I would like to start a group to collect some information about people with TN and some stats about our lifestyles and see if there are some common issues that we have. I intend to use percentages and not names in the results so I assure you that this is a confidential assessment only. I would like to have some feedback from as many people with TN as possible and the survey results would be researched as percentages of people in our survey that have TN and for example,say 24% of the group have at least one pet. What do you think? Would you be interested in answering a few simple questions about your lifestyle,etc?
I don't have a problem with it as long as it remains above board. I wonder of the NIH or any other medical groups have done anything similar. For instance, they have found that people with TMJ problems are mainly women, have had birds as pets and have contracted chamydia at some point in their lives. Now, the last part, some people might not want to share. But they are interesting statistics.
Greg, I think this is an excellent idea! Knowledge is power...who knows, your survey may lead to new discoveries about TN!!! I'm interested & would like to participate AND see the outcome of the survey information! THANKS! ;D
Greg: There are two papers already on the site which will take you a good distance toward the kinds of understanding you may be seeking. Start with "Who Gets TN" (http://www.livingwithtn.org/page/who-gets-tn) under the Face Pain Info tab above.
Be aware also that the TN Association has been running surveys since the late 1990s, to assess the financial impact of TN on patients, as well as to investigate what treatments have been used and found most effective. They haven't been successful in getting their data published, and they haven't been willing to let anybody else see the raw data either.
The methodological weakness of surveys conducted at a site of this type is that you will see responses from a self-selected subset of patients -- generally those who are still having trouble with their facial pain, but who are functional enough to take the time to respond to an inquiry. Whether those responses can be taken as "representative" is problematic. Likewise, you may want to think about what sorts of conclusions you are inclined to draw, before you design your questions.
If you get serious about this, we can set up a group for survey results, and broadcast a short letter to all of our 2750 members inviting them to log on and answer (a FEW) questions. Then you can extract the results into a spreadsheet. Be advised, however, that just over a thousand members have logged onto the site in the past three months out of our 2700-plus . So if a lot of them respond, you'll be in for quite a workload.
Feel free to followup by email to ■■■■■■■■■■■■■■■■■■■
By way of general followup: this is the abstract from one of the papers noted above:
Abstract
A demographic analysis was performed on 1726 patient registration records from 55 countries, at a peer-to-peer social networking website focused on Trigeminal Neuralgia. While some demographic outcomes aligned with sources in medical literature, the patient demographic for first emergence of neurological facial pain was found to be younger than commonly noted in medical literature, by at least 14 years (median age slightly under 41 years, versus "sixth decade" or even "seventh decade" commonly reported). An analysis was performed to evaluate the potential impact of youth bias in this finding, due to the online and self-selected nature of the patient community; youth bias was not assessed as a significant factor in demographic results.
Over a fifth of patients in the demographic self-identified their pain as "Atypical" trigeminal neuralgia. Up to 80% of the demographic was female. In at least a quarter to a third of the demographic, the patient initially mistook their facial pain for a dental problem and saw a dentist as the first medical professional consulted. In less than a quarter of cases involving a dental practitioner, was the pain promptly recognized to be non-dental in character and the patient referred to a medical doctor. In a third of cases seen by a dental practitioner, the patient was treated for non-existent dental problems and pain did not resolve.
I read the `who gets TN' and its not really the direction of what I had in mind...I work with a guy who has MS and we got talking about the `myelin' coating of the nerves and how that can affect his MS and apparently how that affects me with TN.
So,I am more leaning towards research on a wider range of comparisons and corelations for people with TN.
For sure,the `who gets TN' is worth reading,so I appreciate you pointing that out to me.
I am not actually seeking anything,as you say.
I dont know if my effort will uncover anything,all I know is that I cant just sit around waiting for something to happen and a cure is found for TN. I am puttting out energy to this site in the hope that others wish to be part of ,maybe something amazing,once information is analysed and documented about `the group that we are'.
Feel free to have a go at the project, Gregg. Just be aware that you're talking about potentially hundreds of hours of personal work to process the feedback you get. I'm not a wizard when it comes to spreadsheet analysis, but I know a fair amount about methods in Excel. You can call on me if you'd like that kind of assistance.
thank you for the positive feedback about what I am going to start.
If you have a question that you feel would be useful or is associated with some coincidence that you think maybe of use please send it in,I would like to hear from you.
I had an unusual occurance happen to me today...I was at the airport seeing my youngest daughter(17) off on her student exchange 12 month trip to Denmark and I was crying because I was sad to see her go. I didnt cry alot,however,the TN that has been on my lip and nose and eye for the last 3 weeks has subsided and I can eat and drink without getting `zapped'. Has anyone else experienced that or something similar???
Hi Greg Unfortunately I have had a kinda similar situation in that not only do I get zapped when I eat I also get the deep pain in my upper teeth nose and its like I can now anticipate when biting down that its going to happen. And given the fact I have been told its only five months into this early on I understand I really don't want to chew period...I avoid it until I am absolutely hungry and have to actually chew something so unlike me...But I have had no remission for any set period of time its just daily growing in intensity... so yes I understand what your saying... thanks tho for mentioning it..
I can help! I have a degree in Statistics. I was only diagnosed last week. Right now I am home trying to get this under control. Red is right. This is a huge project and honestly the data wouldn't necessarily be valid. I could email one of my old professors to see what he thinks about how to design the sample. What sample size would we be expecting?
