My dad was scheduled for surgery and the hopeful removal of his AVM (located at the base of his brain and spinal column) on 9/13/2012. Dad and my stepmom ( they have been married since I was 2, so she's basically a second mom) flew out the Monday of that week, and my brother and I flew to Phoenix on Wednesday, the 12th. When we arrived in Phoenix, my brother and I took a cab to the hotel where my parents were staying, and we had rooms there, as well. It is only about 2 miles from the Barrow clinic and Dr. Spetzler. Surgery was scheduled to begin at 6am Thursday morning. We hung with dad the night before, then we all tried to get some rest.
I remember waking up the following morning, and sort of being in a daze. A plethora of emotions were running through me, mainly fear and anxiety, but I do distinctly remember, as we were all four in the cab on the way to the hospital, seeing an awesome cloud formation in the sky. (We learned a little later that it was a con-trail from the missile Juno, that the base in Phoenix tests one day per year, it was all over their local news... I took it as a good omen).
Once we arrived at the hospital and dad was getting prepped for the first part of the surgery, I remember becoming overwhelmed with sadness and fear. I could not stop the tears from coming, but I did not want anyone, especially my dad, to see. I wanted to be strong. As the nurses handed us the plastic bag of dad's clothes, after he had changed into the hospital gown, I remember I dug through and found the baseball cap he had worn to the hospital... I immediately put it on and wore it all day. The first part of the surgery consisted of the radiologist performing an angiogram, to try to cut away, clean up and cauterize as many rogue veins and vessels and possible, before Dr. Spetzler operated on him. They had no idea how long this part would take, as it's a "we'll know more once we're in there" type situation. However, we were told that we would be able to see dad after the angiogram and before he went to Dr. Spetzler's OR. The time came when they were ready to take dad back, we all hugged him... I pulled the hat down low, to cover my eyes, gave him a big hug...and he was on his way.
We were sent to a nice waiting area, which we basically had to ourselves. Not knowing what to do with myself at that point, I ran to the hotel and back, to try to relieve some of my anxiety... and I am not a good runner. About 10 minutes after I returned, the radiologists entered the waiting room. He said there was nothing he could do... it would all be up to Dr. Spetzler. Well, it wasn't the best news, but it wasn't the worst, either. We were just happy dad was through that portion of the procedure and we would be able to see him again, soon.
We made our way back to where they were holding dad and we were able to visit with him for almost 2 hours. One of the doctors who would be operating with Dr. Spetzler came in and told us he would be the one removing the four vertebras that had to be removed in order for Dr. Spetzler to access the AVM. We also learned he may not be able to put them back in... it would depend on their condition. So, along with all of the risks that come with any surgery, much less an AVM surgery (i.e.- death, paralysis, loss of motor function, loss of speech, etc.), now we were worried he would lose 4 vertebrae. Ha, I remember personally begging the doctor to please do whatever he could to put them back in... as if that wasn't his main objective.
As time ticked on, it was around 11am when they came to take him down to the OR. I still get that sinking feeling in my chest when I think about that moment. Again, I pulled dad's hat bill down low over my eyes, leaned down to give him a hug, and told him exactly what he has told me throughout my life, when I've ever faced a challenge: "Do good... I know you will do great!"... Normally, I would always correct him and say... "It's do WELL" and we'd laugh. But this time, "good" was perfectly okay.
After he was rolled through the large double doors and into the prep area, we just stood there for a moment, until a nurse showed us to a new waiting room. This one was nice, but much more crowded. We were given a beeper (like the kind you get a restaurant when waiting on a table) that would buzz any time there was an update. I don't think I'll ever look at the restaurant beepers the same... this buzzer/beeper was the only connection we had with dad. Needless to say, it was an uneasy feeling each time it buzzed.
