisely bc you were so active and now everything's different. But it's great to hear you say that you know you'll eventually get back to it. It took me a couple of years to get back online - no joke - so you're ahead of the game in my book! This will likely mess with your education's schedule - e.g. you'll graduate later than planned. But now the priority should be rest and recuperation as you re-adjust to not living in the hospital. One suggestion is to make a re-entry plan for returning to school. I'm sure they have resources for "accommodations" for students with health issues. Leverage these for all they're worth, but be generous on your timeline. Better to take more time and come back super strong rather than to go back prematurely and feel awful. Take care :)atnt
It's been exactly one month and two days since my bleed and - you were all right! It does get easier :) I've had a few bad days and a few good days, but the bad days are getting fewer and with bigger gaps between. I'm so lucky to have the support of my family and boyfriend, God and of course everybody on here. I'm so thankful that I haven't had any lasting effects of the bleeds, apart from the headaches, but they're getting better too. My university exams and dissertation deadline have postponed until August and I'm slowly starting to get back into uni work - very very slowly though! Finally have an appointment to see my neurosurgeon on the 1st of July to discuss gamma knife, and I think I'm going to have an MRI before then to see how my brain is doing. Once again, thank you all for your support :) <3