Comment

Comment by Thomas King on March 16, 2010 at 10:51pm

Hi Abby's mom....I would certainly look for other opinions, my son had the very best doctors in NYC, Columbia Prespyterian. Dr. Philip Meyers and Dr. Richard Anderson, along with the many nurses and other specialist that made us feel like we were the only patients in the hospital!! It is so important to feel comfortable and that they are acting with the highest sense of urgency for your child. Andrew will be 4 in May and we owe it all to the doctors and nurses. You're in our thoughts and prayers.

Comment by Melanie & Joshua on March 6, 2010 at 8:45pm

The physicians names? From Boston? Dr. Darren Orbach, Dr. Edward Smith are the surgeons at the vascular anomolies clinic that did our son's surgery, have you specifically talked to them or someone from the clinic?

Comment by Abby's Mommy on March 6, 2010 at 8:31pm

Children's Hospital in Birmingham Alabama

Comment by Melanie & Joshua on March 6, 2010 at 8:18pm

Who are you talking to in Boston?

Comment by Melanie & Joshua on March 6, 2010 at 8:17pm

We flew 14 days after surgery from Boston to NC. He has always had an AVM in his foot. The one in his brain/spine could have been there since birth or it was acquired, they can't say for certain.

Comment by Christine on March 6, 2010 at 10:58am

Dear mommy,
Your page has really moved me. I flew before I knew about my avm but since I have had it removed my neuro will not release me to fly. He said I have to do it at my own risk. I would contact a neuro and seek their opinion. I truly hope everything works out for you lil girl and Ya'll will be in my prayers. God bless you.

Comment by Jeramy Williams on February 18, 2010 at 9:49pm

I FLY TO CALIFORNIA FOR TREATMENTS AND DO NOT HAVE ANY PROBLEMS. I DO THINK THAT YOU SHOULD KEEP LOOKING FOR SOMEONE ELSE SECOND THIRD FOURTH OPINIONS I HAVE SPENT A LOT OF TIME AT HOSPITALS ALL OVER THE COUNTRY AND STANFORD IN CALIFORNIA WAS GREAT AND DUKE IN NORTH CAROLINA WAS TOO

Moderator Comment by Louisa on February 14, 2010 at 6:59am

Mom, while I believe all we can do is trust the doctors, I would get another opinion. She's a young child and we don't know how large her AVM is and where it is in her brain, but I am a strong advocate of second opinions. By the way, I've had an AVM for 59 years and have flown around the world and didn't get a brain bleed from flying. I flew 5 months after my brain bleed too. I got my brain bleed from cleaning my house, so I think if you are going to get a brain bleed, it happens when it happens. Hang in there. An AVM Survivor needs to have an advocate (Abby's Mom) that fights for Abby! Doctor's sometimes are too busy to fight for us...you as her advocate have to fight for your child! Good luck!

Moderator Comment by Gordon D on February 12, 2010 at 11:13am

I was curious about the oxygen during flights so I called a couple airlines ,they told me that medical oxygen was a doable option with there company.So I see no reason why AVMers can't fly with the right arrangements. As far as medical helicopter transport ,the patient is on oxygen all the time anyway,and the exposure is so short , there no reason not to use one .

Moderator Comment by Gordon D on February 11, 2010 at 2:28pm

The pressure drops from 14.7 psi at see level to 10.9 at 8000 ft which is what a commercial aircraft is pressurized at depending on the weather.

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