I too was very athletic before my AVM burst near my cerebelum, and believe me, your son has that to his advantage. I give a lot of credit to my elementary school coach for getting me where I am today. He taught me at the end of a race or whatever it is, give it your best. It is true, your body does make noticable improvements for around six months, but only if you make yourself believe that's the end to improvement, will it hold true. I think your son is a fighter, and he won't let someone tell him what he can and cannot do. I was entirely tube fed after the six months, and my desision was to see a dietision for ways to eat orally and keep my weight. I practiced eating in private speech therapy and in doing this it helped me improve my voice and soft pallet. I still go to a special gym to keep fit and work on my balance.
Stay posative,
Alan
Good whatever John. A message from another John, all the way from Downunder.
As you say, everyone is different. However in my case things changed, very abruptly, two years AFTER the event. In my case the event was the AVM caused a *second* brain haemorrhage, in ten months! (It's a long story, which I hope you'll get to read about one day.) While the first haemorrhage was relatively inconsequential, the second brain haemorrhage was acute. Your enquiry now is taking me back to one of those times in a person's life which they will always remember ie. where they were and what they were doing. In my case, I was driving when "it" happened and something just seemed to click back into place. From that moment, I could not stop myself from saying, over and over again; "I'm back!"
For me, the second brain haemorrhage took me back to my very early years when I was first starting to learn how to live my life. This was back in the Sixties when, as it was for many people, OZ was such a different place, when values were very different and people generally lived their lives by decent standards of honesty, integrity, trust, reliability, caring, courtesy, respect and loyalty. By now John, you are perhaps realising your enquiry has really struck a nerve with me. Of course, I can't know if my changes are in any way applicable to your son. However the advice I can give, which I am sure of, is as follows.
(i) While of course it will be a frustrating time until then it is absolutely essential, and you can tell your son with complete confidence (whatever the changes will one day be) "it" *WILL* happen, for him.
(ii) Do NOT try to do too much to help. While it will make you feel good, it may make your son feel he is (obviously unintentionally), being pressured into getting better. Not only will you not trying too hard relieve any pressure your son may feel, it will also demonstrate your belief that there is no need (nor is there anything that can be done) to do anything because you KNOW it will happen, in time.
(iii) Be wary of (and I hope you never encounter any) self-serving doctors. In my case, I was forced to deal with the worst of the worst. Not only did he not tell me about any of the changes that I could expect, he also arranged for "blanket" protection for himself by telling me the minor damage the AVM had caused, before the acute haemorrhage, was permanent and so initially I was given no hope that things would improve. This was when my concerns were only minimal and they were subsequently dramatically worsened by the acute brain haemorrhage, which I was never warned might happen.
Apparently a doctor telling a patient not to expect any improvements (for anything) is an old trick. In that way, they assure themselves a patient won't come back in perhaps a year’s time complaining, "but doctor, you said I could expect some improvements to my problem". A doctor telling a patient there won't be any improvements is one of the truly great lies. Perhaps you know the others.
(iv) While I still have many problems eg. chronic memory loss, in particular short term ie. two or three seconds later, and problems with thought selection, I have learnt the best way to cope is to just laugh these off eg. “Oh no, not again!”. The other way I have learnt to cope is to tell myself “It’s only three seconds.” and then I start to count “One, two ..… “, until I correct what it is that needs correction. I have also taught myself how to see humour in what it is I’ve forgotten, or what I have done when I shouldn’t have, or any other trial generally. These days, my life is so full of humour which, usually, only I can see. Hopefully (if he’s not already doing this) your son will start laughing his head off AT you and then quickly add, “Oh no Dad, not you too!”. The most important thing to become very aware of is the need to simply ACCEPT! ACCEPT! ACCEPT! - whatever the trial of the moment might be.
(v) There is little that you can do, except being completely understanding of what might normally be completely unexpected behaviour from your son eg. one day, he might offer to do the dishes.
