My Son Antonio

my son Antonio had a hemmorage on jan 7 2011…he past out but luckily we got him to Childrens hospital in pittsburgh just in time…they removed his bone flap and put in a shunt to relieve the pressure…we were in critical care for 20 days…he lost movement in his right arm and leg…but he has been doin great in therapy…he is now walking with help and moving his arm better every day…he has to have the avm removed…and we are doin that… this feb 15 2011…he is only 8 years old and is very scared but his mother and I havent left his side…we have been here 24/7…he is a great kid and we dont really know what to expect…has anyone had similar experience…thxs

Hi Al. You may want to join a sub-group on this site…Parents with AVM. Go to the main page…scroll down and look on the lower right hand side and you will find groups. You are no longer alone. Someone who lives in Greensburg PA just joined day before yesterday. My sister lives in Murrysville PA. I was based with USAir for 7 years in Pittsburgh.

Hi Al. Look up Nicole Zilli under members…she just joined recently. Click on members and you will find her!!! I know you are worried but believe me this ordeal is survivable. I am a prime example. There are close to 2700 of us on this site. I will be praying for you and your family!!!

thxs barb so nice to know more people goin thru this…

i work for usairways for 26 years …small world…

Barbara H. said:

Hi Al. You may want to join a sub-group on this site...Parents with AVM. Go to the main page...scroll down and look on the lower right hand side and you will find groups. You are no longer alone. Someone who lives in Greensburg PA just joined day before yesterday. My sister lives in Murrysville PA. I was based with USAir for 7 years in Pittsburgh.

Too strange…I am one of the recalled Flight Attendants. A family member had a health problem last year and I needed to return to work…to help out. If they had not become sick…I would not be on this site.

Al, I completely understand your situation. My daughter was almost 7 when she collapsed because her AVM had ruptured. She spent 21 days in the hospital, most of it in a coma. Then she spent the next month in a local pediatric rehab facility. My husband and I shared bedside opportunities. One of us stayed at hospital, the other stayed home trying to take care of kids and house.

Our daughter has been through two craniotomies, an eye surgery and countless trips to ER and hospitals. For mom and dad, take it a day at a time and say your prayers. Lean on family and friends to keep you going. That's the best way to stay positive for your son so he believes he will be OK.

One of our most positive experiences was with a neuropsychologist. The doctor did some testing and helped us understand my daughter's deficits and how to help her. Check around with your local Brain Injury Association and see of there's one nearby. They're the most wonderful, helpful people you can have in your corner right now.

Best wishes,

Tina

many of us parents have been through the same situations. My son's bleed did not leave him with any deficits. But the AVM had to go. The surgery is usually done after they do some embolisations. Have they spoken about that.

We are all in this together and I feel for Antonio and his family. I am a parent you can friend me and read my son's story.

My name is Diane Faherty-in group called parents of avm survivors, please join. Will say some prayers for Antonio.

Di

Diane,

That's the benefit of this site, you're right. Being able to talk to so many others who have been through the same thing. My daughter didn't have time for an embo, she had to go straight to emergency craniotomy.

Many prayers for Antonio and his family. It's reassuring for family and relatives to have this site to talk to others who can relate to the AVM, embo, craniotomy, rehab, etc. It's reassuring to talk to others who have seen all the stages and have come out the other side and are able to live their lives.

Diane Faherty said:

many of us parents have been through the same situations. My son's bleed did not leave him with any deficits. But the AVM had to go. The surgery is usually done after they do some embolisations. Have they spoken about that.

We are all in this together and I feel for Antonio and his family. I am a parent you can friend me and read my son's story.

My name is Diane Faherty-in group called parents of avm survivors, please join. Will say some prayers for Antonio.

Di

Hi Al, I hope that Antonio can muster up the courage and go into surgery with a positive attitude. I know that’s asking alot from an 8 year old, but I really do think it helps! Give him a really big hug from me, and good luck to you all!

Thxs Tina…so tough to be in the situation…He is having surgery on tues hoping for the best…

Tina White said:

Al, I completely understand your situation. My daughter was almost 7 when she collapsed because her AVM had ruptured. She spent 21 days in the hospital, most of it in a coma. Then she spent the next month in a local pediatric rehab facility. My husband and I shared bedside opportunities. One of us stayed at hospital, the other stayed home trying to take care of kids and house.

Our daughter has been through two craniotomies, an eye surgery and countless trips to ER and hospitals. For mom and dad, take it a day at a time and say your prayers. Lean on family and friends to keep you going. That's the best way to stay positive for your son so he believes he will be OK.

One of our most positive experiences was with a neuropsychologist. The doctor did some testing and helped us understand my daughter's deficits and how to help her. Check around with your local Brain Injury Association and see of there's one nearby. They're the most wonderful, helpful people you can have in your corner right now.

