Liz-I would like to help to get Dr. Oz to help but i also would like to get Dr. Phil to help explain how not all medication causes the "drug buzz effect when taken correctly as needed to treat medical conditions". I was completely contoled by RF procedure that blocked pain signals as I suffer from migraines from injured nerve above eyebrow. I have stressinduced migraines that r debilitating cuz of mental torture from my mother and the system and me and my children have been thru the most unbelievable torture the last 7 yrs. hope u have a good day !!! xoxokris
Great Idea!
Lisa (iamrite) said:
I guess my problem is seeing how Dr. Oz has pushed other health issues before in real nutty, outer space, looney ways. He had a special on Aspberger's and I sat there aghast at some of the things that he said. I don't think it does any good to try and petition someone that has never taken seriously the issue of TN.
As I am new to this condition, I had not seen the Doctors episode, so I will be checking that out if I can find it. Personally it depends on what the reasoning is for why you want light shed on this issue. If you want to educate the public, honestly, the best way to educate people is to tell them your story. I know, I for one, tune out on conditions that I know nothing about or do not know anyone afflicted with it.
If the reason is to find funding for this condition for research (which I thought was why the originial idea was fronted) Dr. Oz is not the way to go about that. University's and drug companies are the ones that decide that. I highly, highly doubt that anyone in either of those industries listen to, nor get advice from, Dr. Oz. Again, that is just my opinion.
Now if we wanted to petition the CEO of a major drug company as a collective group, that i could get behind. But that is just me.
Yes the medication is a problem as is driving while using it as was posted a few days ago.
kris765 said:
Liz-I would like to help to get Dr. Oz to help but i also would like to get Dr. Phil to help explain how not all medication causes the "drug buzz effect when taken correctly as needed to treat medical conditions". I was completely contoled by RF procedure that blocked pain signals as I suffer from migraines from injured nerve above eyebrow. I have stressinduced migraines that r debilitating cuz of mental torture from my mother and the system and me and my children have been thru the most unbelievable torture the last 7 yrs. hope u have a good day !!! xoxokris
The Dr Oz idea was to bring light to the condition so maybe, somehow, someone would step up to the plate and do more trials and research. Again many have the problem and it's a big one.
Scott said:
I personally have never seen the show. I still believe that getting the word out can benefit us. Before I got tn I had never really heard of it. The doctors were of no help other than the nuero saying it was in the trigeminal nerve but he couldn't find anything wrong and he couldn't have done anything about it because it would be deep inside my brain (at that time I only had numbness). I found out about tn by extensive searching on the internet. I would be open to the CEO idea or other avenues. I have an open mind to new ideas that I can say yea or nay to. A closed mind opens no doors. That is just my opinion. Anyway thanks everyone for the lively discussion, it keeps my mind working! Keep flying your plane till it stops!
Scott
It would be great to have an awareness public event. I don't know if there are enough TNers of out there. I had heard of TN some time ago but not since. When I told my Pastor, he had never heard of it and so many people since then. I know that the Doctors did a small clip in TN and MVD surgery around the 15th of December but it was short. If Dr. Oz did a show it would be targeted toward vitamins and minerals. I did look up what vitamins and minerals that were good for nerve health and omega 3 vitamin E was one. I now eat my ground flaxseed in my oatmeal and I eat more tuna and sardines which are all rich in omega 3. Maybe the local newspaper would be a great place to start. It is such a disabeling disease!!! Maybe we should all make a date and call our local newspaper and beg them to do a story to bring awarness to TN. I pray for a cure. Kimburlee
Hi Liz- i think i read something on the site sunday that stated Dr. Oz had done a segment on TN but not sure where I read it or it may have been at 1 of other fb sites i go visit but pretty sure was on here!! hope ur day is a good 1 xoxokris
kim - i think that would be a great idea if we could work together and get a write up that mentions all the different components of TN and then try find as many ppl from different areas to submit the write up!! I think the tv stations may also agree to do short segment just to get awareness and then it could reach ppl that have not searched for a support group when they think they r all alone as many of us r.!! have a good day !!!Kris
kimburlee said:
It would be great to have an awareness public event. I don't know if there are enough TNers of out there. I had heard of TN some time ago but not since. When I told my Pastor, he had never heard of it and so many people since then. I know that the Doctors did a small clip in TN and MVD surgery around the 15th of December but it was short. If Dr. Oz did a show it would be targeted toward vitamins and minerals. I did look up what vitamins and minerals that were good for nerve health and omega 3 vitamin E was one. I now eat my ground flaxseed in my oatmeal and I eat more tuna and sardines which are all rich in omega 3. Maybe the local newspaper would be a great place to start. It is such a disabeling disease!!! Maybe we should all make a date and call our local newspaper and beg them to do a story to bring awarness to TN. I pray for a cure. Kimburlee
