We are patients living with Trigeminal Neuralgia, here for your support.
-
Scott Orn
- Male
- San Francisco, CA
- United States
- Blog Posts (19)
- Discussions (31)
- Groups (7)
- Photos (2)
- Photo Albums
- Videos
Scott Orn's Groups
My Blog: Kenny Kellogg
Loading feed
Scott Orn's Discussions
Community Chat: Living With Atypical TN
Started this discussion. Last reply by janetm Aug 30, 2011. 11 Replies 0 Likes
Trouble Sending a Message (Send Button Won't Click)
Started this discussion. Last reply by Scott Orn Jul 25, 2011. 2 Replies 0 Likes
Trigeminal Neuralgia Video - Please Rate & Embed on your Blog
Started this discussion. Last reply by Victoria Feb 18, 2010. 14 Replies 0 Likes
Gifts Received (15)
Red Ribbon
From Barb Shakespeare
Patriotic Heart
From Shirley Warren
Red Ribbon
From zentn
Red Ribbon
From Dawn Hadden
Hi Everyone @ LivingWithTN
Latest Activity
Profile Information
- Please indicate your membership type
- Friend
- What type of facial pain do you have?
- Other/Not Sure
- What treatments have you undergone (or will undergo)? With what success?
- N/A
- Please share your TN story with us...(How did your pain first emerge and then change over time? Were you ever misdiagnosed? Do you believe your pain was caused by dental work? Have you had unsuccessful surgeries or medications?)
- I’m the co-founder of this site and help run a group called Ben’s Friends (www.BensFriends.org) that builds patient support networks for people with rare conditions. I do this cause I love it. I’ve met so many wonderful friends on this journey.
It all started when my buddy, Ben Munoz, had a stroke caused by a rare condition called AVM. Ben survived but during recovery he couldn’t find a support group…so he started one called AVMSurvivors.org. We realized we were helping a lot of people so we started many more. Today we run 30 online support groups and are growing rapidly, thanks to the wonderful volunteer moderators that help manage the communities.
Find out more about Ben’s Friends at www.BensFriends.org and watch our 60 second YouTube Video at http://youtu.be/YBeRFnJkleU
I’m also at these sites and love new friends!
Twitter: https://twitter.com/scottorn & Facebook: http://www.facebook.com/scottgableorn
If you would like to help us spread the word about patient support, please post about us on Facebook, Twitter and Blogs. Pasting in the URL, or Internet Address, of this community will make it easier for others to find us and get the support they need!
My Blog
Scott Orn's Photos
Scott Orn's Blog
Scott's Bio
Posted on February 10, 2012 at 6:03am 2 Comments 0 Likes
I’m the co-founder of this site and help run a group called Ben’s Friends (www.BensFriends.org) that builds patient support networks for people with rare conditions. I do this cause I love it. I’ve met so many wonderful friends on this journey.
It all started when my buddy, Ben Munoz, had a stroke caused by a rare condition called AVM. Ben survived but during recovery he couldn’t find a support group…so he started one called…
Reminder: Please don't recommend Medication or Treatments if you are not a doctor
Posted on March 29, 2011 at 10:30pm 2 Comments 0 Likes
Folks - just a friendly reminder to please not recommend treatment options or medications. We are not doctors and these decisions are best left up to an individual patient and their doctor. It's fine to discuss these things but safety is our number 1 priority and to be safe, everyone has to make decisions in conjunction with their doctors.
This is a beautiful community, one that I'm incredibly proud to be a part of. We're growing so fast that I thought this reminder was appropriate.… Continue
This is a beautiful community, one that I'm incredibly proud to be a part of. We're growing so fast that I thought this reminder was appropriate.… Continue
Big News: Our Friend Alex Bain is Sponsoring LTN for 3 Months!
Posted on July 20, 2010 at 12:45am 4 Comments 0 Likes
Ben and I have exciting news! Our friend Alex Bain (http://www.livingwithtn.org/profile/AlexBain) has been touched by the love and support on Living With Trigeminal Neuralgia and asked us if he could…
Continue Interesting NPR Article & Video
Posted on November 9, 2009 at 1:12pm 2 Comments 0 Likes
A friend sent along an NPR article on Trigeminal Neuralgia. Thought folks would want to check it out: http://www.npr.org/templates/story/story.php?storyId=120140173
Custom Hospital Gowns
Posted on October 13, 2009 at 12:00am 2 Comments 0 Likes
I'm always blown away by the creativity of the people on LivingWithTN and the other networks that Ben and I help run. I highlighted the work Shalon, a member of AVMSurvivor.org, on my personal blog today. Shalon has to go to the hospital a lot and got tired of the drab hospital gowns, so she started a gown making business.
