My son has lost so much strength in his whole body.
He’s doesn’t seem like the same person anymore, he has inappropriate behavior , the tnings he say is so embarrassing.
He is restricted to the wheelchair.
I feel like I’m all alone.
My son is in a long term care home, he doesn’t like it, wants live back in the community, i feel where he is is much better for him, nurses and doctors are all there, how can i convince him he needs to stay where he is.
His AVM is really bad
Is others who end up this way?,i feel like my son is the only one.
I have cried every time after i visit him,i don’t know what to do.
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Very sorry to hear,
There is no usual when it comes to “this” - some slip by until the very end of life to discover that they have been living with a AVM. Some, well - aren’t so “lucky”
There is no right or wrong to this, no solidified answer - just do the best you can
I wish you/him the best - maybe someone else here will have any other advice
Welcome. As a parent I can only imagine how impactful this is for you. Did your son have a rupture and that is when the AVM was discovered? The areas of the brain impacted indicate the type of deficits produced, including several related to behaviour and impulse control. Where is is his AVM located? It is concerning for sure if there is negative changes in his health. Have any treatment options been explored or other opinions been explored. There are several within Canada that will accept inter provincial referrals, and many in the US that will provide an opinion for a very reasonable cost.
We have a lot of experience here so I hope we are able to pass along some of our collective experiences and maybe suggestions. John.
Hi. Welcome to the forum!
If you can tell us a bit more about his condition and if / when / how he was treated, we may be able to offer some thoughts.
For the moment, my thoughts are that people do struggle with their emotions, or say inappropriate things when there is damage to certain parts of the brain. Also, damage can be caused by a bleed or due to the necessity of getting to the operation site: perhaps the most invasive is when you have a craniotomy. Recovery from a bleed takes a very long time – perhaps a few years – but some recoveries can be very good, even though at the start it seems hopeless.
How optimistic are his doctors? Have they indicated that he should get better with physiotherapy (for his bodyweight) or better in other ways? They will be best placed to give you a view.
Does he have a programme of therapies to help him regain strength? Does he have any other shortcomings that he is having therapy for? It is often important to use the rehabilitation therapies in order to recover as well as possible.
Very best wishes,
Richard
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Back in 2020, my son had a massive bleed and swelling on the brain.
Every time he has a rapture the blood goes right down to the brain stem, so that damaged alot of his mobility.
He woke up one morning couldn’t walk, he been in a wheelchair ever since.
He has no strength in his left arm and hand , he can’t lift it up,his right hand has lost alot of strength, he can’t hold things very good anymore.
He has trouble feeding himself, he makes a big mess .
I can’t even take him to a restaurant anymore.
His impulse thing is damaged too.He keeps thing he can do for himself but i know the doctors know that he can’t.
Physiotherapy does not help him, when was first diagnosed, the surgeon said it was to dangerous to operate, he would have died.
The doctors have said he will never get better, coz where it’s so far down in his brain.
Thats the rest of the story about my son and he’s only 24 yrs old.
.
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Yes, that is a very sad story. My experience of reading round here is that a bleed or surgery around the brainstem is the most dangerous, the most difficult, the most liable to an injury. And his bleed being about 4 years ago is also quite some time ago.
Thank you for sharing. I don’t have any great ideas, I’m afraid.
Do you find some things you can do with your son? Some things he enjoys?
Lots of love,
Richard
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Where are you located in what I refer to as the granite planet. I grew up in NFLD, graduated High School there and am still connected to one of the greatest places on earth with amazing people.
I think of things to enjoy together, beautiful places and sights. I can’t imagine the challenges you are experiencing, and so caring. In such a beautiful place it would be great to find ways to spend time and connect. John.
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@Simba900 I am so sorry to hear about your son. When I had my massive stroke my personality changed due to major brain damage - I did not have a bleed - I became actually super mellow - I had to relearn how to walk and talk again and my left side was paralyzed. I had to do a lot of work to get better. My basal ganglia was damaged. I still have brain pain every day and occasionally loose my balance. I have insomnia . I was 43. I am treated at Stanford. I was told that the earlier we have damage the better chance of recovery. Stanford as well as other places are doing trials with stems cells to help bring back movement and it has been helping esp in people with TBIs. It was a miracle that I survived my clots and got better - Dont give up hope. Part of recovery is accepting our new self and then striving to get back to our old self. Take time for yourself as well care giving can be so stressful. There are caregiver support groups. Here in the states we have social workers and I am sure you must have something like that in Canada that can assist you… We are hear for you.
Hugs Angela
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I’m sorry to hear about your son and as a parent really feel for you… have you considered getting any other opinions on the treatment of his AVM?
Sending prayers to you and your family… God bless!
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