How long between diagnosis and treatment?

The doctors have decided that surgery is the best way to treat my daughter’s AVM, which was discovered after a hemorrhage in late February. We are waiting for paperwork that will allow a surgeon from another hospital to come and assist with the surgery. It is so hard to feel so helpless. Of course my biggest fear is that she could have another hemorrhage while we are waiting for surgery. How long did you all wait between being diagnosed and getting treatment?

it was about a 3 week wait since my diagnosis, 4 weeks all up since the hemorrhage. I remained in hospital during the wait, which made it a bit easier for my family to deal with.

A good feeling to know is that the chances of another bleed is extremely slim, at least that’s what we were told.

Hope the best goes for your daughter.

My daughter’s diagnosis was Aug. 2 of 2009, and her craniotomy was Jan 21, 2010. The waiting was the hardest part. We had to wait for the blood to be reabsorbed from the bleed, then wait for the angio, then meet with DR. then wait for outside consults (2nd and 3rd opinions.) We then traveled to meet with one of the other surgeons giving a consult, at the recommendation of our surgeon. By the time we decided on treatment, it was Thanksgiving, so it got pushed to January, partly because of scheduling the doctor for the embolization to occur one day prior to the craniotomy (and also because of Christmas.) As I said, the wait was horrible, but was necessary to cover all of the bases.

I had to wait over two months from the initial discovery of the bleed, they had to wait for the swelling to go down and the blood to be reabsorbed. I found the recovery and waiting the hardest part too, was scared of having another hemorrhage as well, but in the end was glad I waited:). Really hope everything goes the best for your daughter and to have a successful surgery:)

Ryan had his bleed on 2/27/10, and we’re still zeroing in on the treatment. He will likely have surgery in July.

My daughter’s diagnosis was made (ironically) on April 1 after a 3-month illness including headaches, confusion, exhaustion and finally, vomiting. She spent 3 weeks in ICU, had a craniotomy on April 21 after a scan showed the bleeding had not reabsorbed and was discharged 3 days later after a successful AVM removal. Wishing you all the success in the world, it’s a tough time but we are an example of an amazing outcome.

My AVM was discovered on Nov 18 09. I had my first and only embo on Dec 8 and my crainiotomy Jan 21 2010. I am glad everything happened within 2 months. The wait would’ve driven me up a wall! I was in the hospital for 12 days after surgery. I had a bleed during my 1st post op angiogram so I assume that was why I was there so long. Originally they said I would be there 3-5 days. They also said my surgery would only take 5 hours and ended up lasting just shy of 13 hours. I hope that your wait isn’t too much longer. My prayers well wishes and good vibes are all yours.