Overdue Update

[Jarrod Ostachuk]

It's been over two years since I last posted, so I think it's imperative that I start from the beginning.

While on vacation visiting family in Indiana, I began having horrible head aces and back pain. My parents took me to Reilly Children's Hospital where I was diagnosed with spinal meningitis,(after numerous scans and spinal taps) then released me. A couple days later, I passed out in a local restaurant and was transported back to Reilly. Finlay, they diagnosed me with an spinal AVM, surrounded by blood clots and aneurysms. Now at the time (late 80's) there were only a handful of doctors in the world, who even had the slit-est idea on how to operate on a AVM. Luckily for me, Duke Medical in North Carolina had a Physician by the name of Jerry Oaks, who was willing to operate. During the operation he was able remove the blood clots and aneurysms, however leaving the AVM. After a long period of healing, I lived an absolutely wonderful childhood. I was able to perform activities any other child could - including sports.

I'm now 30,(okay 31) and a couple of years back I started noticing my right knee felt numb, which I contributed to an old soccer injury. I let it go until there was no choice but to seek help. My parents took me to Wishard Hospital, (in Indiana) where I had a two hour MRI which showed not only the AVM had grown (T9-T11) but a aneurysm had formed. From there, I was put in touch with the number one Nero Surgeon in the Midwest, by the name of John Scott at Methodist Hospital. He performed two embolisms to no avail. Running out of options, he recommended a specialized radiation treatment - proton beam radiation therapy. As luck would have it, there was a clinic located in Indiana. I meat with a wonderful Doctor,(Allen Thornton) who explained the risks and performed the therapy. It's going to take anywhere from three to five years to yield any results, if any. It's been a little over a year since the radiation and the AVM has not shrunk, but it has not grown. I'm happy with the results thus far.

If anybody would like to talk or hear more about the radiation treatments, feel free to e-mail me. jostachuk@live.com

[graeme50]

My Sister was diagnosed with AVM last month. She had an operation by the only Nuro Surgeon in New Zealand that had any idea about AVM. Before my sister he had never heard of AVM from what I gather. He appears to be taking a bigger interest now because AVM is so new to him and I guess he has a appetite to know more about it.
She was just getting over Guillain–Barré syndrome ( Guillain?Barré syndrome - Wikipedia, the free encyclopedia )
when this happened.

[Jarrod Ostachuk]

How is your sister doing now? Where is her AVM located? There are other procedures available, if she is interested!

-Jarrod