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AVM Survivors Network

Patience is Not My Virture

#1

I guess I just need to vent a little to some people who know what I’m going through. My husband is my rock but he honestly doesn’t “know” what I’m experiencing. I had to taper off Nortriptyline due to the side effects so right now my headaches have been worse (I’m hoping just due from getting off of that). I really don’t want to go back to having migraines like I had shortly after my radiosurgery. I just want the pain to end. I’m tired of being in pain all the time. It hasn’t been a year yet since I had my radiosurgery and I know it can take 2-3 years for it to actually shut down completely, but this has been the longest year of my life. I feel like I’m barely hanging on. I’m trying to be strong but I don’t feel like I am. I want this nightmare to be over. I want to be an AVM Survivor. I have never been a patient person so this is the most difficult thing I have ever been faced with. I want to believe I could be more patient if I knew for example that on June 3, 2019 it would be completely shut down, but I don’t. It could be 2019, 2020,2021 or even longer. I want to move on with my life…start my family. I feel like this AVM has halted everything and I’m stuck waiting on it. OK…I’m sorry I guess I’m done venting for now. Thank you for those that take the time and read it.

#2

Sorry to hear your feeling so bad, I have had it quite tough and am awaiting radiosurgery as we speak. I used to think why me, but I have done volunteer work in the past, for severely disabled people. many were never going to be better. I feel i’m lucky I have the chance of getting better. I know it’s tough for you now, but there is light at the end of the tunnel. Maybe soon you can give me advice when i’m feeling down after surgery. My prayers are with you, you are a survivor and your on the finishing stretch. Keep on at the doctors about your pain and how you feel.
Best of luck…
Mick

1 Like
#3

Don’t apologize for venting to us, we understand, and as I like to say let 'er rip! I understand the waiting , it is damn hard, and I didn’t have the headaches to add to the time. I’m sure it makes it that much slower. I’m a wee bit “Type A” so get the impatient part, and not being able to control it adds to the impatience factor, or it did for me at least. I got gamma November 2016 and found out in February 2019 that may AVM was dearly departed. Hang in there, we’re with you and are here whenever you may need us. Take Care, John.

#4

Thanks guys. I really am thankful that I do have a light even though I may not know how long my tunnel may be. A year ago me and my husband went to Italy for 10 days so it’s really been making me think about how much has changed. And yes frustrated me as well that now I am terrified to go to work some days. I just have to take a deep breath, have a good cry now and then and keep moving forward I guess.

#5

Not to worry. You’re one of us now. At some point we have all been depressed, impatient, moody, misunderstood, in pain and just plain pissed-off at our circumstances. Yes, your life will be forever changed, but eventually you will see the light at the end of the tunnel. My first Gamma Knife was in 2015 and my second was 5 months ago. The monster in my brain is still there, although 50% smaller than it was in 2015. Four-1/2 years since the onset, I thank God that I’m still here. I vent at times and I pray all the time. You’re on a long recovery journey, but that journey get’s easier as time goes by. You can vent to us any time because "We get it. They don’t! Wishing you all the best.

Sharon D…

#6

Hear! Hear!