A year ago grandson Ben was declared to be cured of a dural arteriovenous fistula in his brain…
…but some problems have recently arisen, and his dad had to contact Dr. Berenstein in New York, the doctor who performed the procedures that saved Ben’s life. Dr. B. wants Ben to have an MRI scan (Magnetic resonance imaging) and an MRA scan (Magnetic resonance angiogram) as soon as possible. Those tests are scheduled for Friday.
It goes without saying that we are frightened, especially since Ben was doing so well and had been considered to be completely cured. Our family is asking for prayers for Ben and for healing thoughts to be sent his way. If the results of the scans are serious, he will have to make an immediate trip from his home in Georgia (or maybe even from Florida where he will be vacationing next week) to New York City.
My long-time blog followers know Ben’s story. For my new followers and casual readers, I will give some background:
Grandson Ben’s journey began in 2014 when, at the age of 3, he was rushed first to Erlanger Children’s Hospital in Chattanooga, TN and then to Scottish Rite (Children’s Healthcare of Atlanta) in Atlanta, GA where he was diagnosed with dural AV fistula, a vascular malformation in his brain. Although doctors at Scottish Rite diagnosed the condition, they honestly admitted they could not treat it. At Emory University Hospital in Atlanta, doctors told the family that without treatment Ben would die and that they could do neurosurgery, but the odds were not good. We were told that Ben had a 50% chance of suffering a stroke during surgery or that he could die on the table.
Ben’s dad contacted Dr. Berenstein, the New York physician who pioneered the procedure that would save Ben’s life. Dr. B. said Ben would not die, and the chance of his having a stroke was only 5%, not 50%. Just after Ben’s 4th birthday, Dr. B. performed two endovascular surgeries, the first to place tiny platinum coils in the fistula, and the second to further close it off with medical grade “super glue.”
The annual check up a year later showed that the original fistula had reopened, and a new fistula had formed. Dr. B. again performed surgery in what was described as a life-threatening situation.
Last year Ben, then 6 years old, underwent a cerebral angiogram as part of the yearly check up. While he was in recovery, his parents received the good news. The original fistula was completely gone. The blood flow had been re-routed. The new fistula that was developing the previous year also was gone as a result of decreased pressure in the brain.
But now we don’t know what to expect.
Please remember Ben on Friday and send your thoughts and prayers his way.
He has had a good year since being pronounced cured and recently completed first grade in school and celebrated his 7th birthday. He is a bright little guy who enjoys school, plays sports, loves music, and has a strong personal religious faith.
A few photos taken by Ben’s mom as he finished up the school year…
With his silly glasses and the little girl who has been his “girlfriend” since pre-K
Last day of first grade
And a few birthday photos…
The birthday party featured a water slide and other outdoor water fun
The party had a Blue Angels theme. The Blue Angels are the flight demonstration squadron of the U.S. Navy.
Ben’s most treasured gift was a flight suit like those worn by the Blue Angels aviators. Later, he was very excited to receive a surprise package from a former Blue Angel !
This precious child means the world to so many people. We appreciate your healing thoughts and prayers, and we pray that the symptoms Ben has been experiencing will prove to be transient and not indicative of a recurring problem.
(Linking to the DP Challenge today. We need all the views and all the prayers we can get.)
#BenStrong #Soli Deo Gloria