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Trigeminal Neuralgia
lazydazey posted:
Posted on chronic pain board, posting on this one too; saw a story on evening news (ABC) about Trigeminal Neuralgia, a woman had this for years and her doctor came up with a procedure to help her, he cushioned the irritated nerves with a piece of felt, and fixed her problem. Hope this helps someone!
12 Replies |Watch This Discussion | Report This| Share this:Trigeminal NeuralgiaPosted on chronic pain board, posting on this one too; saw a story on evening news (ABC) about Trigeminal Neuralgia, a woman had this for years and her doctor came up with a procedure to help her, he cushioned the irritated nerves with a piece of felt, and fixed her problem. Hope this helps someone!
angelmaf00 responded:
Please tell me more about the piece of felt that helped. I am a trigminal neuralgia sufferer and have not heard of felt. Any info I would appreciate. Thank you.
Report This| Share this:Trigeminal NeuralgiaPlease tell me more about the piece of felt that helped. I am a trigminal neuralgia sufferer and have not heard of felt. Any info I would appreciate. Thank you.
lazydazey replied to angelmaf00's response:
I don't know what kind of felt, I saw this on the ABC evening news yesterday; go to their website, abcnews.go.com/, type Trigeminal Neuralgia in the search box at the top, when it brings up the page, it should be the first article (after the ads) and is titled "Eliminating Pain: How a piece of felt did what pain killers could not".I don't have this condition, mine is back stuff, but I thought this might help someone, somewhere.... this sounded brand new to me, don't know if other doctors are doing it, but this is where I got the info from that I posted about. I hope this helps you, in some way, and I hope you find relief. We pain sufferers need to help each other, we are in a club that gets bigger every day, and one I never wanted to belong to! God bless, and take care.
Report This| Share this:Trigeminal NeuralgiaI don't know what kind of felt, I saw this on the ABC evening news yesterday; go to their website, abcnews.go.com/, type Trigeminal Neuralgia in the search box at the top, when it brings up the page, it should be the first article (after the ads) and is titled "Eliminating Pain: How a piece of felt did what pain killers could not".I don't have this condition, mine is back stuff, but I thought this might help someone, somewhere.... this sounded brand new to me, don't know if other doctors are doing it, but this is where I got the info from that I posted about. I hope this helps you, in some way, and I hope you find relief. We pain sufferers need to help each other, we are in a club that gets bigger every day, and one I never wanted to belong to! God bless, and take care.
angelmaf00 replied to lazydazey's response:
Thank you for your response, I read the ABC's article, nothing new for me. I read so much about my condition, all procedures are with many side effects and can have life changing results. Pain is most horrible when it occurrs which is too often.
Hope you feel better, and God guide you to a wonderful healing.doctor.
Hope you feel better, and God guide you to a wonderful healing.doctor.
Report This| Share this:Trigeminal NeuralgiaThank you for your response, I read the ABC's article, nothing new for me. I read so much about my condition, all procedures are with many side effects and can have life changing results. Pain is most horrible when it occurrs which is too often. <br />Hope you feel better, and God guide you to a wonderful healing.doctor.
lazydazey replied to angelmaf00's response:
I am so sorry this didn't help you, may the good Lord help your pain, and I hope someone, somewhere, comes up with something that will help you-if I hear of anything else (and my ears always perk up at health news, even if it doesn't affect me directly!) I will post it. Take care, and God bless.
Report This| Share this:Trigeminal NeuralgiaI am so sorry this didn't help you, may the good Lord help your pain, and I hope someone, somewhere, comes up with something that<u> will</u> help you-if I hear of anything else (and my ears always perk up at health news, even if it doesn't affect me directly!) I will post it. Take care, and God bless.
angelmaf00 replied to lazydazey's response:
Thanks for your concern. Prayers are the answer. I have great doctors, but unfortunately I still suffer. Presently I can live a productive life, I hope that it remains this way. But when the pain attacks it is another story. God Bless you.
Report This| Share this:Trigeminal NeuralgiaThanks for your concern. Prayers are the answer. I have great doctors, but unfortunately I still suffer. Presently I can live a productive life, I hope that it remains this way. But when the pain attacks it is another story. God Bless you.
RedBear2005 replied to angelmaf00's response:
Actually the padding it wasn't "felt" in the usual sense. MVD is done with small strands and pieces of teflon padding. If you would like to understand more about your treatment options and talk with people who are going through the same journey as you are, feel free to visit http://www.livingwithtn.org. I am a moderator there, and resident research analyst for the site. I've been talking with TN patients for the past 16 years, and have web-published a number of websites on the disorder.
Go in Peace and Power
R.A. "Red" Lawhern, Ph.D.
Master Information Miner
Go in Peace and Power
R.A. "Red" Lawhern, Ph.D.
Master Information Miner
Report This| Share this:Trigeminal NeuralgiaActually the padding it wasn't "felt" in the usual sense. MVD is done with small strands and pieces of teflon padding. If you would like to understand more about your treatment options and talk with people who are going through the same journey as you are, feel free to visit <a href="http://www.livingwithtn.org">http://www.livingwithtn.org</a>. I am a moderator there, and resident research analyst for the site. I've been talking with TN patients for the past 16 years, and have web-published a number of websites on the disorder. <br /><br />Go in Peace and Power<br />R.A. "Red" Lawhern, Ph.D.<br />Master Information Miner
angelmaf00 replied to RedBear2005's response:
Thank you for your response, I have had Cyberknife surgery done this past February. I am now experiencing TN on the other side of my face, which I am told is very rare. I will look into livingwithtn site. I pray for all doctors, God Bless and may you use the talents He gave you to the fullest..
