The rest of the story (up to today anyway)

So after my 8-hour surgery and emergency 2-hour surgery to remove the clot that had developed, I was sent to the post-op room and placed under observation for a few more hours. In the meantime, my family and friends that had expected to hear from the surgeon sometime in the late afternoon were freaking out because it was now almost 10:00pm and they had not heard a thing.

The next few days are pretty much a blur. I’m told that I had conversations that I don’t remember having. Doctors and nurses did things to me that I don’t rmember them doing. I remember the occasional blood test, but that’s about it. The first thing that I really remember with any type of detail was having my neurosurgeon’s fellow surgeon sitting on the foot of the hospital bed (ironcally, he’s the guy that I had met with to discuss the potential of Gamma Knife treatments). He was asking me questions, and the first one that I caught was “Repeat after me… ‘No ifs, ands, or buts.’” It took me a second and I had no idea why he was asking me to do this, but I did and he had a shocked look on his face as if I had done something miraculous. He asked me a few more random questions and then said he was going to send in a nurse to help me get up and start walking a bit. Walking was tough as the entire right half of the vision is each eye was gone, and what I did have on the left side left me seeing double. The nurse (who spoke in quite broken English) had me trying to read signs on the walls, but I was so confused and my vision was so messed up that I stood no chance. Nevertheless, the doctor sent me home the same day. I only remember bits and pieces of the following week.

The recovery time of an estimated 1-2 months turned into 6 months, and later into 9 months. I could barely read, my short-term memory was completely shot, I was replacing words with other random words and didn’t even realize what I was doing, I could barely remember names, I referred to my new bride (whom I had already been with for about 6 years) by my ex-girlfriend’s name, couldn’t figure out how to use a TV remote control, every food that I ate tasted completely different to me, the entire right side of my body had become weaker than the left side, my balance was almost non-existant, and I was beyond frustrated that no one understood what I was going through and I couldn’t explain it to them. One of my biggest fears was that I would have lost some of my abilities that have long been a very important part of my life. I have for a long time been into music. I sang in choirs all the way from high school and through college. I was in a band with some friends up in Monterey. I had finished recording my own solo CD just a matter of months before my surgery and here I was, having all of these issues to deal with and I was afraid that I would not be able to sogn or play the guitar. The first time I did try singing, I had lost any sense of pitch that I previously had, with the exception that I was able to tell that I was way off. So I sat, staring at my guitar for a couple of weeks, afraid to try to play because I didn’t know what it would sound like when I tried to play.

Well, two months of various types of therapy (physical, mental, emotional, occupational, etc.) I was back to a point that sort of resemled the old “Me” but I still had a lot of catching-up to do. I continued going in for monthly appointments with multiple doctors and for follow-up MRIs. After 9 months, I was back to work and to a point where anyone that did not already know me would have no idea that I had been in such bad shape just 9 months earlier. Those that do know me were still impressed by the recovery I had made, but the part that was really rough is that I still knew what I had going on inside my mind. Now here I am, back to the regular routines of daily life. I now have a son that is going to be turning 2 on February 5th. Oh… And the flavors that I am used to for food are back to normal, my tone-deafness was just temporary, and I can still play the guitar just fine.

Jake, I’m so glad that you’ve got your music back. I can see that it was and is an important part of who you are. Congratulations on becoming a daddy! What is your son’s name?

Well for what it is worth, I’m glad you got your sense of TASTE back!!! I can’t imagine not still loving my food and having it taste the same. Don’t take away my enchiladas!!!
And yes, really I am with Connie on the music part. I’m not the least bit musical but can tell it was a very big part of your identity and your passion. Having that return must be one of the things you are most thankful for!

Hello Jake and family. You are fantastic ! That wife of yours must be quite a woman as well as a wonderful human being. On my way out to my twin grand-daughters 2nd Birthday and noticed your boys birthday on the 5th. HAPPY BIRTHDAY to the little one, and happy day to his parents !!!

wow your recovery sounds so much like mine…its been 2 years. and of course still can’t really speak and when I do its a bunch of wrong words. lol but I try to find humor in it now. I’m so glad your back to being you and that things are going so well for you. It is good to know that I still have a chance in being me again especially with us having the same symptoms after surgery. :slight_smile:

Hello Jake. I hope the days are as good as they can be and continue to be even better. Hugs to you and the family. All is well ? You are quite an excellent example of strength, bravery, determination and hope. You are aware of that, yes? I thought that perhaps you might share a bit of yourself with a new member ?
Sheila White has a twenty-two year old son and they are in need of knowledge of the possibilities…So I thought you might look them up ?
Be good to you. Take care of you. Hugs all round. Maybe a few extras for the birthday boy and his mom…You are all in my prayers.

I cant beleve how close we are to each other…25 minutes away. Dr. Kim is the one who pulled my drain tube…and he would often vist me on rounds. Where did you do your therapy? Im still recieving pt once a week at Hoag. Kristen DeMars is my therapist and she is excellent. I have come a long way and my symptoms after surgery were very similar to yours. I had to learn how to do everything all over again…I didnt even know my own name, let alone my husbands. Im glad you are feeling well now. Its been just a little over a year now for me and Im still feeling like I have a long way to go, even though I’ve been back to work full time since August. How long did it take you to fully recover?

Interesting story, I’m sleepy and I couldn’t stop reading it :slight_smile:

Amazing story! I too have lost peripheral vision. Lucky enough I do not notice it until they go waving fingers around that I cant see. There are so many strong men and women on this site. Im amazed and find strength through all the stories I read! Hopefully after my 2nd surgery finally scheduled for April 10 I will be free of my AVM and not have any side effects. Only 11 years, 2 surgeries and 2 gamma knife radiations! Ive got a stubborn AVM in me but I will win the battle.

that is just an amazing story,the things you went through and have come out of,you must be just so proud of yourself,your faith in God im sure is strong,look at you now,thank you Jesus!! thanks for sharing such a blessing story,I just love good endings,:slight_smile: hugs…Caroline

that story is so moving … i hope one day i can untangle the mystery of my AVM . I am glad to hear you are back on track and thanks so much for sharing your story

Okay, so I finally read your profile. Wow, you’ve been through a lot, haven’t you? I can relate in many ways. The thing that struck me about you was the music thing. Music has always been important to me. After my injury, I could no longer sing with any kind of pitch. That came from being intubated and extubated a total of 10 times. So, I was bummed about that. I was by no means a professional singer, but I was decent enough that people would comment on it and no it’s gone. Anyway, just thought I’d share that I can relate a little. Glad to see you’re doing well and that you can play the guitar. While I was in the coma, my husband brought my Ipod into my room. I started tapping my foot and that’s when he knew I would be back! You are amazing!! Good for you.

Hey Jake! I am glad to hear that you recovered. It sounds like you went through a lot with your AVM. It is a blessing that you are back to your normal lifestyle. As for what you asked, my AVM is about 3cm and located on the right side in the back of my head. The doctor said it is close to where my speech is controlled.

Your story about music rings so close to me. You know the last thing I did with my left arm was playing piano? I miss that so so much… I also lost my controlled vibrato in singing, along with a octave of range. My pitch has been good, but it takes more control to keep it. Most is realted to spasisity I think, plus those darn breathing tubes. Awsome story my friend, thanks for sharing it:)