Mid-West AVMers

This group is for all of us in the Mid-West.

Location: regional-group
Members: 132
Latest Activity: 12 hours ago

Discussion Forum

Where are our Mid-West AVMers located?

Started by Kimi. Last reply by Madere (dancermom) yesterday. 24 Replies

Hi. I am Kimi and my husband is Jeff. Jeff had a large facial avm removed at Mayo a year ago. It has since regrown and is much more aggressive. We are currently looking for a new doc (have sent off…Continue

Anyone from St. Louis or receives care from Barnes?

Started by AWhite222 May 27. 0 Replies

I am very unhappy with my seizure specialist. If anyone has a recommendation I would really appreciate it!

Tags: siteman, barnes, seizure, Missouri

My Story

Started by CavernousQueen99 May 6. 0 Replies

Ever since first grade I have had "headaches". I would be sent to the nurses office and told there was nothing the could do, they pain continued. I was taking unsafe amounts of Tylenol and ibuprofen…Continue

looking for neurosurgeon recommendations in Cleveland, Ohio

Started by Shirasaya. Last reply by Lisa Frederick Halfacre Nov 11, 2014. 7 Replies

Hi,I'm looking for recommendations for a good neurosurgeon in Cleveland, Ohio. I had a ruptured AVM removed via craniotomy 2 decades ago. I was given a clean bill of health after a long recovery and…Continue

Comment Wall


You need to be a member of Mid-West AVMers to add comments!

Comment by jordanj86 12 hours ago
Tanya... Im not a parent, but i had an avm at the same age... I can help out as best as possible if you would like.
Comment by Tanya yesterday
Looking for other parents in the Chicago area. My daughter is 9. Looking to connect with a similar families.

Comment by Madere (dancermom) on August 8, 2015 at 2:16am
Sally, just click "Leave Group" right above the member photos if you are trying to exit.
Comment by TLo on January 27, 2015 at 9:44am
Thank you Deb c! It's so nice being a part of this and hopefully the awesome neurosurgeon I had can help someone else :)
Comment by Deb C. on January 26, 2015 at 3:46pm
Hi Tara! Glad you able to find the medical help you needed and that you joined this site and this subgroup.Love that you want to help others because we all need support on this AVM journey we all are going through. We're also here to lend our support to you as well.
Comment by TLo on January 26, 2015 at 1:02pm
Thank you takemeasiam! I love having people to relate to and answer questions for :) I will keep everyone up to date!
Comment by takemeasiam on January 26, 2015 at 8:38am

Welcome to the group Tara. Glad you found us. I'm glad you found an amazing clinic for treatment. Let us know how your recovery progresses and I hope you are feeling better every day.

Comment by takemeasiam on January 26, 2015 at 8:37am

Comment by TLo on January 26, 2015 at 5:31am
Hi my name is Tara and I am 25 years old. I had a hemmhorage in my left temporal lobe close to my sylvian fissure in August 2014. I just had an embolization and craniotomy on January 13th and 14th. The doctor I had was amazing and from Mayfield clinic in cincinnati where they specialize with brains and spines. I hope I can help someone and I am still recovering very much from the surgery. I am happy to be a part of this group. God bless us all :)
Comment by mrsjessa on December 28, 2014 at 3:23am
Hi everyone! I'm new to this site. My story started in September 1995 and is in my profile! Anyone go uo UIHC?

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Blog Posts

Two years Post Gamma Knife

Posted by djs on October 12, 2015 at 8:04pm 0 Comments

This post is mostly for my benefit, no need to respond. One October 7th I had my two year testing since Gamma Knife, a cerebral angiogram (what a fun filled day). They say I am now AVM free but why don’t I believe it? Maybe it was the vision…


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