There was a 30 minute program on our local news on Dec 12 about TN!! I was so excited to see this and my husband watched with me, as I am learning what this is all about as well as he is (4 months in). I tried to find the 'Medical Monday' show, but only found the transcript - http://www.newschannel5.com/story/16308969/facial-pain-and-trigeminal-neuralgia-december-12-2011-dr-robert-mercile-and-dr-john-witt - with the doc's names and what was discussed. Of course, they are neurlogist / neursurgeons, so they are more interested in the surgical aspect; but one thing they mentioned on the show was that the procedures have a high percentage of 'fixing' the pain...with reading on here, I am not sure that is correct! - or at least, not a lasting cure anyway. I am all for getting TN out to the masses, but it needs to be done in a way that will help, not hurt with information that will deter from getting us REAL help instead of taking vitamins / doing alternative therapy to 'cure' what NO ONE can understand. I don't know about you guys, but it is SO VERY hard to explain what I am going through with others. My family is SO very supportive, but how do you 'show' how horrificly painful this is when you have no outward visible problems? That is why I am skeptical to ask people to exploit our disease when they themselves may not 'buy' into what we are really going through. The Medical Monday 30 minute show was GREAT, because it was from the perspective of neuro doc's that treat and 'buy into' how BAD this is. We have to be careful who we approach with this (TV doc's), as they could hurt us, without meaning to, in misinforming the public and not giving a true pic of TN. The newspaper bit is a great idea, and again, getting more local TV news programs to showcase this disease with professionals that deal with TN will be huge! I am willing to do whatever I need to - ...
Liz,
It's obvious there's a lot of misunderstanding and lack of understanding on the awareness and research issue.
"Someone" will only "step up to the plate" if they're very generously funded. No one is going to start additional research out of the goodness of their heart. It takes about $150,000 just for one researcher. Then add to that all the other expenses needed for the researcher to actually get started.
There is research already going on and I wish you'd do your homework on TNA The Facial Pain Association before making it sound like nothing is being done.
Additionally, people generally don't understand what they can't see. There are many "Invisible Disabilities" that are fighting for awareness. Please just understand that you can't ram awareness down people throats. It's a process that first should involve family, friends and co-workers and spread out from there. If we have trouble (and we do) trying to get family, friends and co-workers to understand this condition, what are the chances of making the general public understand?
Yes, be enthusiastic - but in a realistic manner. First, do your homework. Dr Oz is promoting a treatment for TN that's not supported by research. That's dangerous. Try using him to make a case for TN and the people who matter won't take it seriously.
Liz said:
The Dr Oz idea was to bring light to the condition so maybe, somehow, someone would step up to the plate and do more trials and research. Again many have the problem and it's a big one.
Gloria, I totally agree with you. although we do not have Dr Oz in the UK I can put something together from the postings here and see the thread. We want and need a good "awareness" campaign with backing from credible sources if any impact can be made. You are correct also about starting at grass roots. I can hardly manage to make my own ( and quite caring) brothers understand my condition. I can see that a campaign would have to be very clever and fronted by someone of great credibility, so far they don't seem to be forming a line. It is up to groups like this one to stand up for suffering members and try to make a voice that shouts for help in a meaningful realistic way. The enthusiasm of this conversation would be better targeting a more credible exponent than the dubious sounding Dr Oz!
Liz:
Dr. Oz has nothing of substance to add to our cause. The book to which he has recently contributed advocates for a low-carb diet plus Vitamin B-12 infusions as a "cure" for TN -- despite a lamentable lack of medical evidence to support these wild claims. From probing his profile on the Web, I find that Dr Oz seems to be rather widely regarded by other medical professionals to be at best controversial for his business ventures into alternative medicine, and at worst an outright fraud for his own financial gain.
If you want to draw real attention to Trigeminal Neuralgia and facial neuropathic pain generally, then contact Sixty Minutes and ask them to run a segment on it that is better than the one to which the TN Association contributed last year. A major failing of the TNA effort in this area of public awareness was reinforcement of the stereotype of TN as "The Suicide Disease" -- an unfortunate and possibly self-fulfilling prophecy that does nothing to advance research on the problem.
Regards, Red
Liz - lets not let ppl discourage us from trying to pursue this as i have had friends hear TN mentioned on tv shows and have relayed it to me as they feel excited saying i know what that is cuz my friend has it!! That is not a huge awareness but there is a good chance theybmention it to their other friends so any lil amt of education helps!! I also have a friend that has a neurologist out of town and he has never met me but she mentioned TN to me and he always asks her how i am doing at her monthly appt!!! baby steps but we have to try to make some leaps along the way!!!! hope your feeling good today xoxokris
Until 2009, I thought "The Doctors" was a soap opera.
http://www.thedoctorstv.com/forums/220/topics/5365
It is a TV show - as is Oprah's Dr. Phil. I would enjoy chatting with him;)
Calling Dr. Howard, Dr. Fine, Dr. Howard, the original "Men in Black"; which brings us to a lack of money in research for this disorder, and the squeaky wheel gets the grease. bob
After reading this very long stream that has a lot of people interested I am finding two issues have emerged and are perhaps getting mixed up. Is the push to have Dr. Oz or some other highly publicized show spotlight TN to bring awareness to our condition OR are people hoping that Dr. Oz or someone like him will have answers for us on the show?
