Deep Brain Stimulation (DBS) for Chronic Neuropathic Pain

Announcements of drug trials and other treatment information

Deep Brain Stimulation (DBS) for Chronic Neuropathic Pain

Postby PattiG » Wed Aug 30, 2017 4:44 pm

For anyone else suffering from central pain syndrome, UCSF Clinical Trials will be conducting a study on chronic neuropathic pain. http://clinicaltrials.ucsf.edu/trial/NCT03029884

After having four CM brain surgeries (my last on 3/9/10) I had 'sworn off' any further invasive procedures, but living w/ CPS and the agonizing, devastation it brings, I am strongly interested in participating. We'll see...

Best 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
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Re: Deep Brain Stimulation (DBS) for Chronic Neuropathic Pai

Postby Elizabeth » Fri Sep 01, 2017 12:42 am

I'm sorry you are not getting any relief yet, but great news that they are at least starting to look at a possible treatment. Hoping they find answers and pain relief at last!!!
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: Deep Brain Stimulation (DBS) for Chronic Neuropathic Pai

Postby PattiG » Fri Sep 01, 2017 2:52 pm

Thank you, Elizabeth. <3

I've put more thought into this and have changed my mind. In my heart of hearts, I don't have the stamina to go through another brain surgery and recovery. And the unknown outcome for myself is too big of risk.
I will continue to hope for new meds and/or non-invasive treatments.

Best wishes always,

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: 1072
Joined: Mon Sep 27, 2010 12:38 am
Location: Oregon


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