We’ve had a few people ask, so I thought I’d put this out there. There have been no changes or updates and everything is still set for next week (the initial testing on the 7th, the angio on the 10th and the surgery on the 11th).

Thanks to everyone for checking in and I’ll post any news or updates when we have them!

Pam

Ok… just got the call from the doctor’s office. Here’s the rundown:

Monday, December 7th will be pre-surgical lab work, testing and the functional MRI (4 pm for that). Just a day trip for this.

Thursday, December 10th we’ll check into the hospital (early morning, we will probably go to Phoenix the night before) and he’ll get his angiogram.

Friday, December 11th, in the morning, will be the surgery. We’ve been told to plan on a minimum hospital stay (the best case scenario) of 3-4 days. I’m booking a room through Wednesday, December 16th.

All this will be in Phoenix at:

St. Joseph’s Hospital and Medical Center
350 W. Thomas Rd.
Phoenix, AZ 85013

602-406-3000

Hey all… at times in the coming months we may not be able to update everyone quickly and simultaneously, so we thought we’d create this site. In theory, we’ll be posting any news, updates, changes, etc. here so that we can make sure that everyone can get whatever info we have as soon as we’re able to post it (we can update this site from our BlackBerries or any pc). We’ll do our best to keep in touch with everyone personally as often as possible, but please feel free to check this site as often as you can for the latest news (or add the RSS feed to your reader, if you have one, to get automatic updates — the links are at the top of this page and to the right in the sidebar). If you want more info on how to use the site, click on the About link at the top of the page.

Thanks!

Pam, Jonathan and Kyan

we’re having the surgery. We went to the Barrow Neurological Institute up in Phoenix last Wednesday, October 28th, and met with Dr. Robert Spetzler (see links to the right for more info). While the local docs were unsure about the actual diagnosis (possibly a tumor or cavernoma), Dr. Spetzler is pretty confident that the issue is a cyst formed by the radiation necrosis Jonathan suffered after his gamma knife surgery done at Cedars Sinai to “fix” an AVM back in 1999. While they’re rare (and so is the radiation necrosis), they are benign and can even exist without someone being aware that they’re there — IF you’re not suffering from any side effects. Because Jonathan’s MRI shows swelling and he has physical symptoms (headaches, nausea, disorientation, fatigue, increased seizure frequency, etc.), it appears the cyst is one of the annoying ones and will need to be removed, along with the surrounding necrotic tissue. Dr. Spetzler said the surgery is not very complex (think this is because of the location right next to the skull and the fact that he only intends to remove necrotic tissue — none of the potentially functional surrounding tissue).

There’s no guarantee this is “only” a cyst or that Jonathan won’t need further surgery, but the doctor said that removing the necrotic tissue (and cyst) usually resolves symptoms like the ones Jonathan is experiencing and he’d prefer to take this more conservative route to ensure he’s preserving functionality and evaluate how Jonathan feels after the surgery (to confirm that his current symptoms are eliminated or at least greatly reduced). Only if there is no great improvement will there be a discussion about additional surgery and what the choices are at that point. He seemed pretty confident that the initial surgery would be successful (he threw out the comment “better than 95% chance” during our appointment) and will resolve the problems. We’re hoping he’s really as good as everyone says he is.

There’s still no surgery date set, but we’re hoping for a date at the beginning of December. Jonathan will need a functional MRI about 5 days before the surgery (to map out the different functional areas of the brain) and the doctor is also ordering a new angiogram to confirm that the original AVM was truly obliterated.

We’ll post more as soon as we know more.