Hi all, thanks for this venue to ask, learn, grieve, vent, etc. we’re 3 weeks into pure hell now after our 10 y/o boy’s posterior fossa rupture, and it’s all we can do to stay afloat.
I’m so sorry you’re going through this. I was there in October, although my 11-year old daughters stroke wasn’t as severe, the fear and uncertainty and lack of understanding was overwhelming. Her AVM is 7cm and we have a long scary road ahead. While no story will be exactly the same, you will find so many who relate and understand and care. It was through this site we found hope and help, thanks to some amazing families going through the same thing. I will send you, privately, my information. The learning curve is steep and you will take in an enormous amount of information but it will stop being so overwhelming eventually. I promise.
While we live in Philadelphia, we travel to Standford Medical Center to see Dr Chang and his wonderful team. You also have Dr. Lawton at UCSF. You’re right near a couple of the best.
The brain is amazing and has the power to heal, especially in an 11 year old, but it needs time and rest. Try like hell to stay positive, BELIEVE he will get better and lean on others. My prayers are with your son and all of you in this difficult time.
It’s a very scary time but you and he will be ok. My son had a rupture at 6 years old and is now 10. You’re in for a long road but he will recover!
Nice meeting you all. I’m Zoe. I Got a gamma knife treatment exactly two years ago. The first half-year is worst time (anxiety, sleeplessness, no heat tolerance, and being unable to walk without a walker or walking poles, especially in the hot weather.) Now I take an outdoor walk daily trying to average 10, 000 steps a day. My only problem is balance sometimes feeling lightheaded, so I avoid bending my head often or turning my head too fast. Do any of you have experience of a balance problem?
OHH YEA, just a bit (a lot). Any time I change position I get the dizzies. First thing in the morning I have to give myself time, sitting on the side of the bed before standing. Even then I have to brace myself when I stand. Prior to all of this I just got up and moved. I did that, once, post surgery and found myself on the floor.
I’ll be watching TV and go to get up, I see stars, get all wobbly and have to brace myself for fear of falling over. It’s nasty.
Now I have to slow things down, stand and wait, then move. I can’t have my head below my heart or I get a headache from hell, so I need to use my leg muscles rather than my back to bend down and slowly, slowly.
But then that’s me, others look and wonder what I’m doing, but I have to do everything slowly now.
Merl from the Moderator Support Team
Thanks so much, Merl, for sharing your experience. I guess doing some of the Yoga exercises may help. Hopefully, this problem will disappear when the Gamma knife effects are gone after a period of 3 years.
Hey Zoe,
I’ll say it again. This whole recovery thing is slowly, slowly. My neurosurgical journey started back in the mid 90’s with my last surgery being only a couple of weeks ago, No.7, and to say it’s been a rollercoaster would be a massive understatement.
It used to be that if I wanted to do something, I did it. Now I have to plan everything and work within my body’s new limits. This has all been very foreign and I hate it, BUT, I know I have no choice in the matter. If I push those limits my body tells me “Laydown or I’ll put you down” and if I don’t listen it puts me down HARD. Don’t be doing that. Listen to your body. Some symptoms have become ‘normal’ (if you can ever call them normal, more like regular) but then there are some that are just weird, that seem to come out of the blue. They all have to be managed and if you find that yoga helps, then do it. What ever works for you. Some people make out they have all the answers. They don’t. You have to manage all of this for you, not anybody else.
Merl from the Moderator Support Team
Thanks, Merl.Hope you’re recovering well from your last sugery. Take care, Zoe