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AVM Survivors Network

Left Parietal Lobe Resection Success

When my then 15 year old daughter was diagnosed with an AVM this summer, I learned alot from this website, but it was also very scary to read what could lie ahead for her. At first we were told surgery was not an option for her because it was located near the motor strip and speech area, and about 4 cm. Many on this site advised to talk to more than one surgeon, and go with one you have confidence in. For us, that was Dr. Bendok at Northwestern in Chicago.

After the angio and functional MRI, surgery was an option after all, and is what we decided to go with, even though they warned us she would most likely have some deficits, especially in her right arm - but with her youth and otherwise being healthy, she should be able to recover with therapy. Radiation also had risks for her, so we felt surgery was the best option for her.

She had an embolozation on November 16, 2011 and the AVM was successfully removed the next day. She did have problems with her right side and speech after surgery, but is doing great now. She is doing some outpatient OT and speech therapy, but most people can't tell much difference from before surgery. She is working with a tutor and hopes to back in school for second semester.

My profile picture is her, taken a couple of weeks ago, just one month after surgery. unless you look at the top of her head, or in front of her ear you can't even tell. Dr. Bendok and the staff at Northwestern were not only very experienced with treating complicated AVMs, but their compasion for my daughter was outstanding.

My advice would be the same as many others on here - talk to more than one surgeon, be sure they have alot of experience with AVMs, and then go with who your heart tells you is right.

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Super Hurrah!!!!!

That is great news! Thank you for sharing her story.
Angela

Great to hear about these stories. Keeps my chin up.

What a wonderful time of year to hear about yet another blessing - so happy that surgery was an option and went so well - YAYYYYYYY!!!!

Oh JB...I love to read success stories on the Network...Mom, you did exactly the right thing...you found the best! Give your daughter our love and Keep the Faith!

She can now say, I'm AVM Free!

Great news!
:)

Yay! Congrats & I'm going to have to get in touch with this Doctor! He's only a few hours from where I live...I was told too that mine was inoperable & hoping in 2012 to get another opinion :)

How is your daughter today?

Thank you for asking, she is doing very well. She graduated from the occupational therapy assistant program last May and studied really hard and passed her national certification exam the first time. Unfortunately there are very few full time COTA jobs in our area. But, she worked at her college bookstore while going to school, and was able to get a great full time job there. She is now looking into getting her bachelors through an online program.
She is doing well medically also. Seizures are very well controlled but is still on Kepra and lamictal. I’m hoping they can do another eeg soon and maybe reduce some of the meds. One problem she has started about two years ago, she has alopecia, her hair is thinning and she has a couple bald spots. No one can find anything that links it to her surgery, but the spots are along her incision line, so it seems like it’s somehow related. A lot of people think it’s due to stress,so hopefully now that she graduated and has a good job, maybe it will get better.
I’m sorry you are having problems getting some answers, it has to be so frustrating. I totally get what you mean about just throwing on meds, I hope you get some good answers soon.

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That is wonderful!! I’m so glad she is doing so well! It gives me more hope for sure! The neurologist they called from the ER said that he wanted to see me in clinic right away and to call the next day. He stated that he would repeat the eeg in a more controlled environment so we can hopefully get a better reading. When I called the next day his receptionist would not even pass a msg to him and fought me for several days to even get a referral from my gp because apparently the ER doc referral was not enough. She then calls me and said that neurologist has no openings for months, but another neurologist there has an opening. So I gambled and went with the other one, hoping to get answers. He just said yep, take the keppra and see me in 3 months and if you are seizure free still I will release you back to driving. I felt like he wasn’t even listening to my concerns at all. I hope the neurologist in portland will listen to me. It’s over 3 hours from my home and they said their clinic is not accepting new patients so they only agreed to see me once. Hoping they will change their mind when I get there since my neurosurgeon is up there. I’m not even sure they were seizures so I wish someone would listen. I don’t really know what happened with the first one, I was exercising and just kind of blanked out. They happened more at the hospital but I remember hearing people but it’s like I couldn’t understand what they were saying or respond for a brief period. They are calling them absence seizures.
With where my avm was I know it was near my motor board where speech recognition is comtrolled. I just can’t seem to clear my mind of the possibility of it being related to that. I’m finding it very hard to eat on the keppra and it’s definitely affecting my body. Tell your daughter she gives me hope and to keep on pushing on!! Thank you for updating on your daughter and listening to me <3