I remember the three of us opted to sit outside of the waiting room, on some benches in a large hallway, as I think we were all getting a little claustraphobic. As time ticked on, finally after about an hour, we got our first "buzz." The info was "everything is good; we are getting started on removing the vertebrae now." This was around 12:45pm, so the three of us went to the cafeteria to try to eat something, or just to busy ourselves until the next update. Once we were back at our post, sitting on the benches outside of the waiting room, we noticed a nurse who kept walking in and out of the waiting room, and she was updating the patients. Well, we immediately got her attention when she walked by and asked if she could check on our dad. She ended up being our saving grace... a true Angel, this nurse was. She regularly updated us on dad's condition almost every 45 minutes to an hour...although the information was always broad, it was better than having to wait on the dreadful buzzer.
I remember as we were waiting, my phone would not stop ringing, beeping, buzzing, etc. I had so many friends and family who wanted updates; but I just could not bring myself to talk to anyone. I did talk to my mom, but I think she was the only person I talked with until it was all over. Finally, around 5pm, we got word from the "roaming Angel nurse" that they were "wrapping up." That's all she knew. We were so excited, yet scared to death at the same time.
About an hour later, the nurse came by and said "follow me." We hurriedly jumped up and followed her to a small room with another door on the opposite side of the room from where we had entered. This was it, my heart was in my throat, my chest was heavy and my knees were shaking... then walked in Dr. Spetzler.
This would be the first and only time I'd meet the good doctor. He is an average looking man, tall,nice, but not overally outgoing and talkative... and he's 68. Now I knew why my dad was so anxious to get into his program. As he entered, I nervously reached out my hand and introduced myself, and my brother did the same. Then there was a few seconds (felt like hours) of silence when he said "I believe the surgery was a success... your dad is doing well right now." I literally leapt onto Dr. Spetzler, wrapped my arms around him and said "thank you" probably about 4 dozen times, until he stopped me and said "wait a minute... I'm optimistic about the outcome, but I cannot be 100% sure until we perform another angiogram on your dad... and that will depend on his recovery process." GULP... my heart hit the floor. It was all basically good news, but we still had to wait and see how dad was when he woke up; if he could move, talk, remember, etc.
After this short meeting, we were told to return back to the waiting room until dad could be moved into ICU. We were feeling better, yet we were all three extremely anxious. It's one of those times in life where you actually have to "see to believe"... and we had not seen him in almost 7 hours. As luck would have it, we saw the roaming, Angel nurse again, and begged her to take us to his ICU room, so we could be in there when he arrived. After a few moments of consideration, she obliged. We were all so excited to be in the ICU room, but the excitement faded as time ticked on and still no sign of dad. One hour... 2 hours....
Finally, around 8 or 9pm, they rolled dad into the ICU room. He was awake! Apparently he had been in so much pain, they had to get that under control before they could send him to his room in ICU. After the nursed and doctors transferred him to his new bed and got him all hooked up to the machines, I clearly remember my stepmom asking him a specefic question: "What does LMN mean?" (now, to most women, LMN is "Lifetime Movie Network," but to my dad and probably most men... he loathes that channel... so he calls it "Lame Movie Network," and low and behold, that is what he answered with. We all laughed and were a little relieved that he actually remembered us, along with everything else. Things got even better when we learned he could move all of his limbs, as well. The main issue he had, besides the pain from the incision, was that he could not move his left arm. The AVM had begun deteriorating the left side of his body, so it has always been weaker, but he could not move it at all. He could move his fingers, just not his arm. The doctors said this was a normal occurrence, and after reading all about different AVM surgeries, I was very happy that this was the only major issue, thus far.
We visited with dad for about an hour, but we were all exhausted and he told us we should go to the hotel and get some sleep, as he was tired too. After being reassured by the nursing staff that he'd be okay and they would call if there was any change, we reluctantly left. We arrived back at the hospital around 6am the following morning, Friday. Dad was doing better, but still not able to move that left arm. My brother and I had been booked on a flight home for that Friday afternoon, and after debating back and forth whether we should leave or stay, dad basically ordered us to get on the plane to Memphis and to get back to work (we work in the family business our dad started back in 81). Adding to this, my dad is the stubborn type, he didn't want us there worrying over him, when he knew there was nothing we could do for him.
