Information

Mid-West AVMers

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

Location: regional-group
Members: 108
Latest Activity: on Saturday

Discussion Forum

Hi from Mo

Started by AWhite222. Last reply by AWhite222 Feb 16. 4 Replies

Just wanted to say Hi. I live in St. Louis. We discovered my AVM when it ruptured in Feb 2012. I was 7.5 months pregnant at the time. I went through Gamma Knife in July of 2012. Last week I…Continue

Looking for doctors close to Toledo, OH area

Started by Lidibet. Last reply by brooke payne Dec 10, 2013. 4 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

Planes?

Started by daniellaco. Last reply by multistats Oct 3, 2013. 5 Replies

Hi! My name is Dani and I am from Nebraska. I am 16 and I have a grade 4 AVM located at the top of my brain stem. This spring, I am supposed to go to california with my school's music department. We…Continue

Where are our Mid-West AVMers located?

Started by Kimi. Last reply by Ans4102 Sep 29, 2013. 14 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

Comment

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

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: http://michiganradio.org/post/michigan-residents-disabilities-hit-h...
Comment by Deb C. on February 11, 2014 at 3:25pm

Hi Lidibet,

Glad you were able to see Dr. Rasmussen.

Take care,
Debbie

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.
Thanks

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

Lidia,

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,
Debbie

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,
Debbie

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?
Comment by Julie on October 19, 2012 at 10:41am
@Maritime-my neuro. works out of Henry Ford Hospital: one downtown and one in West Bloomfield. Call Neurology-I think the department is only downtown-they're a student hospital, but they are specialized in neuro.-related stuff.
Comment by Deb C. on October 11, 2012 at 8:10am

Martine,

Welcome. Wish I had some answers for you. But there are people who seem to come up with some. I would recommend joining the Extremity AVM's subgroup if you haven't. That group is for those of us who have or had an AVM somwhere other than the brain. Usually someone in that group has an answer for any question that is posed.

Take care,
Debbie

 

Members (108)

 
 
 

Help Us Help Others

Help Ben's Friends

Like, Follow & Forward Us!

Follow Me on Pinterest

To Support AVMSurvivors.org, Click an Ad. Or Two.

Are You in Crisis?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.

Photos

Loading…
  • Add Photos
  • View All

Blog Posts

Walking Again

Posted by John P. on March 18, 2014 at 8:00am 2 Comments

My craniotomy to remove my AVM was early in the first month of the year, but at first I could not walk at all and

many who had the same operation I am sure had the same

problem. After two months in the hospital I was able to

use a…

Continue

© 2014   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service