After meeting with Dr. Lawton last week, I literally skipped to union square from his office in pure joy. This typically isn’t the kind of reaction someone has when they get told they should get brain surgery, right? There was something about Dr. Lawton that made me immediately trust in his words and his plan. No other neurosurgeon wanted to perform surgery on me because my AVM is located in the thalamus , the mid brain is just too deep . That’s why God made Dr. Lawton, right? I’ve been excited and honored that Dr. Lawton likes my AVM enough to want to operate on it but now that everything’s moving quick, I found myself waking up in the middle of the night and crying to my boyfriend telling him that I’m really scared. Is this to be expected ? I mean I know I’m a girl and we can be unpredictable but I literally went from happy to sad like 0 to 100 real quick .
It's natural to be glad to have found a doctor you like and trust, and it's just as natural to be nervous about surgery. It's still not a comfortable place to be. I'm sure every one of us in the community who has faced surgery has been scared. It would be a rare person who was not at all nervous when facing brain surgery. Swinging from one extreme to the other is also pretty common, no to mention disconcerting. You're definitely not alone in how you feel and how fast your mood swung from one extreme to the other.
Thanks shirasaya. It’s been an emotional roller coaster since I’ve been diagnosed with an avm. Still recovering from a stroke makes it even more tough. Sometimes I get so tired. I’m always wondering when will it all just get better? I know I just gotta hang in there and remain tough though.
Ironically I've been asking myself the very same question, it's difficult to even explain as I have been processing and working through it all right now as we speak, but since my diagnosis over five years ago, it has been an emotional roller coaster. In the beginning doctors were optimistic, based on MRI that is, that my AVM was treatable, but that soon changed, and with every optimistic move in the right direction came a low blow or some sort of major adjustment the sent me into a mild state of depression (more like a waterfall of tears). If it wasn't my new visual deficits I had to adjust to then it was the loss of hair due to too much testing or it was visual field test after visual field test or debilitating episodes filled with migraines and all the other fun stuff...This year, however, things changed when my symptoms worsened and I saw a new doctor out of state. I received a call Friday letting me know my first of 8 embolization's will take place June 3rd with testing on the 18th of this much. Now, I've been praying for a cure all of this time, was on cloud 9 after talking to my neurosurgeon a couple months back and I cannot sleep because I am now overwhelmed with fear. Concerned with what the world or my son will look like when its all over. Wondering if my body will be able to handle the 8 embolizations I have in store....the fear of the unknown can be so crippling sometimes. So, I've written this long winded message to say, YOU ARE NOT ALONE. As a survivor we are faced with so many changes that fear is all too familiar, I want to believe and encourage you to believe that it is normal. Talking, writing and discussing it, I find helps to ease those very real emotions. So, I encourage you to keep talking, because I came here tonight to do the same thing :-)....to breathe, discuss and process. I know that it won't take my fears away but it will allow me to deal with them in a healthy way.
Mica, I’m glad I’m not alone. It’s tough stuff and it seems like no one else can relate unless they’ve had an AVM too. I was reading your profile and was wondering , did you have a stroke too? I can’t imagine having to go through so many embolizations ! It definitely sounds stressful . I’m glad to see you’re able to find laughter during the toughest times of your life. Keep pushing and know that this too shall pass it may seem impossible now but I’d like to believe there’s still hope for us
Oh Monica Congrats on Dr Lawton and no matter if you are female or male its scary.
Its a lot to deal with - lots of mixed emotions
I know I was glad they found something but then I wanted it right out so I could have a Xmas Party...can you say COO COO! They looked at me like I was from another planet....
Then it was wait I have to be awake? Then it was hey is that a huge Spider in my brain...then the bp raised and then the main line IV and I said ok either you knock me or I am about to hit one of you...so they did....
Now its back because they did not get the entire thing....and they say well its not showing up on the MRA but I know my body and even though I hate the angiogram I feel prepared to go in as long as the fire alarm does not go off like last week( thankfully my surgery got moved)
Its a great big deal! If you want to meet in SF before my Surgery which is May 20th let me know
You can only do one day at a time and you have hope with Dr Lawton and one of the experts in the world!
I’m so happy you’ve given me the chance to yell at you. Don’t think this yo yo emotion with the brain surgery is just a female thing. I had similar conflicting reactions of joy and terror. It’s one of the blessings of such an important moment in life. The good news is that you’ve found a doctor.
When I had surgery, it was very hard for me to handle. I was lucky and had someone to hang onto. I just had to keep working with my family and friends to get through the next steps. I did better when I concentrated on one or two steps at a time. Hang in there
Hey Angela ! Wow, the fire alarm went off?? Angiograms aren’t always the funniest. I just had one this morning but I can honestly say I’ve been the most calm and confortable at Ucsf . I love the neurologists there so you’ll definitely have fun when those guys make you laugh . I’ll be in the city again soon so I’ll definitely love to meet up with you I usually stay in the outer Richmond when I’m in town . Is that close to you?
Lol thank you for reminding me that we’re all just human and that it’s completely normal for us humans to be emotional. Support from friends and family definitely do help. Did you wake up right away from surgery ?
Waterfall of tears that is me. Can’t stop the flow. This cerebellum AVM has changed my life. Had first radiation treatment May 7 2015 and with the steroids, blood pressure medicine and Gabapentin can’t sleep.
Completely understandable to have mixed emotions. It's not like everyone has brain surgery in their lifetime. I've heard wonderful things about Dr. Lawton. I know he is one of the best in the country. He, in fact, saved my aunt's life after her AVM rupture. I've only spoken to him on the phone but I knew I liked him. Best wishes!
aww hugs the medication definitely doesn’t make things any easier for us . It’s been nothing but an emotional roller coaster. wishing you the best and hoping the radiation works !
Hi ninibeth ! Yes, I gotta start looking at the positives and be strong ! Thanks for the encouragement
Lol you’re right, it’s like avm survivors are a rare breed! Good to know Dr. Lawton does lifesaving work thanks trish !
I just sent you a friend request-so we can make some plans to meet
Hopefully we can meet early next week. I go back in on Wed for my angio and possible embolism.
Hi Angela ! Sounds good. Your angio will be quick and painless! I love the people over at radiology in Ucsf !