Quotes from Neuropathic Facial Pain and Trigeminal Neuralgia |
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Patients |
Just wanted to let you know that last newsletter was a good format and I enjoyed it. Thanks, E. S., patient Hello everyone, as a TN patient myself, I am very glad to be a member of an association that understands TN pain and those who suffer from it. Thank you all, R.A., Patient |
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THANK YOU FOR THIS WEBSITE. WHAT A BLESSING!!!! J.L., Patient We thought we were the only people in the world going through this. Your web sight is a big help, I have learned more through reading than I have in our three day hosipital visit. Tammy, mother of patient Your site is tremendous. The information, resources, and patient stories and quotes are all invaluable. I thank you for caring and them for sharing. Lil, patient If I'm going to have this curse, I am going to know everything there is about it, and then will want the next person to know what it is. One of the things that makes this such a hellish disorder is that NOBODY knows what it is.... We who have it have only each other to confide in...relatives, best friends, even our own neurologists are OUTSIDE of the sphere of understanding....but not those of us horridly linked to each other because we have it. And therein lies the strength of our Support Groups. I would have wilted long ago, but for Tim Guith and his/my group. Therese Hercher, patient Thank you for your informative website - it spared me much fretting & a long, fruitless wait at my doctor's office!! Regards, L., patient Thank you very much for your message and your kind words. Thanks very much for your help which has been invaluable to me over the years. Best regards, S. patient Thank you for the informative studies you have sent. It is much appreciated. While my pain is currently under 'control' one must be prepared for the next "attack". Best Regards, I.W., patient I received a brown envelope from you with alot of information on TNA, which is greatly appreciated. And it is not only on TNA, it has literature on many illnesses that can mimic TNA. Thank you so much for taking the time to gather this reading material because I know it will be helpful to many. It has already benefited me. Just want to say thank you. Hopefully I will be able to attend an event and meet everyone. Thank you again for all the material. You are a miraculous lifeline to people drowning in pain. For that, you have my lifelong gratitude. S.W., daughter of patient I will send a check for the life membership for our family. Thank you for investing it in your valuable work or in research. My husband, a TN sufferer for 15 years, finally got lasting relief on the right side as a result of a TNA regional conference in Nashville, TN where we met Dr MERICLE at Vanderbuilt. He was the 4th neurosurgeon who had tried!! So thank you TNA for sponsoring that conference! Alana has been a big help to us, too. Thank you for Alana!! J.S., wife of patient Humor and the support of my family is what keeps me going from day to day. I am not sure I would be here today if it were not for the TNA web site. You gave me hope when I thought there was none. I am working on a motivational speech that tells of my ongoing battle with TN, AD, and GP. I hope it will provide inspiration for others who suffer with this disease. James, patient Thanks for all your help. I am on my way to get some support and info. here in Canada but I will send the proper funds to become member of TNA. I could have not been able to cope all these years without your help and information. Maria, patient Thank you for sending the magazine (newsletter), I have sent a membership donation in the envelope provided in the magazine. I have had a problem getting a neurologist in my area who really understands Trigeminal Neuralgia and that the pain is so severe. At last I have one who has more understanding. I have to be guided by my health insurance and what they will allow. Thank you for all the literature you sent me it is very helpful. Thank you again M. C., patient I just wanted to say that this group is a god send. I live in an area where thereis no one really with TN. At first my doctors thought I had shingles, then when nothing happened with that treatment they started looking other things. Well they asked me about dental pain with no obvious dental problems over the years....light bulb there it was. So now a few months on and I am o an anticonvulstant which seems to be helping. Thanks again for this site it has helped my doctors and me out so much. K.A., patient I look forward to receiving the frequent the up-dates about medications, treatment options, information about people in the TNA community, conferences, etc. I have already begun to research neurosurgeons. There seems to be much more in-depth and easily accessible information on the TNA website than I remember. As someone who is not always comfortable with computers and the internet, I appreciate the care that has been taken to make the site-user friendly. Warm regards, L. L. A., patient I had suffered for 11 years with TN, but in May of 2007 I under went Microvascular Decompression [MVD]. As of May 18th. I have been pain free; Praise God!
