Hi everybody! I just made my account this past week and feel stupid for not reaching out to my fellow AVM survivors! It’s been a little over a year since I had my brain bleed. I was in the neural ICU for 3 weeks and lost about 40 lbs while I was hospitalized. I came out of my hospitalization very determined and made big strides in my recovery, but now a year later I seem to have slowed down tremendously. Everything is almost back to normal and to the average eye I seem like a normal 22 year old. But there is still a big scar on the back of my head(which I’ve slowly started to take pride in, instead of trying to cover it up with long hair and a hat) and my speech is affected, which always makes me uncomfortable talking to strangers, and finally my hand writing has definitely been affected, I can still write but it isn’t neat and it is rather slow. I’m just very lost at the moment on what I want to do with the rest of my life and have slowly been burning myself out thinking that I can control the pace that my body heals at. I literally, as of late, have been losing sleep over the matter and have a hard time seeing the light at the end of the tunnel.
You are not alone in feeling like this.
I felt exactly like this at the beginning of this year. I was off work for the first 3 months of the year as I was feeling depressed and very low in mood. Then the pandemic took full effect which was not helpful.
I have really learnt to take a step back this year and really just reflect and look at how far I’ve come
You have been through a lot and sometimes it’s easy to just forget that and think that you should be ‘over’ this phase. Unfortunately this is not how life works. Just allow yourself to go through the emotions and allow yourself the time to heal. Living with an AVM is not exactly plain sailing. There will be good days and difficult days but you can get through them.
I’ve been through all the emotions this year but I have just learnt to embrace the change. I unfortunately had a seizure last Thursday (03/12/2020) on my way home from work. It happened at the train station when I was on the platform. I was shocked to have a seizure but I have accepted that it happened as this is the road to recovery. Fortunately someone was able to call for help and I was about a minute away from where I work at the hospital.
I have my MRI scan coming up so I’ll just take this in my stride.
Just give yourself time and remember you are strong.
All the best. X
Great to hear your recovery is going well! I had a bleed back in 2016, and ultimately had gamma knife 6 months after my hospital stay. I’m a believer that recovery from these injuries never stops, it just slows down. I’m fairly familiar with Buffalo, have been a few times, and gone to one hockey game there when I lived in London Ontario for a few years. Great City, always enjoyed it! Thanks for being here.
Chan, really sorry to hear about your seizure and good the MRI is coming. The road on our journeys doesn’t often seem to be straight, lots of twists, turns, hills and valleys!
Take Care, and the best to you,
Sorry to here about your seizure thank god you were in such a public place at the time! I’m slowly learning patience but it’s hard not to get frustrated. Thank you for your support Chan!
Hey John thank you! Definitely ups and downs! I hope my post doesn’t make me sound ungrateful, my situation could always be worse, but this journey has just been so humbling and overwhelming.
Doesn’t make you sound ungrateful at all. My whole experience changed my perspective on a lot of things quickly, humbling is a good way to put it for sure! John.
Sounds to me like you’re doing better than you make it seem to yourself
Like mentioned above - recovery from this, is life long
What I personally have learned from all of this(including this place) is nothing is guaranteed, not tomorrow - not how you recover - nothing, well - aside from bills & life never slowing down waiting for us to catch up
I just crawled out of ER again two days ago - now for a completely different issue(my gallbladder) < this thing felt like a brain bleed on the right side of my body under my rib cage - also, again - out of nowhere. Got up in the AM with pain so bad, I couldn’t walk or keep any food in for hours - wife dragged me to ER when I had a tad of clarity - they told me what & where & so on - My reply, it’s nothing like my brain surgery - hospital folk seem to like that attitude
Take easy(I know, way easier typed than actually done) - but, focus on what you can do & improve on what’s lacking a bit
GL to you & Us all
@JD12 Thanks for your message. I’ll just await the MRI scan and go from there.
Hey Mike sorry to hear about your gallbladder! You are tough as hell man!
You are completely right about the recovery being life long. I was so naïve to think that I was gonna be able to recover physically, spiritually, mentaly in such a short time. So crazy to hear peoples reactions when I tell them my story and from hearing the stories of other members I am blown away.
I am so humbled to be a part of this community! Everybody on this site is facing such a tough battle but has such a great perspective as a result!
GL right back at you! & to everyone who reads this!
Hi! It’s great you joined us and it’s good to see you’re getting some great support and community from the folk here. @Chan sorry to hear about your seizure but I LOVE your support to Jack. Guys, this is one of the nicest threads I’ve seen for a while. Great support
I’ve not been through a bleed, so these guys know what they’re talking about but the main thing I would say from reading stories on here for the last 4 years is that it is far better to be patient with yourself than to push too far. I think this experience teaches us a number of things:
- You get to know if your “friends” are true friends.
- You appreciate good health like never before.
- You learn patience like you never thought anyone needed to be that patient.
Keep carefully making progress. Don’t push yourself thinking that will get you further, faster because others here well tell you it doesn’t work that way. It sounds like you’ve made good progress, just keep going carefully. My own experience is that you will have setbacks but this can be just the normal non-linear recovery process.
