Thanks, Allison!
That makes me feel better, too. I'm still hoping for improvement and now I have even more hope hearing your story.
Hi AJ’s Mombre. It has been 1 year and 3 months since my embolisation, and I continue to make improvements. When I was going to outpatient speech therapy, I only went 2 times a week for a total of approximately 30 sessions. I only did 5 OT sessions, and 10 PT sessions. Don’t get too hung up on the one-year mark (it isn’t six months-it is a year). Even some Doctors admit you still make progress after a year. Most others will agree you can make progress up to 10 years. I feel important for AJ to get plenty of sleep and to have some down time. The injured brain needs rest so when I was tired, I slept. I was so exhausted after my therapy sessions that I would come home and nap. AJ may not be as tired because he is young(I’m 52). The fact that you have a positive outlook on his recovery will make him have a positive outlook. Good luck to you and AJ. We are all rooting for him.
The recovery timeline is not the same for everyone and their are some many factors. I did PT,OT, and speech therapy for many years 5 days a week and I went to the gym too. I was 17 when my AVM happened and being active physically and mentally(I went back to school).College was very tough at first,even taking just One class at a time then I started to take more and more at the same time.Stretching is key too! Does he have muscle tightness? I still have that even after more than 8 years post AVM. I take a very low dose of muscle still.
-Matt
I've been reading all of the responses, and I'm impressed, encouraged, and amazed with everything I've read. My initial event was June 26th of 2007. I still have some short term memory issues, and some loss of vision from the left feild of both eyes, but even after all these years I feel like I continue to improve.
Mike "Gordo" Gordon
Hi Mike, Well, coming from someone who had her craniotomy in February of 2003.... I couldn't agree more! Unbelievably, it will be "TEN YEARS" since I had my surgery on February 4, 2013... and still, to this very day, I continue to see improvements! The improvements are things that "I" notice... little "wins" that I see within myself in terms of remembering where I parked my car, or recalling something that happened earlier in the day... things that I used to think that I was going to have to "accept" as a part of my disability. I personally believe that "we" (those that have brain injury) should continue to push ourselves and continue to strive forward... I know that my entire perspective on what my limitations are has entirely changed over the years (post surgery)... :o)
Hi AJ's Mombre - I agree with others on here - recovery is different for everyone - probably not what you're looking for, but, recovery time and patienceof recovery aren't very much fun and aren't too glamorous =)
It's a pretty safe bet that your child will never be completely the same, but the really good thing is that he's really young, so he's probably more flexible in re-/defining his "self" and therefore may not be TOTALLY effected by the process - but, again, it really does depend. Regarding possible assistance he'll need with school, there should be a lot of resources for him.
Something that's important for him to learn - whether affected by AVM or not - is that of his worth or value - he'll find this important eventually...hope this is the right article =)
http://www.mindbodygreen.com/0-5850/What-I-Have-Learned-From-My-Disability.html
Hi AJ's Mombre
I had to weigh in and agree with Georgia. I'm 18 yrs post crainiotomy and still getting better. All the re-hab & therapy got me back on my feet (literally) but the out patient therapy was useless. The therapists were afraid to push me too hard. I was a gym rat prior to my surgery and wanted to return as best I could to weight training. So, after getting my doctors blessing, I found a trainer and asked him to challenge me. I think we both knew that my recovery was going to be limited but I didn't want to look back on my early recovery time and wished I had worked harder. So, don't put a time line to his recovery. I wish all the best for your son. Good Luck, Charles
truly, the plateau doctors describe is mostly just because few people continue to work intensely on improvements it truly is just boring and grinding to keep up with hours of tedious, repetitive therapy. However, if you do, you'll continue to watch cool improvements. The biggest challenge is the on-going time and mental commitment to continue to work hard to create those small, incremental improvements. I had amazing improvements throughout my first two years, and after that I find the bigger challenge is just the motivation. I was at the 'remarkable' improvement about 1.5 years later, and had mostly physical issues, which I assume is easier
My bottom line is there is no clock, and I DID have that fear because they told me that as well. Simply, it's not true. You simply get sick of working so hard, and it's key to track your wins, to reward yourself for the improvements. Lots of rest too.
