Central Pain Syndrome - A Patient's Perspective

Discussions of issues related to living with cavernous angiomas

Central Pain Syndrome - A Patient's Perspective

Postby PattiG » Fri Apr 14, 2017 9:43 pm

Though I WISH no one knew the meaning of central pain syndrome, CPS, I am so happy my story went live today! I'm also grateful to the editor of Stroke Connection, for giving me the opportunity to help spread awareness on this awful pain syndrome. http://strokeconnection.strokeassociati ... rspective/

Well wishes to all,
Patti
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
Cavernous Malformations & Central Pain Syndrome: http://support.stroke.org/site/News2?ne ... 1&id=17759
A Day in the Life of CPS @ http://www.youtube.com/watch?v=8ed6hazqNYU&feature=plcp
PattiG
Moderator
 
Posts: 1083
Joined: Mon Sep 27, 2010 12:38 am
Location: Oregon

Re: Central Pain Syndrome - A Patient's Perspective

Postby Michelle2000 » Thu Apr 27, 2017 7:50 pm

Patti,
"
I read (and shared) this on Facebook, and I thought, holy cow! Patti is more amazing than I thought she was!"

I hope many people are able to read your eloquent piece on CPS, and it inspires some scientist to find the solution.

Best wishes and relief,

Michelle
17 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
Michelle2000
Moderator
 
Posts: 709
Joined: Thu Dec 02, 2010 7:40 pm

Re: Central Pain Syndrome - A Patient's Perspective

Postby Elizabeth » Fri Apr 28, 2017 12:07 am

You are so right Michelle!! Patti is the super hero among us! Teaching us all how to handle hard, impossible things with grace! Thank you Patti for leading by example. Trust me, I'm taking notes but I could never imagine if I had to walk in your shoes. Always hoping for a cure for you and all those affected.
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: 1622
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: Central Pain Syndrome - A Patient's Perspective

Postby PattiG » Sat Apr 29, 2017 3:12 pm

Michelle and Elizabeth,

Thank you so much for your kind, thoughtful words and support. This means more than you know.
I've shared it w/ a few drs. and have received good responses. One can only hope they'll share w/ fellow HCP's to get the word out.

Heartfelt well-wishes,

Patti
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
Cavernous Malformations & Central Pain Syndrome: http://support.stroke.org/site/News2?ne ... 1&id=17759
A Day in the Life of CPS @ http://www.youtube.com/watch?v=8ed6hazqNYU&feature=plcp
PattiG
Moderator
 
Posts: 1083
Joined: Mon Sep 27, 2010 12:38 am
Location: Oregon


Return to Living With Cavernous Angioma

Who is online

Users browsing this forum: No registered users and 1 guest

cron