Great to meet you!
Hey Richard thank you!
I’ve definitely been trying to change the ways that I look at my recovery and am slowly learning to be more patient, but it’s very hard not to stress myself out thinking about the time that I’m losing during this recovery.
Jack, 22 is very young! (I know it doesn’t seem like it at the time.) You’ve got lots of time left to do things. Hopefully, if you invest the time now, it will pay dividends later.
I definitely hear you on that! I definitely have been trying to figure out the best way for me to spend this time.
I feel for the young folk the most
This thing in my head was discovered when I was 14 - myself & my parents had no clue what the MD even said - since English is our 2nd language
But, I remembered as soon as I came to from my embolization procedure - Arteriovenous malformation < I heard the term before, so long ago - when I had my 1st CT scan, it was done due to a concussion
I feel so lucky to make it to a second away from 40 before this thing blew in my head
To all of “us” ALL - GL, and I really mean it
We’re still here for a reason
It sounds like we have a very similar story. I also had an AVM cerebral bleed (cvm) back in 2017. Also have a huge scar on the back of my head. Writing and speech were greatly affected. It also really threw off my balance which affected my walking, and since the bleed was near the optic nerves, it gave me double vision.
I’m 27 currently. I know it may seem hard seeing the light at the end of the tunnel, but the bleed happened. There’s no changing that. At this point, all you, or I, can do is try and improve. Be that physically, mentally, interpersonally, with writing, it doesn’t matter. Just focus on improvement rather than where you’re at. When you shift your mindset to one of small steps and improvements as opposed to big picture achievements or where you were pre injury, you’ll be much happier.
I suggest keeping a journal and writing down 5 things you’re greatful for every day. It can be a big event, or a really good cup of coffee. It’ll really help to increase overall gratitude and happiness. Kurzgesagt has a really good YouTube video on that topic called “An Antidote to Dissatisfaction”.
Jack - thank you for starting this thread.
for us younger AVM survivors it feels all too easy to get depressed and not acknowledge the incremental progress in the rehab journey.
After two bleeds before the age of 30, My doctors presented me with what felt like an obvious choice. Go for multiple embolization procedures or accept that I have an annually compounding 5% risk of hemorrhage. Of course I went for the embolization procedure and unfortunately suffered a complication with an Ischemic stroke that gave me paralysis of the left side.
I am now 11 months into my rehab journey and while I used to focus on measurable progress and how I could accelerate my rehab, I have learned that mindset can make you crazy as the brain is truly on its own timeline.
As many others have said here, every day outside the ICU is a privilege and we just need to put one foot in front of the other and remain upbeat.
Jack, Welcome to this group. As I have mentioned several times previously, I wish the internet and Ben’s Friends had existed when my AVM ruptured and I rehabbed from an urgent craniotomy. I felt so alone!
You ARE young. And, although I am no longer, I can remember distinctly how eager I was to recover and head back to my life. I pushed so hard and was so discouraged with my lack of perceived progress. I became so depressed. Looking back on it all, I can see how useless it was.
Our brains heal at their own pace. I would never discourage you from being forward-thinking. Yet, on the other hand, be kind to yourself. Let this be a time in which you explore your interests and, who knows, you may develop a love for something you never would have expected. (I know, I have!).
Give yourself credit for your accomplishments each day. They may seem small or inconsequential, but over time (a lot of time!), you will see how they will build into a more fulfilling life.
Wow, your story takes me back. I had my bleed at 16. A month in the hospital (maybe longer). Are you still in speech therapy? They can give you exercises to do at home. I wore a long wig for 2 or 3 years. People used to compliment my hair It took forever to be able to write again. More than a year. Here’s the thing and it works in your favor-the human brain is not fully developed until the age of 25. Anything you can do to recover more is great. Go to PT and OT and ask them to give you pointers for recovery. I think you should be very proud of your accomplishments in the past year. I had to drop out of school because I couldn’t write. I went to the mall and found a job I could do. You don’t have to plan out your entire life right now. Pat yourself on the back and make a plan. You can do it. Have Faith in yourself. Vicki
Wow Jack, you’re doing well! I had my bleed 7+ years ago. I couldn’t watch tv with the audio on for the first 2 years, noise was my enemy. I couldn’t type, i couldn’t do many of the things i used to do. Your post is written wonderfully! My speech was affected also, that became better as time went on. Do what i did: watch youtube videos with songs you know and sing along. That seemed to get my tongue moving. If the volume is loud enough, only you will know what word you messed up on. Cut yourself some slack young dude. Some people don’t make up their minds as to what work they wanna do until way, WAY older than you. Take time to fully recover, volunteer maybe? It’s not a race at this point. I was the healthiest 45yr old woman at the time of my bleed. Stuff happens and then you have to adjust. My walking, my hand/arm weakness, my speech, the way my brain understands and thinks all got better with time. You’re way ahead of the game as far as I’m concerned. I’m sad this happened to you at your age but no hurries. You’ll be in a better place next year, and so on! Young ill beats old ill anytime. I’m not saying I’m old but you get my drift. I’m rooting for you! Peace and love coming at you from south Texas…