I agree that publicity is good BUT only if it is accurate. As another member has written, we don't want something highly publicized that is incorrect or only a snippet of information. Bad information could potentially harm future research funding.
If we are looking for someone to give us answers, then please re-read some of Gloria's posts. There are things being worked on in the background. I have been to a tremendous number of sites on TN (or at least the majority I could find) and our site probably has the most comprehensive explanations and answers all in one place.
In good health, Elaine I.
I like your idea very much. At least the part about getting our affliction out there. I would rather find a public personality I could stomach to tell you the truth, I have always found the man quite unctuous. More along the lines of a Michael J. Fox. You know, a movie star or other well known public figure that actually suffers from the disease themselves. Hmm..how to do this??
BTW, this disease IS being studied, although not as much as we would like, probably because TN is still listed as a rare disorder. I spoke with someone at the National Institute of Neurological Disorders today in an attempt to find out more information regarding the following statement listed in their TN fact sheet:
" The National Institute of Neurological Disorders and Stroke, a part of the National Institutes of health, is the federal government's leading supporter of biomedical research on disorders of the brain and nervous system. One NINDS-funded study is examining the neurophysiological characteristics of TN to see if the disorder is associated with abnormal sensory input from the peripheral nervous system. Observations from this study should allow scientists to better understand the nerve cell mechanisms of TN, develop better animal models of the disorder, and find better medical and surgical treatments for TN and other nerve pain disorders. Other NINDS-funded projects address TN through studies associated with pain research..."
I was particularly drawn to the portion of the statement regarding "abnormal sensory input..." If I am reading the sentence correctly, (RED !!!, help?) this study is interested in the relationship between TN pain and pain in other nerves in the body". I was told the study was a few years old and there really was not a lot of funded research, much of what there was, was old and/or outside of this country.
I have had what my Mayo doctor calls "pain amplification" in many parts of my body. Pressing gently on areas of my body is uncomfortable. A visit to the chiropractor lately has been, shall we say...jumpy, and filled with many oww, oww,owws. I have developed sciatica in BOTH of my legs. My lower back is a mess. My right arm doesn't feel like it should. The first nerve issue that was unusual for me was a case of subcutaneous neuropathy in January of 2011 that cleared up on its own.
Anyway, if people would like to think of someone other than the OZ, I would be happy to help.
Regards,
Phoebe
PS. I apologize for any grammar mistakes ahead of time.
As for showing to others what this condition is like the only thing that comes to my mind is having a TV crew follow suffers around or place a video camera on a sufferer. If this had been the case I would have been caught on "tape" at my psychiatrists office, at the pet boarding place, at my AA meeting, and the ER.
Has anyone heard of Salman Khan? He has TN. http://indiatoday.intoday.in/video/salman-khan-undergoes-successful-surgery-in-us/1/149727.html
Phoebe, the only celebrity that I know of that had TN is Gloria Steinem. Even better, her advocacy for certain issues is what has made her a celebrity.
For me, I wish someone would do a segment that isn't on classic TN, TN type 1, whatever. I'd like to read/see more discussions about TN2 or TNP.
Phoebe, the statement about the peripheral nervous system is fascinating to me. I have had various nerve issues for a long time, ever since a car accident that left some spinal nerve issues. Most of it is controlled.... but there has been numbness in several body parts, which is why I was scared at first it was MS. I wish there was more studying going on to see if these things connect somehow.
The new Doctors show is actually produced by Dr. Phil son Jay so that can b a double wammmmy if we go after Dr phil and his son Jay cuz sooner or later they will help us!! I sent message months back to Dr, Phil wanting to do a show on ppl that have to take medications and how it does not effect their ability to perform ur job. I graduated from college and worked several yrs until my mother destroyed my life and threw me on the couch where i was completely debilitated but she took my kids and that has been the only thing that destroyed me- as all can imagine what that would do to all of us as parents and not knowing ur kids are being protected and taken care of!!! xo kris
Bob Snodgrass said:
Until 2009, I thought "The Doctors" was a soap opera.
http://www.thedoctorstv.com/forums/220/topics/5365
It is a TV show - as is Oprah's Dr. Phil. I would enjoy chatting with him;)
Calling Dr. Howard, Dr. Fine, Dr. Howard, the original "Men in Black"; which brings us to a lack of money in research for this disorder, and the squeaky wheel gets the grease. bob