(vi) Don't allow your son to waste his time playing games that are on the Internet which are supposed to improve a person's mind. For your son these challenges can't be real because they are not real, in terms of your son's life. In fact, they are about as real as reality television. (Enough said!) If he to improve his ability to think, and concentrate, and remember things, why not get him to write a book. In my case, it will only take about five years and, most important of all, it will be real regarding the things he has to focus his mind on. In fact, I will even help him to get started. Perhaps, "It was a dark and stormy night and then Dad arrived home, late as usual." might help him to get started.
(vii) One last thing, don't allow him to overload his mind with audio distraction eg. Ipod etc. When he needs to really concentrate he needs all of his ability and audio interference, while pleasant in itself, will distract the faculties he does have away from the task at hand.
I’m sure there are other things I could tell you but, for the moment, that’s all??? I can think of. I hope it helps!
Recovery would vary depending on the location, hemorhage related damage if occured, post surgery changes. So yes its relative but some changes and improvement are rapid and depending on location some may take years.
Please ignore the statistics. I see miracles everyday. Here is one example…http://www.avmsurvivors.org/profile/LaneyMalon
If you read her profile you will notice that the improvements were made years beyond the initial bleed. I just recently met a man who had 4 strokes 20 years ago. He spent 17 years in a wheelchair. 3 years ago he started to walk again with a leg brace!
Please continue PT with your son. It really helps a lot!
I think what all this shows is that every AVM situation is different. I had my surgery at 63 and the docs told me young people generally recover better and faster because they push themselves harder (how's THAT for motivation?). They also said my therapy was to walk as much as my body would tolerate. 11 days later I was up to 6 miles a day. On day 12, I couldn't get out of bed. I don't think there's a general rule. The location, the severity, the damage all vary so much that no person's experience is like anyone else's. It sounds like you're doing everything that should be done. Only your doctors can tell you what's best in your son's case. It sounds like you are the best mom in the world. Just keep working at it and believing!
Susan
Dear AJ's mombre,
I had thought craniotomies went out of practice years ago. I had Stereo-tactic Radiation toget rid of my cranial AVM. I can't say it's an improvement, never having had the other. It hurt like Hell. And, in the end, it turned out that my doctors had f--d up and destroyed a benign organ. Well, that's my opinion, anyway. At the very least, they caused a multitude of problems where, previously, none existed.
In answer to your question, however, I believe the human body capable of recouperating from trauma years after the pain has been experienced. I, myself, am having reconstructrive surgery on my ankle next week and it will be over twenty years since my AVM-bleed. The tone has weakened my ankle muscles to such a degree that I cannot walk without my ankle turning in on itself and me falling. I've been wearing an AFO for 20 years, but, hopefully, the surgery will eliminate the need for it. If you'd pray for me, I'd certainly appreciate it. AJ is in my prayers.
Blessed be, Jan
Hello AJ'S mombre. AJ is very lucky having such a great family! I am so happy to read that you are giving him as much therapy as possible as this is what it's all about. As such a young man, he will recover much better than a "Mature" person! My crain was removed on the 8th July 2009. During surgery ny neuro-surgery found that my AVM was twice the size as shown on the MRI. So he had to remove some viable brain tissue as he couldn't stop the bleeding. Friends & love ones were told to get to the hospital asap as I would not survuve. Obviously I did survive and for me, this was by the Grace of God (and I'm not a "bible basher" giving my surgeon the extra skills to save me. I was in hospital till 29th September 2009 as I was in a coma for a few weeks and then in ICU for many weeks. I couldn't walk, talk, etc and I also have no memory of all this time. Every recovery is different and I had 10mths of rehab with occ & speech therapy. 8mths after surgery my surgeon told me that this is about as good as it will get. However, I was determined to do better & better. This HAS happened and whilst I have different issues, I can live alone and look after my self. No matter what, NEVER, EVERY, lose hope and "Keep on, Keeping on! As Barbara said, miracle happen here every single day & I thank God, my family & great friends and THIS SITE every day! I continue to recover and I'm not finished yet, even though I am now 58yrs (young) :). All the very best to you all! Lesley.S.
