Hello all. Myself, its been a bit weird - its almost 20 years now, since my major bleed. Ive had 3 bleeds. im now 37, i will be 38 next month.
My first bleed was when i was 17; 18 and 24 years old. The worst was the second, when i was 18. I lost the power of speech, it took me many years recovery. It was bloody horrible! Thats for sure.
i couldnt continue my apprentiship, i was going to be an electrical. Eventually i went to college, computers. I ended up doing graphic and web design, which i enjoy. Ive had around 12 yeasr expreince. It can be still very hard - being on the phone, i still miss words, or numbers. I guess thats something i will never be able to bring back; but i keep on soldeiring on! Im lucky enough to be able to go to the gym, and play a lot of tennis. My right side is still a lot weaker, but i have full movement.
I got married, have ahouse and continue to work.
I guess im lucky really; although the aphasia is still very hard sometimes. Sometimes my speech is ok; sometimes not. Its been 20 years though, and sometimes i just miss basic numbers and letters/words.
i can hardly believe its been almost 20 years, but time flys? Can anyone else post how they have faired when the years have gone pass?
Hello, Hello, Rich...It's been a while but glad to see you back on the site. It's been 8 years since my bleed...8 years of aphasia. Like you, I have good hours of the day and then it seems when I get tired, my aphasia kicks in more.
Yes, I do get frustrated. Knowing that I have friends like you who understands makes me feel less alone.
Its only been 2 years in March (Maybe that's why I still get pissed hey) I too have good days but realistically I want it to go away and the "old" me comes back.
You are great and I admire your out look. One day I will have a similar out look lol.
I don't suffer from Aphasia but I struggle to walk etc but I do what I can & 1 day.... you never
know.
You sound happy & I hope both of us continue to improve xx
I take off my hat to you Rich...20 yrs is a great achievement and to hear you still be quite positive about it is phenomenal...stay strong brother...God bless!
Dont be suprised if not too many long term replies cause many would of moved on from there experience and have no reason to still be on here or even go on here.
Wow 20 years! Rich, you are amazing! I'm just a little over 7 years, I have a pretty good life. Great husband, 2 wonderful daughters and my dog. I miss being able to work and being able to drive. I don't have aphasia but I have trouble with numbers, like you. My remaining deficits will remain, I suppose but life is good.
My AVM was back in 1992. I still struggle with deficits, like finding certain words that I blank on. Overall though, life has been good. The DRs saved my life: I came very close to biting the big one! I have been given 30 plus years that I wouldn’t have had. Thank God for medical advances.
Keep up the positive outlook. That is most of the battle to be won. Please let me know how you are doing from time to time.
I have been off of the site due to some challenges, and really have missed all of the support and sharing to be had.
My avm bled before I was born. I am now 31. I am not able to drive due to my vision and coordination issues. I have some cognitive issues, I have some left sided weakness.
It's been almost 5 years since my rupture. I still have double vision. Doctors seem to think that perhaps that part of my brain that would merge images has been damaged. I have had am MRI done recently, and will have comparisons done of an earlier MRI and that of a normal brain, to see if there has been improvement.
As for progress. I suppose there has been some, but hard to know how much or what has improved.
Regarding your progress. I would recommend two things that I have done. One, and this may be optional, but subscribe to Trubrain supplements. This next thought should be something you should do. Participate in Lumosity. The brain games that they have exercise everything from basic math to memory and decision making. I strongly recommend this.
hello, thanks all. I appreciate the thoughts, it would be great to post whats the situation post AVM, and for so long, etc. Interesting to read, and hopefully some can be useful for others.
As for greg - Trubrain supplements, you use this supplement? Does it really hek lp you?
As for Lumosity, etc - theres been clinical reviews just lately that this sort of math games etc, may not too that much after all. I would prefer to keep my health more important - a run, cycle, keep the fitness a lot more important?
Hi Greg, it will be 5yrs this December since I had a crainiotomy and had my AVM removed from my left temporal lobe.
I have never been stable since, I have been on at least 3 AED’s and up to 5. I have intractable partial complex seizures until recently. I recently developed a facial twitch which has been diagnosed as EPC, which is epilepsia partialis continua. I have spent 2 weeks in the neuro care unit at Dartmouth Medical Center, had every test imaginable and the Drs. still don’t know what to do.
Up till now I have been unable to return to school to be a Geophysicist.I have trouble remembering new information and everything else. I have never given up hope of some kind of normalcy but it really isn’t looking to good right now. I will probably have at least 2 more surgeries. Not afraid of the surgery just the road back to at least where I am now.
I conmend you for your hard work not letting this define you. Good luck with your future I wish you the best.