Best wishes,

Tina

Al, Without a doubt, Antonio will be in our prayers this week and especially Tuesday. Best wishes!!!!



Al Dinello said:

Thxs Tina.....so tough to be in the situation.....He is having surgery on tues hoping for the best.....

Tina White said:

Al, I completely understand your situation. My daughter was almost 7 when she collapsed because her AVM had ruptured. She spent 21 days in the hospital, most of it in a coma. Then she spent the next month in a local pediatric rehab facility. My husband and I shared bedside opportunities. One of us stayed at hospital, the other stayed home trying to take care of kids and house.

Our daughter has been through two craniotomies, an eye surgery and countless trips to ER and hospitals. For mom and dad, take it a day at a time and say your prayers. Lean on family and friends to keep you going. That's the best way to stay positive for your son so he believes he will be OK.

One of our most positive experiences was with a neuropsychologist. The doctor did some testing and helped us understand my daughter's deficits and how to help her. Check around with your local Brain Injury Association and see of there's one nearby. They're the most wonderful, helpful people you can have in your corner right now.

Best wishes,

Tina

Hi Al. I will thinking of your son on Tuesday!

Hi Al, My son had a bleed during an embolisation on his AVM. Son was 10yrs old at the time. The bleed affected his right side. Went thru years of therapies. Didn’t regain much, but we did not let that get us down. We just adjusted and moved forward.

Son is presently 21yrs old and in college. He is not the best student and doesn’t make the best grades, but neither did his father :wink: Son has very little use of his right hand/arm. But he plays in the marching band and percussion ensemble on full scholarship. He plays the big bass drum one handed.

As someone else stated, make sure after surgery, that you all find a qualified neuropychologist as part of your son’s medical team. Very important to let this person help you locate and be aware of any deficits that your son may have in the future. Not saying that your son will have any! But find out if there are any and that will help you all adjust son’s life to compensate. Don’t and I repeat don’t let the supposed know it all educators put your son into special education unless you think and your doctors think he is not able to do otherwise. That is one issue I fought for my son for years. The educators all believe just because son had suffered a stroke, did not walk and maybe was just a bit slower than the other kids that he should automatically be put into special education and not be allowed to educationally compete with the other kids. Again I am not saying that is what will happen in your son’s case, but be prepared for it.

Also, find family members, co-workers, employer, friends, church and any organizations to help you all. They are out there but you have to be brave enough to ask. Don’t attempt to manage this by yourself. You’ll be surprised how may wonderful people are out there, that will actually help.

Last, I know you all are scared to death right now! Take it day by day! Know that your son’s MD’s are truly going to do everything they can! Will say my prayers for you guys!
Louis

Truly thxs louis…there are very many nice people who have stepped up…our community really have rallied around Antonio…it seems like everyone wants to help…our support system has been great and this web site is off the charts…Surgery is tom so we appreciate your prayers…

Louis Ladner said:

Hi Al, My son had a bleed during an embolisation on his AVM. Son was 10yrs old at the time. The bleed affected his right side. Went thru years of therapies. Didn't regain much, but we did not let that get us down. We just adjusted and moved forward.

Son is presently 21yrs old and in college. He is not the best student and doesn't make the best grades, but neither did his father ;-) Son has very little use of his right hand/arm. But he plays in the marching band and percussion ensemble on full scholarship. He plays the big bass drum one handed.

As someone else stated, make sure after surgery, that you all find a qualified neuropychologist as part of your son's medical team. Very important to let this person help you locate and be aware of any deficits that your son may have in the future. Not saying that your son will have any! But find out if there are any and that will help you all adjust son's life to compensate. Don't and I repeat don't let the supposed know it all educators put your son into special education unless you think and your doctors think he is not able to do otherwise. That is one issue I fought for my son for years. The educators all believe just because son had suffered a stroke, did not walk and maybe was just a bit slower than the other kids that he should automatically be put into special education and not be allowed to educationally compete with the other kids. Again I am not saying that is what will happen in your son's case, but be prepared for it.

Also, find family members, co-workers, employer, friends, church and any organizations to help you all. They are out there but you have to be brave enough to ask. Don't attempt to manage this by yourself. You'll be surprised how may wonderful people are out there, that will actually help.

Last, I know you all are scared to death right now! Take it day by day! Know that your son's MD's are truly going to do everything they can! Will say my prayers for you guys!
Louis

Hi Al! I just read your story and I have a daughter who had a bleed in jan 09 and we are from pittsburgh, pa. We had gamma knife done feb 09 and she is having her three year follow up feb 21 2012. I am very nervous. I am not hopeful that the AVM will be gone base on her last MRI. How did your son do last February with surgery and who did you get to do the surgery? I am probably going to consult Dr. Stephanie Greene at children's hospital of pgh.