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
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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
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Location: Oregon

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

Postby oleblue » Mon Feb 19, 2018 3:46 am

Patti,

I just saw this post from September. If anyone is going to find out about how to find a way to resolve DBS it will be you. I hope UCSF realize what a amazing women you are, how you have already helped so many in our community. Chronic pain is a game changer period. What steps you've made forward it can take you backward and can paralyze you mentally and physically. I have a dear friend going through this now. The past 3 years after surgery to her heart, they paralyzed her and created so much nerve pain in her upper body, there isn't enough pain meds to stop the everyday pain. She has worked with so many pain management physician I just scratch my head why they can't stop the pain. She lost feeling from the waist down, from the waist up she is in a living hell. Hoping for a cure for DBS. You know my thoughts are always with you. Blessings find you and comfort you.
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Re: Deep Brain Stimulation (DBS) for Chronic Neuropathic Pai

Postby PattiG » Thu Feb 22, 2018 5:58 pm

Hi oleblue,

So good to see you here!
Thanks for the kind sentiments.
My heart goes out to your friend. Chronic pain definitely is a "game changer."
I was excited for this DBS study and seriously thought of participation until I truly thought it out. After too many surgeries, I knew in my heart this study wasn't for me. As you know so well, surgery drains you mentally and physically, and I presently just don't have what it takes.

Hugs and best wishes to you 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
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Posts: 1083
Joined: Mon Sep 27, 2010 12:38 am
Location: Oregon


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