Jack Dow

Our son Jack was diagnosed with a brain AVM in July 2022. A large left-sided Cerebral AVM.

An AVM is an arteriovenous malformation (AVM). It is an abnormal tangle of blood vessels connecting arteries and veins, which disrupts normal blood flow and oxygen circulation. Arteries are responsible for taking oxygen-rich blood from the heart to the brain. Veins carry the oxygen-depleted blood back to the lungs and heart. Some people with a brain AVM experience signs and symptoms, such as headaches or seizures. An AVM is often found after a brain scan for another health issue or after the blood vessels rupture and bleed (haemorrhage). This is the Google version of a Brain AVM.

Jack has been an active lad his whole life. He has competed in trampolining, gymnastics and diving from a young age. He has always been a part of clubs, army cadets, gymnastic, trampoline, football and currently he enjoys training with a local muay thai club. He has always been healthy and super fit. Jack's dream is to join the Royal Marines. With this diagnosis, everything is on hold and what he had planned for his future has been turned upside down. He is 18 and feels like he is living in limbo and having to plan a different path in life. He feels he is living with a ticking time bomb inside his head.

In the last couple of years, he started getting the odd migraine. In the summer of 2022, these became unbearable. Migraines with aura were coming 3/4 times per day. He was bedridden and with each migraine, the pain became worse and more intense. Jack has a high pain threshold so we know the pain he was suffering was severe. After numerous GP appointments trying different migraine preventers we took him to the out-of-hours Doctors who thought it was nothing to be worried about but will send him up to the Hospital to be safe. It was here he had a CT scan which showed the AVM. A huge shock, this is a lad who has bounced and somersaulted on a trampoline, participated in gymnastics and diving, and then to be told he has this mass in his head was shocking. They say it has probably been there since birth.

Jack's AVM is 5-6cm in size and is a Grade 4 (1 the smallest and 6 the largest) on the Spetzler Martin Grading Scale and is situated in his cerebral occipital lobe. The occipital lobe is the visual processing area of the brain, and Jack's symptoms are that he suffers severe migraines and vision loss caused by the AVM.

For an 18-year-old whose goal was to join the Royal Marines, it's devastating for him.

We have been in touch with three UK based Neurosurgeons who all say it is a very high risk to carry out Surgery (Craniotomy Resection). Two of them said that they would not carry out Surgery due to how deep it is in his brain. One has said he could operate but the risks are very high. Jack would lose 50% of his vision in both eyes and is at a high risk of having a Stroke. They have also said that Gamma Knife Radiation won’t help, due to the size of AVM. “It’s like poking the bear” was the Neurosurgeons words.

I have carried out my own research and have had numerous Zoom consultations with American Neurosurgeons. We have now found a Specialist Vascular Neurosurgeon in Miami, Florida, United States of America who deals day in and day out with surgery on brain AVM’s. He has performed 880 re-section surgeries. He is confident he can remove Jack's AVM with minimal vision loss. In total Jack will be across in Miami for a month. Jack will undergo, a Diagnostic Cerebral Angiogram and Vascular Embolisation(to block the flow of blood to the AVM) then the next day they will carry out the Re-Section Surgery(remove the AVM). Jack's surgery will take 12 hours all going well and he will be under sedation for the remainder of that week, to allow Brain swelling, bruising etc to heal.

The remaining 2 weeks will be recovery and rehabilitation in Miami.

The cost for Surgery

in America is £147,000.

I know this is a lot to raise but we must try.

He is our Son