After spending a few more hours with dad, it came time for my brother and me to leave for the airport. Again, we said our goodbyes, but this time with a little less heavy of a heart, we hesitantly left for the airport. As we were waiting at the gate to board our plane, we received a text from our stepmom... it was a video of our dad.. and he was walking! (with a walker, but still.. he was walking!). A rush of relief washed over me, but I was still very anxious to be leaving.
Once we arrived back in Memphis, we learned that dad was doing very well and he would be discharged from the hospital the following day! He and my stepmom would end up staying in Phoenix for the following two weeks, because dad had to report back to the hospital almost daily for check-ups, and he still needed to have the second angiogram to determine if the entire AVM was obliterated.
A few days had passed since I'd gotten back home and I got a call from dad and he had some really great news: Dr. Spetzler had amazingly been able to remove all of the AVM, except for one, tiny rogue vein. However, the prognosis was still very good. Since he was able to remove the main artery that was feeding the AVM, he was and still is hopeful that either it will eventually die off on its own, or the gamma knife procedure is an option. For dad's AVM prior to the surgery, the gamma knife was not an option for his condition, because it was actively bleeding and had been for several months. Dr. Spetzler told him before the surgery that it would be very selfish of dad to not have this surgery, as he was basically a ticking time bomb, and the AVM could and would rupture at any time in the very near future.
Once my parents arrived back in Memphis a few weeks post surgery, dad began physical therapy at a local rehab clinic. Each day his arm mobility increased. He went from not being able to pick up my brother's son (15 months old) to picking him up, playing golf, and lifting weights.. all within 3 months. WOW!
Dad still has to see his local neurologist every 6 months for new scans, and he will be under the care of Dr. Spetzler from now on. The local neuro will forward all of dad's info to The Barrow Clinic. We're still not sure what the path will be concerning the vein that was left behind, but we are hopeful that it will work itself out on its own.
Who knows, perhaps one day, they will have a better way of obliterating these AVM's, which will be a much less invasive technique than today's methods. However, the medical field has made leaps and bounds over the past 30 years in the AVM/neurology field. When dad was first diagnosed at the age of 26, he was given a 35% survival rate, if they were to operate. At that time, it was the "wait and see and don't make any drastic movements" method. When he met with Dr. Spetzler pre-op the Monday before surgery, Dr. Spetzler gave him a 90% survival and success rate. That's a miracle in itself.
Sometimes it's still odd when I'm around my dad... I catch myself worrying when I see him lift something heavy, or when he's out playing golf, etc; like I did before the surgery. Yet, I know his quality of life has been increased drastically by this "genius" Doctor, Dr. Spetzler, and I am so thankful for his abilities. I only hope that in the near future, more information will be studied and learned regarding AVM's... and perhaps one day; maybe, there will be a way to detect them sooner, treat them easier, or prevent them from happening all together.
I want to thank this community for its support. I know I do not talk/write very often on here, but I read the stories very often, and I am thankful for this outlet.
I know my story reads from my point of view and I know we are lucky; very lucky to have our dad here today, and for him to have had a successful surgery. I know there are others out there who are not so lucky, and you all are in my thoughts and prayers. I only hope that my story will help someone else who is going through a similar situation. The waiting is the hardest part. Dad was in surgery for over 6 hours... In hindsight, that's not very long, but when all you can do is wait... it becomes unbearable at times.
My dad was diagnosed with this 2 years before I was born. It's something I've known about all my life and I've watched as dad's body has slowly deteriorated throughout my 30 years of life. Had Dr. Spetzler not accepted him or not been able to operate, who knows what could have happened. At the very least, we knew dad would have been in a wheel chair within the next few years, from loss of muscle mass in his left leg.
I'm so thankful that it did not have to come to that point. Thank you all for your support and stories, it truly is a blessing to be a part of this group.