AVM-AZING

Tim here! As I have been recovering I've been thinking a lot about what I did prior to surgery to help out with my recovery. I decided to jot down a list of things I did in hopes that it will help someone else out prior to their own surgery. This is by no means an exhaustive list, but it sure helped me get prepared! 1. Clean Your House  The instructions I received from my doctor specifically stated I would not be able to do things like mowing the lawn, do laundry, or bend over to unload dishes from the dishwasher. In other words, you really are not going to be able to do any sort of cleaning during your recovery. Personally, having a dirty house stresses me out so not having that stress during my recovery was nice! Note from Tia: Also, a clean house means less risk of sickness or infection! For us this meant sweeping, vacuuming, dusting, cleaning bathrooms, washing all bedding, and wiping pretty much every surface down with disinfectant. 2. Stock Up on Healthy ...

Wow. Today is Saturday. How did that happen?!? I'm so sorry I haven't had much of a chance to update the blog over the last 48 hours, it has been pretty eventful. But in a good way! I'll give you a short break down of what things have been like and then I'm sure Tim and/or I will add more later. First things first, THE SURGERY WAS A HUGE SUCCESS !!! Wednesday (after surgery) 6 PM - One of the surgeons came to the waiting room to let us know that surgery was done, everything had gone great, and they believed that they had removed all of the AVM. They were taking care of all of the post-surgery work and planning to bring him out of anesthesia. 7 PM - Tim was awake! I couldn't see him yet, but they assured me that he was doing very well and there hadn't been any complications. They were going to take him for a CT scan and would let me know when he was back in the ICU. 8 PM (I think? Maybe it was closer to 7:30, but it's all kind of a blur.)...

Well everyone, it's surgery day. I stayed with Tim in the NSICU last night on a surprisingly comfy cot that the nurses pulled out for me. I just have to say, all of the staff at OHSU has been so incredibly kind, helpful, and supportive. If you are ever considering a location to go for medical care, look into OHSU. Also it's a teaching hospital so it kind of feels like I'm living out an episode of Grey's Anatomy. Even though Tim drank lots of water the past few days, he still woke up thirsty and cranky that he couldn't eat or drink anything before surgery. He was scheduled for 10AM, but he was the second surgery of the day so we found ourselves waiting well past then. The OR nurses, anesthesiologists, and even his neurosurgeon stopped by to chat and make sure he was doing well. By the time they told us they were ready and got him prepped to move it was 12:30PM! As I'm writing this, it's about 4PM and there's a whole gang of family and friends ...

Whelp, we've reached the  week. Brain surgery week. Tim and I have been at the hospital for almost two hours now and his embolization is scheduled to start here soon. As a reminder for what is happening today, they will insert a catheter into his femoral artery and feed it up to the brain. Once they get to the main artery that is feeding the AVM, they will inject some dye, make sure everything looks good, and then inject a glue-like substance called Onyx. (Like the Pokemon!) The procedure is supposed to take about two-ish hours and then he'll be in the ICU. I'll be updating this post throughout the day! Update: It's 8PM. Tim and I are currently watching Avengers: Infinity War in his room in the NSICU. (Haha they have a great movie selection!) The embolization went fantastic and Tim is feeling great, all things considered! I think that adding more supplements (potassium, magnesium, and calcium) in over the past month combined with drinking probably a dozen ...

We have now reached 2019! Turns out it takes a long time to get a cerebral angiogram scheduled at a hospital like OHSU. January 25th It's angiogram day. Yes, an angiogram is a fairly low-risk thing as far as invasive procedures go, but it still required a full day at the hospital, careful monitoring, and a bit of recovery. The angiogram took a little less than an hour and then I was called back up to the recovery wing to see him. He was tired and thirsty, but everything had gone just fine. He told me they had even "Let him see his swirl!" which is what we were now calling the AVM. Tim Waiting for the Angiogram We spent a few hours resting and waiting. Tim for obvious reasons and me because I was now running on about 2 hours of sleep. For most angiograms, they go in through the femoral artery, so there's some concern about it causing a hematoma, which is a collection of blood outside of blood vessels. Basically, bleeding into the leg. They wanted to make ...

The week-long wait between the eventful angiogram day and the followup was not fun, but it finally arrived. February 1st We went back to the neurosurgery unit at OHSU and met with the surgeon's attending (I think?) who reviewed the angiogram with us. He confirmed what everyone had been saying. It was an AVM. A tangle of blood vessels. In his brain. Okay. He talked through each of the different treatment approaches, their likelihood of success, the risks, and the recovery that went with each of them. Option 1: Embolization. For this option, they basically repeat what they did for the angiogram (insert a catheter into the femoral artery, which is fed up to the brain) but instead of injecting dye, they inject a glue-like substance. This reduces blood flow to the AVM and can sometimes help to decrease the size. Definitely not a complete solution.  Option 2: SRS. This option uses stereotactic radiosurgery, which basically means they take a focused beam of radiatio...

Hey everyone, Tia here. I wanted to get this blog created so that Tim and I can start writing some background posts before the 13th. What's happening that day? I'll get to that! November(ish) of 2018 Everything started last year when Tim was constantly suffering from mild headaches. They didn't prevent him from going about his days, he would just describe it as a mild annoyance. A "one or two" on the pain scale. December  We finally decided it was time for him to visit Zoom care and see if they could give him some ideas about what might be going on. He left with a referral for a radiologist and scheduled his first appointment for an MRI. Two MRIs later (two because the radiologist didn't get pictures of the correct area and had to have him come back, ugh) we had pictures of his brain with a scary-looking spot near the front. Top View of Tim's Brain The following day, the doctor sent him this: Dear Tim, I have read the findings of y...