I will say the early, dramatic recovery moments were awesome to enjoy, but I think there's two ways to do the on-going recovery. You can do spurts of intense therapy or workouts, or just an on-going workouts consistent therapy or workouts. If he can, do something fun not just more squats and lunges. Your brain works with repetition but you need creativity to keep it fun. Video tape it, if you can, I wish I had. Really is an amazing journey.
i am 52 years old. i found out about my a.v.m. when i was 18 years old. i had a subarachnoid hemorrhage with rupture. left deep frontal area ext. into the basil ganglia. lucky for me it stoped bleeding. on june 2nd 1982 they did surgrey. i had a right sided neglect on the right side. i was aphasic with visual problems.tell your 16 yr. old that he will be improving through-out his life. before surgery i was rt. handed. i had streath in my arm but not in my fingers. i am left handed know. know work at st. johns hospital behavior med.dept. i have been working for 27 years. every time i look in the mirror i see the scar, ear to ear. thankful i still have my hair. i would say what really helped me was my Faith in God. i still pray many times a day for my wife and kids and i thank God for pulling me through.
..Steve
Hi AJ I had surgery five years ago and every day I see a little more improvement. I had intense therapies from September until December when I finally began walking again using a walker. The first six months is where I seen leaps in my progress and after that small and lenghly progression. The key I think is to keep moving anything that you can.
I remain frustrated at times but I walk fairly well with a leg brace and cane. I also drive and nobody thought I would ever do that again. It really is individual but if you fight hard enough you and focus you will succeed. Thank you Butterfly
Thanks Ron. I looked into a personal trainer and found one that I suspect will work wonders with my son when he is somewhat stronger and more stable. i also discussed it with him and he is stoked. Appreciate the wonderful advice.
Yes this is so true. He has excellent drive and determination and I suspect much of that I can contribute to his athleticism. Thanks :)
Thanks Paul. I am glad to hear that you are able to do the things were able to do before. Luckily AJ's speech therapy has been beneficial; it is more an issue of memory. He has a long road ahead of him in hos physical recovery but is making improvements daily and I am very optimistic of what the future holds.
Anita I couldn't agree more with you on the aspect of babying him. I have done my best to encourage his independence and not baby him. It is however something I have to strongly discourage when it come to my parents (his grandparents) but I do not want to take away from their role nor dent them to "spoil" him as that is what grandparents do best. I just do not want them to hinder him. It is a constant balancing act.
Thanks so much Kyle, what an excellent response. It seems as if you have really been through it. I wish you the best.
I appreciate everything you said. I am going to take you advice on seeking professional help especially in the area of a neurological psychiatrist that specializes in this area. I am concerned because I still see very little emotion (smiling, laughing) when he expresses himself.
I will continue to do as you have and educate myself in order to better my part as his caregiver and of course as his number one fan, I can only hope with this knowledge and faith in God above that I will be able to provide him with everything he needs.
Thanks Raf. It sounds like you are at a very good place in life and that is very encouraging. I like your perspective on breathing, relaxation, and meditating.This may be a beneficial tool for him. I appreciate your well wishes and hope all the best for you as well.
Thank yo Michele. This is such positive information for me by your personal experience alone. I completely agree with you about pushing your self and not setting limitations. I am considered the bad guy often times in my family because I do push my son. I have found though that it doesn't take much and I feel like it is important to insure that he in turn continues to push himself. Does this mean that I have been his best bud and never got on his nerves??? Quite the opposite. But my son thanks me frequently and I know he appreciates me and all I do for him, even when I do get on his nerves.
Good luck to you in your continued recovery.
Thank yo Travis. I love your analogy to a child's question in comparison to the one I pose myself. The small victories to me bring so much joy and I try to remind my son on a regular basis just how far he has come and how bright the future will be. I have learned in this short amount of time not to be rigid with his schedule but compromising. I am learning what best suits him and what works the best.I am a mother and I simply want the best for my son. I am a fan of knowledge and information but recently I have learned how to distinguish what is applicable and important and what is unnecessary and not worthy of my time or energy in worrying about.
I am impressed and encouraged by the accomplishments you have made and you. You should be very proud of yourself. I pray you continue to recovery and wish you all the best.
Thanks Beans. What a wonderful perspective and it seems as if you have had very full life. It is highly important not to lose sight of the fact that my son is a miracle himself. I sometimes get wrapped up in the details of the present and worries of the future. that I lose sight of what God has brought him through already and just how far he has come.
It seems as if adaptability is key to functionality and quality of life.
I wish you the all best :)
Yes mam it is helpful and very encouraging. Thank you for your reply. I am learning how to tweak his schedules in order to accommodate his needs. It is a constant balancing act but it is definitely getting better with time.
His deficits include vision problems, left sided ataxia, balance and coordination.