Hi Rich, Not sure I can offer much in the way of advice for your situation, but I had to reply since you're a 20 year veteran. I just celebrated 21 years, post crainiotomy. Best decision I ever made. I had just turned 30. My bleed was a year prior to the surgery. 51 years old and still hangin' in there. We do share the aphasia though. And, like others have noted, I have good days & bad. I still experience weakness and motor skill issues on my left side but I do not let it stop me. I believe fitness is the path to recovery. It may not be like what we were used to doing, but you've got to keep going. As for "long term" experience, I've found that inactivity will ruin you. It's very easy not to exercise but I've noticed my muscles atrophy when workouts are skipped over a long period. Walking becomes more difficult & the mood can darken. So, exercise, ride a bike, take a walk, but keep moving and get those endorphin's flowing.
Good Luck & be well,
Much respect,
Chuck
This is an inspiring story. I’m only about 8 months post-craniotomy, but share the same, maybe exact struggles as you when working. I’m a web designer/developer too. Crazy occupation when you have the deadlines and expectation to create code for whatever someone or yourself dreams up. #BRAINFADE! I don’t have much advice, but wanted to commend you in your perseverance for this extended time in getting back to your new normal. I agree with others who are taking the fitness route. Like Charles had said, what were our super intense workouts may not be the same, but doing something for yourself seems to still stimulate the endorphins that get you to a better place and outlook on everything. Good luck to you in the future and keep going!
I'm among the very fortunate who didn't experience a bleed. My AVM was discovered 1992 after horrible head-on collision resulting in my face being torn open when it smashed into my steering wheel. MRI of my head was performed. Doctors determined all is fine. To be thorough I got a second opinion. These doctors found my AVM. Can't get any luckier than that! Crainiotomy in June 1993. Took nearly 2 years to feel fully recovered. Have no noticeable side effects nor deficits other than a very very slight weakness on my left side. Since I'm left-handed I only feel it when I write or play the drums. Here I am 23 years later at 54. Life is good.
I also am among the very fortunate who didn't experience a bleed. My AVM was discovered because I was depressed. They did an MRI just to make sure there was nothing organic going on, and they couldn't even visualize the actual AVM at that time. They did 7 or 8 MRI's before coming to the conclusion that they had to do an invasive angiogram. UCSF and Dr Charles Wilson rock!
It is now 23 years later (1992 also) AND I AM ALIVE AND KICKING! I have chronic back pain that began with the AVM craniotomy, and some cognitive deficits that I am working on with luminosity. I have been walking with forearm crutches for a couple of years, and am in PT and OT to hopefully walk without them one day. But all in all, I wouldn't have wanted the alternative. It is good to be alive!
Hi Seercat, it is indeed great to be alive 23 years later. 1992 when my AVM was discovered was supposed to be a great year: graduating from college and I qualified for the Ironman Triathlon in Hawaii. I had been competing in them, along with 10k's, marathons, and other fun stuff since the mid 80s. The car accident ended my distance racing days sadly. But I'm at least alive to do other outdoor activities. I was in another accident in 1995. Hit by a drunk driver. Banged up pretty good. But got through that too. Only issues I have are headaches which are usually manageable. But at 54 I have all my hair, no weight problems, and still active. So no complaints. Keep looking forward. All my best to you.
Thanks Bill. Wow, you have been through a lot! And your still active!
I did a lot of horse back riding when I was younger. My AVM put a stop to that and to doing outdoor activities in general. I certainly can go for walks, and easy things like that. Osteoporosis has kind of limited me because of my back issues. 10 back surgeries! And I am vertical!
I have been a chronic PT consumer since my AVM and my back. It helps but is not the answer. I am looking now to swimming and other outdoor activities with people. The isolation has been tough.
Thanks to this site, the isolation is helped. I am 61, and have some issues with my weight, but a lot less so now than 30 years ago. I try to live by "no worries, no regrets." Stay active. Attitude seems to be hard for a lot of us, but is a lot of the battle. Sounds like you gave got the battle won on that front. Best to you too, Joyce
Holy moly! 10 back surgeries. Swimming is great exercise. No impact, keeps you moving and improves agility, good for cardio. You should absolutely do it. The key is to just get out and do it, consistently. I'm in Phoenix, Arizona. Pools are everywhere. I hope have easy access to one where you are. Stay positive. There are always many more things to be grateful for than otherwise.
Yep. Got a pool in my own apartment complex! I need a trainer though for direction. Good talking to you Bill. Let me know how you are doing from time to time. I am on and off the site. I find that too much reading about the subject overwhelms me. I start thinking of a relapse!