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.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
PattiG
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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
18 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)
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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
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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.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
PattiG
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Location: Oregon

Re: Central Pain Syndrome - A Patient's Perspective

Postby Celcav09 » Wed Mar 20, 2019 1:19 pm

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
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Re: Central Pain Syndrome - A Patient's Perspective

Postby PattiG » Thu Mar 28, 2019 6:21 pm

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
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.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
PattiG
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Location: Oregon

Re: Central Pain Syndrome - A Patient's Perspective

Postby Celcav09 » Mon Apr 01, 2019 1:06 am

I just checked my email. Thank you so much for The informations.. I’ll check them out. . Take care always.

Cel
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