Mid-West AVMers

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

Location: regional-group
Members: 123
Latest Activity: 4 hours ago

Discussion Forum

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

Looking for doctors close to Toledo, OH area

Started by Lidibet. Last reply by Shirasaya Nov 10, 2014. 5 Replies

Hello, I am Lidia, I recently find out I have an AVM in the rigth side of my brain, the neurosurgeon I saw in the hospital said it is grade 2, and wants to do a craniotomy on January, he also…Continue

Where are our Mid-West AVMers located?

Started by Kimi. Last reply by Shirasaya Nov 10, 2014. 20 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

Comment Wall


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

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?
Comment by Julie on July 7, 2014 at 7:13am
Since 7/11-7/21 is now AVM Awareness Week in MI and WI,,

how is everyone celebrating, raising awareness, notifying the media regarding your awareness event, etc.?
Comment by StlGirl on March 9, 2014 at 9:01pm
Hi, I live outside of St Louis(O'Fallon Mo) I just got the result of my MRI this past Thursday. I don't have any other information other than I have a cavernous malformation. I have a neurologist appointment on April 4th. Any advice would be much appreciated since I'm just playing the waiting game.
Comment by Julie on February 13, 2014 at 10:12am
If freezing your buns off isn't a big enough of a challenge, I'm sure a lot of people can relate to this:
Comment by Deb C. on February 11, 2014 at 3:25pm

Hi Lidibet,

Glad you were able to see Dr. Rasmussen.

Take care,

Comment by Lidibet on February 10, 2014 at 10:38am

Hello, Thanks for all your recommendations about Doctors in the area. I saw Dr. Rasmussen from Cleveland clinic. He suggest radiation or craniotomy for my AVM, he also mention that it is better to try radiation first. Just wondering if any of you know this Doctor and if you have any experience with radiation since I forget to asking if there a higher risk of bleeding after the procedure.

Comment by Deb C. on December 9, 2013 at 9:14am


I did a "Cleveland Clinic" search and found Dr. Mark D. Bain & Dr. Peter Rasmussen on another member's info who went to Cleveland Clinic. Hope this helps.

Take care,

Comment by Deb C. on December 9, 2013 at 8:58am

Hi Lidibet,

I don't have personal experience with either place, I do remember that there was someone who posted something years ago about getting help from the Cleveland Clinic. What you might do is go to the Members section and enter "Ohio" and "brain" as search terms and see if you come up where other AVM survivors in your area have gone. You also could try a searches for "Cleveland clinic" and "university of Michigan" in members to see if you could pull up fellow survivors who have gone there for help.

Best wishes,

Comment by Lidibet on December 9, 2013 at 5:42am

Hello, I am Lidia, I recently find out I have an AVM in the rigth side of my brain, the neurosurgeon I saw in the hospital said it is grade 2, and wants to do a craniotomy on January, he also explained about all the risk related to the surgery, and I am very afraid. I am looking for another opinion maybe at University of Michigan or Cleveland clinic. Does any of you know any doctor close to the Toledo, Oh area? Thanks

Comment by Julie on October 22, 2012 at 8:23pm
Hi-does anyone know of any places in Ann Arbor, MI, or Chicago, IL, that have no steps to enter/exit or within for rent or purchase?

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Blog Posts

so many surgeries...

Posted by desertlily83 on December 24, 2014 at 10:38am 24 Comments

Just thinking about all that my baby girl has to go threw first a drain on both sides of her head, after finding out about her avm, she's 10, then a monitor catheter in her head to monitore ICP pressures, then the Cranitomy surgery to remove part…


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