Thanks Gail...that does help. I have the utmost faith that he is going to do well because he has done exceptionally well so far. Of course I am his mother and somewhat biased. It is also encouraging that your recovery was positive without therapy. This makes me feel less pressure on those days that I may miss therapy with him. I feel like it is my duty as his mother and I am learning how to feel less guilty when I cannot do everything that I feel like I need to do in a single day.
Thank you Donna. This is helpful. I do believe that mans opinion is relative. I am very grateful for the surgeon that performed the operation on my son because he is very talented...but mostly because he is a man of God and took no credit for my surviving the surgery. I refuse to put limitations on my son simply because of general opinion or testimony. I am just curious of other peoples experience because it serves as a great comfort to me to have that commonality.
Thanks Chad for sharing your experience with me. I guess it is all relative to size, location, and surgery when it comes to recovery time and healing process. My sons deficits are more complicated but I am positive that he will be restored. So happy that you were able to return back to your life and have steadily improved since your surgery.
Thank you so much...it seems as if your symptoms post-op are very similar to those of my sons. And your reply is very encouraging. Thank you for the pointers and good luck in your recovery :)
Thank you Kyle for your reply. His bone flap was put back in place immediately following the surgery before he was ever stitched up. His trach has been out for over two months and he has made improvement since. My main concern is what area I need to focus on to best help him recover. I realize this will be determined by where he is lacking functionality and control. I will let him know. He is still having issues with vision so until this improves it is difficult for him using the computer.
Good luck with your next surgery and your recovery :)
Excellent advice...thank you!I have wanted to get him in a gym because he was used to weight training five days a week prior to his surgery. I am glad to hear that this route was beneficial for your healing.
I have not heard of someone using biofeedback, but did come across it in my research. We just started vision therapy...or will be next week. I have done some exercises pertaining to the vision at home. I am looking forward to learning more and was very pleased during his testing that he was able to correct his eyes when tracking which shows me that when he concentrates he is able to fix the problem
Thank you for the encouraging words..
My brain surgery was 2-1/2 years ago. Yes, the recovery early on was dramatic. I had to learn to walk, write, concentrate, work on my balance, etc. all over again. My recovery has been up and down...I'm still getting better but I still have issues. I think the biggest issue to overcome for me was emotional. There can be a lot of anger, gratefulness, depression, frustration...it doesn't seem fair, but it's also been such a blessing. Understanding and support is your main job with your son. I believe I'm still improving, but it's at a much slower rate now. Yes, help him with his therapy, but help him learn to love life and enjoy it. If there are deficits, he must accept them for the time being while always holding out hope that they will improve. He needs to find the joy in life as often as possible. His experience will make him a stronger more compassionate adult. Balance recovery with living life to it's fullest.
My husband had his AVM stroke in June, embolization angiogram in July. He started outpatient rehab last week. He has really productive days followed by a day or two being exhausted. People in our support group and a lady I work with who just told me she had a similar stroke three years ago, all tell me it takes between 6 months to a year to feel "normal" I'm just glad Victor is alive and well. Mind you, his worse judgement call was last weekend to ride his bike! He fell off and broke his wrist.
My AVM was in the brainstem (pons). Surgery at Stanford in Sept 2011. Post surgery, I had double vision for a month that eventually cleared. I needed a walker for 2 weeks, then a walking stick, etc. I did not have ANY therapy, I studied Martial Arts and weight trained extensively for 27 years prior to my surgery, I was nearly 44 when I had surgery last year. What I will tell you is that I found balance and coordination to be most challenging. SO i worked with a medicine ball standing on one foot than the other while moving the medicine ball into different positions(above head, rotate to side then in front, etc). Also try to lunge (http://en.wikipedia.org/wiki/Lunge_%28exercise%29) holding dumbells without falling to one side or the other.