I thought the ladies of the LTN Fashion Show would appreciate the… Continue
I thought the ladies of the LTN Fashion Show would appreciate the… Continue
Comment Wall (803 comments)
- At 4:46pm on May 30, 2012,
mary said… Thanks for the welcome, looking to find out as much info as I can!
- At 9:25pm on May 29, 2012, JA said…
Thanks, Scott, for your kind welcome. It helps to learn about this horrible condition from some of the veteran TN people. JA
- At 9:11pm on May 22, 2012, shannah said…
- I am just so thankful that I know that I'm not alone in this horrible disease .I think this will help me get through this just knowing that others deal with the same problem as I am .
- At 8:38pm on May 22, 2012,
shanday200 said… Thank you so much for the welcome Im just so thankful Im not alone!
- At 4:33pm on May 22, 2012,
Mary516 said… Thanks for the welcome!
- At 6:43am on May 21, 2012,
skyblue said… Hi Scott:
Thank you. Feeling much better since acupuncture. Luckily this was a short lived irritation
from dental work. I see that you are from San Francisco. May I recommend Dr. Peter Goldman chiropractor. He used to practice in New York and had a huge following. This man is a gifted healer. He works with people with all types of medical problems and works wonders.
- At 1:01am on May 19, 2012, Katie317 said…
- Thank you for the welcome! Nice to meet you!
- At 3:29pm on May 18, 2012, LUCKY2BHERE said…
Dear SCOTT,
Please accept my apology for using the wrong name in my last message to you.....Not quite sure where i got Ben from. But I think he is your buddy. But I am so embarrassed. I am so sorry about the name mix up!!! OOpppps!!!
Just,
Lucky
- At 3:18pm on May 18, 2012, LUCKY2BHERE said…
Hi Ben,
I am a new member to this site, just joined last night ... and I wanted to thank you for welcoming me to the TN Support Group. I joined the site, via my cell phone, but now I am on my lap top computer, so I;m just starting to check it out. I will definitely keep your name in mine, if I have any questions, since you are a co-founder. You are a man to know. And also I want to thank you and your friends for taking the time and everything else that it took to establish these online support group sites!!! My hat goes off to you and your friends!!!! Years ago, I was affiliated with the ACPA as a Chairperson, and I started my own Chronic Pain Support Group, where we would meet a couple times a month. I really enjoyed that experience. I recently have been considering starting up a support group for those of us with TN, in the Sacramento, CA area. I still need to do more research to determine if there are enough TN sufferers in the Sacramento area that would be interested in attending group meeting maybe once a month. And also, I have to be realistic about my own health, which is not too good right now. But maybe it can be something I can do in the future, when my health is better. If you have any thoughts on this matter, please let me know. I see that you live in San Francisco, that is where I had my unsuccessful brain decompression surgery. ;-(
Anyways, I am going to send you a friend request... Thanks again for the warm welcoming.
As Always,
LUCKY
- At 6:10am on May 18, 2012, Janey1982 said…
Thanks you. This site is amazing!
Please Like Us On Facebook and Follow Ben's Friends On Tumblr and Twitter
To Support LivingwithTN.org, Click an Ad. Or Two.
Powered by Bensfriends.org
This community is part of the Ben's Friends network of patient communities. Learn more at bensfriends.org.
Patient Communities
Acute Disseminated Encephalomyelitis (ADEM)
ADHD/ADD
Adrenoleukodystrophy (ALD)
Amyloidosis
Arteriovenous Malformation (AVM)
Ataxia (International)
Ataxia (U.S.A.)
Atrial Septal Defect
Brain Aneurysms
Charcot Marie Tooth (CMT)
Chiari Malformation
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Crohn's Disease
Disabilities
Eagle Syndrome
Erythromelalgia
Fabry
Fibromyalgia
Glossopharyngeal Neuralgia(GPN)
Lupus
Multiple Myeloma
Myositis
Narcolepsy
Primary Sclerosing Cholangitis (PSC)
Psoriatic Arthritis (PsA)
Synovial Sarcoma
Trigeminal Neuralgia (TN)
Von Willebrand's Disease (VWD)
Other Rare Diseases
© 2012 Created by BensFriends.org
