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Central Pain Syndrome - A Patient's Perspective

PostPosted: Fri Apr 14, 2017 9:43 pm
by PattiG
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

Re: Central Pain Syndrome - A Patient's Perspective

PostPosted: Thu Apr 27, 2017 7:50 pm
by Michelle2000
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

Re: Central Pain Syndrome - A Patient's Perspective

PostPosted: Fri Apr 28, 2017 12:07 am
by Elizabeth
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.

Re: Central Pain Syndrome - A Patient's Perspective

PostPosted: Sat Apr 29, 2017 3:12 pm
by PattiG
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

Re: Central Pain Syndrome - A Patient's Perspective

PostPosted: Wed Mar 20, 2019 1:19 pm
by Celcav09
Thank you for sharing your story Patti and for raising awareness on this debilitating pain. After I read about it, I became more interested and had been studying more about it. In relation to the distraction strategy you’ve been doing, did you also enrolled or received central pain sensitization intervention? I also have right thalamus cavernoma and Im in the verge of having surgery since it bled twice now and its on the surface per Dr Steinberg. Now I am trying to gather more info before Proceeding to surgery and prepare myself for the future.

Thank you for your hard work and efforts on educating us about this disease. You’re such an inspiration.

Cel

Re: Central Pain Syndrome - A Patient's Perspective

PostPosted: Thu Mar 28, 2019 6:21 pm
by PattiG
Hi Cel,
Thank you for your kind words.
I'm so sorry you know what CPS is. :(
Assuming you've done lots of research, I'd strongly encourage as much homework on CPS as you possibly can, since most drs. lack knowledge or awareness, including neurosurgeons. With this in mind, I'd also encourage discussing CPS w/ Dr. Steinberg and his team.
As far as I know, they're no "interventions" on CPS and very little to none on research. A neurologist is a primary provider w/ CPS follow-up and can only provide anticonvulsants or tricyclic antidepressants such as, Amitriptyline or Nortripyline for off-label 'treatment' of CPS. Some pts. find some level of 'relief,' while others like myself find no relief in them.
Sorry this is a long list of articles, but this will help w/ your research: :)

CPS Support and Resources on Facebook:

Central Pain Syndrome Warriors (closed group)
Central Pain Syndrome Foundation
Central Pain Nerve Center

EZines:

Stroke Connections Mag / Sep-Oct 2003
When the Pain Never Goes Away
http://strokeconnection.strokeassociati ... -Syndrome/

Stroke Connections Mag / Spring 2015
When Stroke Affects the Thalamus
http://strokeconnection.strokeassociati ... -Thalamus/

Stroke Connections Mag / Spring 2017
When Survivor's Are Hurting: Understanding Post-Stroke Pain
http://strokeconnection.strokeassociati ... roke-Pain/

Stroke Connections Mag / Spring 2017
A Central Pain Survivor's Perspective
http://strokeconnection.strokeassociati ... rspective/

Stroke Connections Mag / Fall 2018
Helping Other's Understand: Post-Stroke Central Pain
http://scmag-digi.strokeassociation.org ... io=22#pg24

Central Pain Syndrome: Awareness Brings Hope for the Future
https://www.youtube.com/watch?v=ftVECk4Vwy8&t=41s

As you are able to, pls keep us updated on how you're doing.

Best wishes and cheering you on,

Patti

Re: Central Pain Syndrome - A Patient's Perspective

PostPosted: Mon Apr 01, 2019 1:06 am
by Celcav09
I just checked my email. Thank you so much for The informations.. I’ll check them out. . Take care always.

Cel