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AVM Survivors Network

I am still here

Hello, my name is Kara and I am survivor of a grade four Spetzler-Martin scale AVM ( with a formed aneurysm) in my left temporal lobe of my brain. My AVM presented as grand mal seizures in 2015. In 2016, the AVM grew and started to bleed. In January 31, 2017 I had an Onyx embolization, followed up with a craniotomy 48 hours after. During the craniotomy, I hemorrhaged immediately needing a blood transfusion. Accordingly to my neurosurgeon, he was worried that I would wake-up without the use of the my right side. Apparently, God had different plans. I woke up with severe aphasia but I was not paralyzed. I was so very grateful to be alive. Since the surgeries, my life has changed dramatically. I went through a time period where I was consumed with depression and mourning of my “old life”. Slowly, I started to heal. I have been lifted out of that place now. I am active in two non-profit organizations helping others and am able to take care of my eight year old son (whom is on the autism spectrum). I do struggle with the aphasia daily. Also, I was diagnosed with axonal sensory motor neuropathy last January and the pain is awful at times. I refuse to give up, though. I challenge myself all the time. In August, I was chosen as a public speaker for an advocacy group. Talk about God’s plan, not mine…lol. I joined this group because I do feel isolated sometimes. It is nice to correspond with others that have been through this… Thank you for reading my story and I hope you have a beautiful day!!

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Hello @Kara1 So glad you did not have paralysis after your surgery but so sorry about your neuropathy. I am not sure if you have tried Ketamine IV Infusions for pain or just Ketamine oral - I too have been left with pain but due to my strokes and have Centralized pain syndrome. My pain drs at Stanford are treating me with both. its been helping. I do know they told me if I were to move away that University of Wisconsin would be a good choice for me to go to. I also know that there is place in Illinois that supposely does affordable infusions http://www.nationalpain.com/dr-jay-joshi I am allergic to most opiates so Ketamine has been a great help. Its an old drug been FDA approved since 1970.
Thanks for sharing your story
Angela

Kara,

Welcome! It’s great to have you join our band and share your story!

I have to say it is a very common thing to be mourning the “old me” and a process that can take a long time. It is great that you’ve worked your way through that and are finding ways to say “hey, I’m still here” and look after your son. That you’re busy with two non-profit organisations is just amazing! I think it is very therapeutic to have these outlets to show ourselves what we can do.

Very best wishes to you!

Richard

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Thank you for sharing your story and your words of inspiration.

I am reluctant to give advice, but I will say that I’ve found, both with my AVM-related issues, as well as other changes in life (divorce, e.g.) that letting go of ideas about how things “should be” or should have been is very difficult for me. I read a lot of buddhist literature and the idea of ‘clinging’ or resisting change is very true for me personally.

In any case, I’m glad you shared and wish you strength. The service work you described, both in your home and outside of it is so impressive…and a good reminder of the importance of that.

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Dear Kara, thanks for sharing your history and for finding the strength to go on and work after your stroke. My son also had a ruptured AVM 2 years ago and seven surgeries, some due to hospital neglect on infection prevention. He was paralyzed in his left side and had aphasia but thanks to therapy and his hard working and perseverance he can now have a normal life. He is still working on aphasia, so keep working, talking to people and exercising. God bless you

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