Great Lakes Area

Announcements of local get-togethers and events

Re: Great Lakes Area

Postby emily123 » Sun May 26, 2013 4:50 pm

I'm from the midwest and would consider going to a great lakes meeting
Last edited by emily123 on Sat Sep 19, 2015 4:54 am, edited 1 time in total.
30s. Cavernous angioma (left anterior temporal lobe) found on MRI in April, 2013. Hx of grand mal seizures but now normal EEGs. Onset of headaches age 15. Now headaches cause word retrieval issues.
emily123
 
Posts: 6
Joined: Fri May 10, 2013 3:08 pm

Re: Great Lakes Area

Postby silvertonguejen » Sat Oct 05, 2013 7:56 pm

I know this is a really old post, but I'm new to the site and live n Grand Rapids, Michigan. I'm having a difficult time finding a neurologist and neurosurgeon that really knows about cavernous angiomas. Just wondering if there is anyone near me with any recommendations.

Jennifer
User avatar
silvertonguejen
 
Posts: 7
Joined: Tue Oct 01, 2013 2:10 am

Re: Great Lakes Area

Postby rhea71 » Fri Oct 23, 2015 11:55 pm

Hi I'm relatively new to this site, I live in Michigan between Ann Arbor and Lansing and was wondering if there are any local get togethers, and if not, I would like to form one for support! Feels so isolated and alone.
User avatar
rhea71
 
Posts: 4
Joined: Wed Aug 28, 2013 2:06 am

Re: Great Lakes Area

Postby Elizabeth » Sat Oct 24, 2015 5:50 am

Rhea,
You might want to directly email or private message the people in this thread. I doubt most if them are checking in here often, but might be interested in meeting up. Best wishes!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
Moderator
 
Posts: 1644
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: Great Lakes Area

Postby Casey » Tue Jun 07, 2016 4:10 pm

Just signed in today. 1.5 yrs post brain stem. I live one Hr. North of Chicago.
Casey
 
Posts: 1
Joined: Tue Jun 07, 2016 3:58 pm

Re: Great Lakes Area

Postby Carterst4 » Tue Oct 11, 2016 2:13 pm

Hi,


The last posts are from a few years ago, but we will give this an attempt. We are from Kalamazoo area as well and wonder if the others who posted a few years ago still monitor this forum
Last edited by Carterst4 on Thu Oct 13, 2016 3:17 am, edited 1 time in total.
Carterst4
 
Posts: 4
Joined: Tue Oct 11, 2016 2:04 pm

Re: Great Lakes Area

Postby Carterst4 » Tue Oct 11, 2016 10:12 pm

H heai all,


This is the first time posting to this forum. We have been researching for years cavernous malformations but never have reached out to others who are living with this until today. We live in Kalamazoo and have been proactive in my husband's medical condition and find it very interesting reading many of the posts on this forum as most patients experience the same rhetoric as we have been for years. My husband suffers with debilitating head pain and we are advised these are migrates not associated to his condition, we have always questioned this.

Our next journey is to University of Chicago to see Dr. Awad, we are hoping to receive some advise on how to help with his head pain. Thus far we have seen local neurologist at Bronson Hospital in Kalamazoo, Mayo Clinic in Rochester Dr. Link where they felt he may have a low grade tumor. Seeking second opinions from Cleveland Clinic and U of M have advised they both believe it is a brain stem cavernomia.

I wish to you all never give up and continue researching and educating yourselves because you and those who love you will be the best advocates anybody can have and the Doctors do not know it all.
Carterst4
 
Posts: 4
Joined: Tue Oct 11, 2016 2:04 pm

Re: Great Lakes Area

Postby Elizabeth » Thu Oct 13, 2016 1:13 am

Carterst4,
Welcome. I think most of the people have migrated to facebook. Im not on facebook, but i think a lot of the people that were here, are on there now. Im in los angeles so i doubt i can offer much in terms of local help. From what i have heard though...Dr. Awad is awesome. I hope you find some relief for the pain...lots of "us" have pain...im lucky, i dont have pain, but ur husband is not alone for sure.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
Moderator
 
Posts: 1644
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Previous

Return to Local Get-Togethers

Who is online

Users browsing this forum: No registered users and 2 guests

cron