Is any one familiar with AVM or had a loved one with one?
- Thread starter dawn_mo
- Start date
get an "MRA"
I am sorry to hear about your grandson and I empathize. I spent 2 days in the hospital with my son last week. He is 7 years old and recently started having seizures and while we do not yet know the cause yet one of the concerns is AVM. The MRA I am told is like an MRI but specifically focuses upon the Arteries and Veins. My sister is a nurse and spoke to some doctors at her hospital who recommended the MRA. When we expressed this to one of the doctors treating my son, she balked and dismissed the idea but IMHO it is based upon the HMO that we belong to that is very reluctant to provide anything they can get away with not providing and instead like to just opt for any kind of pharmaceutical option. We have to wait several months even for our appointment with the pediatric neurologist and the first MRI. Hopefully your grandson has better options.
I am sorry to hear about your grandson and I empathize. I spent 2 days in the hospital with my son last week. He is 7 years old and recently started having seizures and while we do not yet know the cause yet one of the concerns is AVM. The MRA I am told is like an MRI but specifically focuses upon the Arteries and Veins. My sister is a nurse and spoke to some doctors at her hospital who recommended the MRA. When we expressed this to one of the doctors treating my son, she balked and dismissed the idea but IMHO it is based upon the HMO that we belong to that is very reluctant to provide anything they can get away with not providing and instead like to just opt for any kind of pharmaceutical option. We have to wait several months even for our appointment with the pediatric neurologist and the first MRI. Hopefully your grandson has better options.
G
Guest
Guest
no personal experience but here are a couple links that may help
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001783/ http://www.ninds.nih.gov/disorders/avms/avms.htm
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001783/ http://www.ninds.nih.gov/disorders/avms/avms.htm
melissa-dallas
Well-known member
My Mom has one in her.neck
It was discovered after testing because the doctor thought he heard a bruit on an exam. Hers was determined to be pretty much benign.
It was discovered after testing because the doctor thought he heard a bruit on an exam. Hers was determined to be pretty much benign.
dawn_mo
Well-known member
I am sorry, I should have explained more.
My grandson is in the Pediatric ICU at KU, which is a teaching hospital in KC. He has had two bleeds from this already and has had a whole slew of tests. The doctors are now trying to put together a plan of how to proceed. It is too deep in his brain for surgery, so they are looking at their other options. He has been in ICU since last Thursday. KU is a teaching hospital and I am happy with the care he has received so far.
I was hoping that someone has gone through something similar and could share their experiences with it. Thank you for your prayers and please keep them coming. Dawn
My grandson is in the Pediatric ICU at KU, which is a teaching hospital in KC. He has had two bleeds from this already and has had a whole slew of tests. The doctors are now trying to put together a plan of how to proceed. It is too deep in his brain for surgery, so they are looking at their other options. He has been in ICU since last Thursday. KU is a teaching hospital and I am happy with the care he has received so far.
I was hoping that someone has gone through something similar and could share their experiences with it. Thank you for your prayers and please keep them coming. Dawn
G
Guest
Guest
try this
highlight the link, right click, copy, then paste into a new browser search
The links didn't work from my post here but when I did as described above it worked.
Email me at cindydvm@hotmail.com if I can be of further assistance.
Good luck - I'll be thinking of you and your family
highlight the link, right click, copy, then paste into a new browser search
The links didn't work from my post here but when I did as described above it worked.
Email me at cindydvm@hotmail.com if I can be of further assistance.
Good luck - I'll be thinking of you and your family
Dawn very sorry to hear what you are all going through
my suggestion would be to get into immediate discussion with a support group specific to pediatric AVM. I suggest this not to boost your morale but as a step to finding answers and potentially solutions. This is the only thing that helped us in understanding and making any sort of progress with one of our children having Lyme Disease and subsequent medical problems as a result.
I found this:
http://www.taafonline.org/pr_therylanproject.html
http://www.taafonline.org/pr_therylanproject.html
my suggestion would be to get into immediate discussion with a support group specific to pediatric AVM. I suggest this not to boost your morale but as a step to finding answers and potentially solutions. This is the only thing that helped us in understanding and making any sort of progress with one of our children having Lyme Disease and subsequent medical problems as a result.
I found this:
http://www.taafonline.org/pr_therylanproject.html
http://www.taafonline.org/pr_therylanproject.html
mariadnoca
Moderator
(((Dawn_MO))) Sending thoughts and healing vibes to you and yours.
Very familiar (more)
My son, 14 years old, had a sudden AVM 10 years ago. Neurosurgery was done immediately but the damage was too great inside the brain and he was declared brain dead. Before this had happened, I had brought him to numerous doctors, neurology asking for an exam because he was complaining of headaches. I now know that had they listened to me he could have possibly been saved with surgery. I wish you the best of luck - but please get this checked out immediately.
My son, 14 years old, had a sudden AVM 10 years ago. Neurosurgery was done immediately but the damage was too great inside the brain and he was declared brain dead. Before this had happened, I had brought him to numerous doctors, neurology asking for an exam because he was complaining of headaches. I now know that had they listened to me he could have possibly been saved with surgery. I wish you the best of luck - but please get this checked out immediately.
melissa-dallas
Well-known member
I'm sorry. You must all be so scared thinking of you.
dawn_mo
Well-known member
Thank you, Susan.
I am so sorry for your loss. The hospital he was at originally thought it might be meningitis, so we were waiting on the results. He started seizing on the way to get a cat scan. They transferred him by ambulance to KU in Kansas City, thank goodness! He is receiving wonderful care there and will be undergoing a procedure on Monday morning. My stepdaughter is then going to take him to the Mayo Clinic in MN for the next step and second opinion. I will let you know how everything goes. Thank you for sharing with me. Dawn
I am so sorry for your loss. The hospital he was at originally thought it might be meningitis, so we were waiting on the results. He started seizing on the way to get a cat scan. They transferred him by ambulance to KU in Kansas City, thank goodness! He is receiving wonderful care there and will be undergoing a procedure on Monday morning. My stepdaughter is then going to take him to the Mayo Clinic in MN for the next step and second opinion. I will let you know how everything goes. Thank you for sharing with me. Dawn