Report This| Share this:Trigeminal NeuralgiaThank you for your response, I have had Cyberknife surgery done this past February. I am now experiencing TN on the other side of my face, which I am told is very rare. I will look into livingwithtn site. I pray for all doctors, God Bless and may you use the talents He gave you to the fullest..
RedBear2005 replied to angelmaf00's response:
Feel free to come back with questions here at WebMD, or to join LivingWithTN, where you can talk with hundreds of others who understand the journey. We presently have a membership of over 1500 patients or family members, not all of them active. There is also a real time chat room that some people find quite helpful.
Regards, Red
Regards, Red
Report This| Share this:Trigeminal NeuralgiaFeel free to come back with questions here at WebMD, or to join LivingWithTN, where you can talk with hundreds of others who understand the journey. We presently have a membership of over 1500 patients or family members, not all of them active. There is also a real time chat room that some people find quite helpful. <br /><br />Regards, Red
angelmaf00 replied to RedBear2005's response:
Thank you for the invitation. I hope and pray all TN patients receive the help that they need. This is an awful battle to face. I wish more research will be done in the future, Presently, there certainly is not enough to help us through this agony. God help all of us on this journey.
Report This| Share this:Trigeminal NeuralgiaThank you for the invitation. I hope and pray all TN patients receive the help that they need. This is an awful battle to face. I wish more research will be done in the future, Presently, there certainly is not enough to help us through this agony. God help all of us on this journey.
Precisely replied to RedBear2005's response:
Thanks for your input. I was diagnosed with trigeminal neuralgia in 2007 and have had three episodes, each one lasting longer and more intense than the last. I have been in pain since June of this year and take 1200 milligrams of Carbamazapine a day; sometimes more. I am seriously considering having the surgery and have been following any news that I can find on it. This condition is so confining and I have never experienced such pain. I don't want to depend on pain medicine to live a normal life. Again, thanks for your input; I will visit your site.
Report This| Share this:Trigeminal NeuralgiaThanks for your input. I was diagnosed with trigeminal neuralgia in 2007 and have had three episodes, each one lasting longer and more intense than the last. I have been in pain since June of this year and take 1200 milligrams of Carbamazapine a day; sometimes more. I am seriously considering having the surgery and have been following any news that I can find on it. This condition is so confining and I have never experienced such pain. I don't want to depend on pain medicine to live a normal life. Again, thanks for your input; I will visit your site.
RedBear2005 replied to Precisely's response:
Precisely, I contribute at http://www.livingwithtn.org. In that venue, I have written a 70-page "face pain info" paper that is intended to assist people in precisely the situation you find yourself. Feel free to join and talk with other patients. There are 1500 members. I also wrote almost all of the Wikipedia entry for Atypical Trigeminal Neuralgia.
Be advised that some patients may not be good candidates for surgery, particularly those who have predominantly Atypical TN, with its nearly constant 24-7 aching, burning, searing pain. You will need a careful workup by a doctor who has no financial self-interest in your agreeing to the procedure he or she recommends. If you care to correspond through lawhern@hotmail.com, I can also send you authoritative papers on surgical outcomes.
Go in Peace and Power
Red Lawhern, PH.D.
Resident Research Analyst, Living With TN
Be advised that some patients may not be good candidates for surgery, particularly those who have predominantly Atypical TN, with its nearly constant 24-7 aching, burning, searing pain. You will need a careful workup by a doctor who has no financial self-interest in your agreeing to the procedure he or she recommends. If you care to correspond through lawhern@hotmail.com, I can also send you authoritative papers on surgical outcomes.
Go in Peace and Power
Red Lawhern, PH.D.
Resident Research Analyst, Living With TN
Report This| Share this:Trigeminal NeuralgiaPrecisely, I contribute at <a href="http://www.livingwithtn.org">http://www.livingwithtn.org</a>. In that venue, I have written a 70-page "face pain info" paper that is intended to assist people in precisely the situation you find yourself. Feel free to join and talk with other patients. There are 1500 members. I also wrote almost all of the Wikipedia entry for Atypical Trigeminal Neuralgia. <br /><br />Be advised that some patients may not be good candidates for surgery, particularly those who have predominantly Atypical TN, with its nearly constant 24-7 aching, burning, searing pain. You will need a careful workup by a doctor who has no financial self-interest in your agreeing to the procedure he or she recommends. If you care to correspond through lawhern@hotmail.com, I can also send you authoritative papers on surgical outcomes. <br />Go in Peace and Power<br />Red Lawhern, PH.D.<br />Resident Research Analyst, Living With TN
Precisely replied to RedBear2005's response:
Thank you so much for the info; I have an appointment with my neurologist this month. My husband has been very supportive in helping with my research, he found this site for me. We are very hopeful that I will be a good candidate for the surgery. Currently I am retired but I'm pursuing a degree in counseling psychology in order to rejoin the workforce. Keeping up with classes is difficult right now but I am determined to complete this semester of courses, even through the pain. I certainly will connect with the other patients dealing with TN. I had no idea there were so many others going through the same ordeal. Thanks again, I'll keep in touch.
Report This| Share this:Trigeminal NeuralgiaThank you so much for the info; I have an appointment with my neurologist this month. My husband has been very supportive in helping with my research, he found this site for me. We are very hopeful that I will be a good candidate for the surgery. Currently I am retired but I'm pursuing a degree in counseling psychology in order to rejoin the workforce. Keeping up with classes is difficult right now but I am determined to complete this semester of courses, even through the pain. I certainly will connect with the other patients dealing with TN. I had no idea there were so many others going through the same ordeal. Thanks again, I'll keep in touch.
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