I resumed Kung Fu on a limited scale 3 months post surgery (Dec 2011) that also pushed my balance and equilibrium even further. Use light weights to weight train and make sure AJ is NOT holding his breath while moving the weight the focus should be on equilibrium/balance and left/right symmetry.
Swimming is terrific, but may feel strange at first.
I am not sure what part of the Brain AJ's the AVM was removed from, he is very young which is a plus when it comes to nerves improving.
I am nearly 1 year post surgery now and still have slight burning up and down the right side of my body, but no one would ever know and I look and feel 95%.
Lastly, since my surgery I have gone through periods where I am extremely tired for a few days after which I seem to make some more improvement so ...rest is critical. If AJ is getting worn out, back off for a few days and let him rest more, take naps, etc. for a few days to see what happens. Recovery/improvement trends in the right direction but is a zig-zag, not a straight line.
Good luck to AJ.
hia i hope your son is getting on ok and doing well.i do my therapy twice a day every day its excercizes trying to bring on the symptoms so trying to get the brain to go down another route i am trying so hard and have been doing them since may but as yet no difference i had my bleed 18 nov 2010 then completet resection avm surgery a week later and yes i think things like taste, speech came back in first 6 months but the vertigo and walking is stuck with me and getting worse but i am 56 yrs old and guess that i was quite old to have this but have to be thankful i am alive and you cant tell anything is wrong when i am just sitting people say ;you look great;. well i am going back to hospital tuesdey for a new lot of excercizes so will see and i love swimming its nice to try and do the things i used to do but it just slower and i have loads of family but hard to try not to pack to much in coz it can get so tiring and people dont understand how it feels . good luck to you all sounds like your son is getting on really well thanks for your comments.
Hi AJ's Mama,
My name is Allison and I had an AVM Resection performed 7 years ago today. The AVM was located in my brain between the Frontal and Parital lobes and quite deep. It was told it was pretty big (just bigger than a golf ball) so the newer, less invasive procedures available at the time were not an option for me.
Now to the recovery. I lost all feeling, control and proprioception in the right side of my body. I could not walk or write but I could move my limbs. They just didn't go where I wanted them to when I did move them. Well, from wheelchair to walker to cane I had tremendous recovery during the first 2 years and I just sort of accepted what I was left with. Then I decided to fight harder and 5 years after my surgery and after falling down a set of stairs one more time I finally got additional physical therapy. It was different from the standard therapies out there and is called 'manual physical therapy' and it made a huge difference in my life. They pay attention to everything you do and make certain you can perform the physical maneuver accurately. Anyway, every year I have had some improvement and no matter how small I feel wonderful everytime I realize the new skills I have or the feeling that has returned. Today is my 7th birthday and I continue to expect to see results, no matter how small. So please don't let your wonderful boy give up or quit trying. Even the trying makes you feel strong and powerful.
Keep fighting.
Regards,
Allison
I am very impressed with the attention that you are paying to your son's recovery. The therapy he is having is much more than I had. My craniotomy was done 23 years ago and I'm still learning what's different. While most of my recovery occurred in the first year, I'm still improving today. Of course, I'll never have all the things I could have had if that AVM had never occurred. However, I'm doing much better than many people. I can drive a car and hold a job. I'm even married and got three kids. So, it's not always important to be back to 100% (an impossible goal), just to do well.
Your work with him sounds good for two viewpoints. As someone who had a craniotomy, I wish they had invented all this therapy. But the other reason is that I'm a father of two boys who are finally getting out of their teenage years. This therapy is keeping a close contact between the two of you, which is very important to maintain with a teenage boy.
Have you ever seen that Luminosity website? It's a little too hard for someone as old as me, but maybe your son could do better at these things? www.lumosity.com
Good Luck and keep working hard.