My pain became so intense that I was willing to try the most radical of treatments. I found your website a few years ago when I was first diagnosed with trigeminal neuralgia. Since then, the information that you have provided has been invaluable! After three years of research and different techniques of pain management, I decided to have the MVD surgery. I am eight days into recovery after the surgery and doing very well. I am writing this note to tell you that you can count on my support each year. Lisa, Patient Thank You for your site. I want to be a member. M.J.R., Patient Thank you for the work you do with the Association, the support and the book 'StrikingBack' have been a great help to me over the years. Sincerely, M. A. F., Patient Thank you. Your org. has been a great support for me. After 23 years I am finally planning to have the surgery Thanks again. I am planning totell my friends and family to send donations to TNA in lieu of flowers to me in the hospital. Sincerely, P. S., Patient Thank-you so much for your wonderful website. It has really helped me. I am a TNsufferer (very mild and intermittent until recent dental work - hopefully not a trend). Iwould like to start a support group. How do I get started? Your website led me to a support group which led me to a surgeon who did my MVD. Pain free since. God Bless you. L.S., Patient Thank you for all your very helpful information on TN. It was through your organization that I learned what my alternatives in treatment might be. R. M., Patient Thank you so much. Thank you so much for the website. It is a godsend to me. I have Anesthesia Dolorosa, and it's hard to find doctors, let alone support, even in the Bay Area. Your work makes a big difference in my life. I am everlastingly grateful. Best wishes, M. Patient I know you are very busy helping others. Heaven knows their will be a special place for you. You asked me to keep you informed of the progress of my TN. I was confirmed to have trigeminal neuralgia by a doctor here in Phoenix. He did prescribe Tegratol. The pain has gone away. My sister in law has the same TN and is taking the same medication. I have already learned so much from the web site. The only way to Thank Each of You is with this message. I will continue to tell others about the site in hope that they too can find more information to help family members. Kindness is a Blessing. M.N., Patient Thank you for the work you're doing with this organization! Glad to know you're just an e-mail or website away with the great information and support. Very appreciated! J.W., Patient Thanks for the info and newsletter. I appreciate your Association as you all were an information lifesaver for me. Thanks, B. H., Patient I truly appreciate the TNA Newsletter! A tremendous amount of work! I like to keep up with the latest in the efforts towards pain relieffor TNA. Thank you John - these newsletters (TNA Bi-weekly Headline News email messages) are such a blessing! L.F., Patient Thank you for being there when I needed you. (10 yrs no pain). R.L., Patient Thank you for providing me and other TN sufferers with new updates and with the newsletter, which I value very much. I am very grateful. Jill, Patient To Dr. Pat Marshall, TN patient and former member of the TNA Board of Directors. Of all the people that gave me advice during my TN journey, I think yours helped me the most. You told me to get the TN books and read them from cover to cover. You suggested that I read everything that I could about TN and have a ‘plan’ in place, just in case my TN progressed. Well, I took your advice. I read everything I could get my hands on. Over the next months after speaking with you, my TN progressed to a horrible state – I wasn’t functioning/eating/etc. During this time, I continued to read/research TN. I tried every suggestion that made sense. So, I wanted to send you a note to let you know that I have my life back - something I didn’t think was going to be possible without surgery. Thank you for taking the time to help me through this. May God bless and keep you. AK, Patient I want to thank you for the great information on your site. I suffered from this condition since May 2000 and in January of this year I had an MVD surgery which was successful. I have been pan free ever since and do not take any medications. I am very grateful for the information I was able to access from TNA and tell anyone who needs help about you. Keep up the good work. I hope anyone who has this condition will be as lucky as I have been and will get their life back. B.T., Patient
Thanks for information and support the past few years. I just got a computer about 3 years ago and found your website. Thanks again. Painlessly grateful, J.W. I just spoke to a very nice person by the name of Kathy Taylor, that is a volunteer person with your support group. She spoke to me in detail regarding my daughter's Trigeminal neuralgia problem and the upcoming MVD surgery. She explained a lot of things to me that I really never knew, and she explained the help that was out there. This is the first time that we have reached for support and what a wonderful experience. She made all the difference in the world. What a wonderful, nice, caring, person she is. Just wanted to let someone know what a difference she is making.... M. N., Mother of TN patient Thank you for all the great updates & personal snail mail news letters.. I have really learned a lot about TN.. I knew there was a name for that awful feeling even when doctors acted like I was nuts C. H. TN Patient. I am thankful beyond words for the support and for having discovered TNA! J.C., Patient May I take this opportunity to say THANK YOU SO VERY MUCH and to let you know how much you have helped me be in control and how I never feel alone anymore with this debilitating illness. I am so very grateful that I can contact your services at anytime for reassurance and advise, so again I say THANK YOU. A.T., Patient Thank you so much for your quick response. I am extremely impressed and reassured by the wealth of knowledge and resources available on the TNA website. Thanks again and regards, H.P., Patient Thank you for your response, it is much appreciated. It is good to know there is an organization that is so responsive, helpful and professional. K.P., patient Thanks for being there. I had TN for 2.5 excruciating years and got hooked up with some wonderful people who were very supportive. I got an MVD at UCSF over 10 years ago and have been pain free, but I will never forget how one small organization (then small) made all the difference in my morale and education. J.M., patient Many thanks, I appreciate all your efforts, you are a wonderful help. B.T.T., patient Thanks for all your great work. Your informative sight saved my life. Sincerely, L.D., patient I'm forever grateful to you. Sincerely, F.P. This is the first website that we have found that is informative and has actual patients talking about their condition. M.L, parent of patient Just to express my appreciation for the good work that you do to make life better for all of us who suffer from Trigeminal Neuralgia and to make a contribution to help support this work. M.W.L., patient Your brochures help me teach others about TN! Your website helps me maintain some hope; your support keeps me sane. I wanted to let you know that the information arrived and is GREATLY APPRECIATED! Thank you so much for being there and for all the great information. Best regards, K., patient The TNA webpage and "Strike Back" have been incredibly valuable to me as I work my way through this maze. S.S., patient I almost cried when I saw this site because it so closely describes what is going on with me. Thank you so much for what you do!!! God Bless, K.G., patient To all you wonderful workers, I am writing to thank you for all your wonderful support and information sent to me in South Africa. My dear Aunt suffered so and the sad thing was that for a long time doctors and her family thought that she was complaining for nothing. N.R., Aunt of patient I am happy to see that there is an organization for TN. I wasn't aware of it until I was surfing the web for another neuroligical disorder a few days ago. I look forward to visiting the website in the future. M.W., Patient First of all, thanks!!! This is the BEST site ever! N.N., Patient Because of that TNA meeting and that TNA contact and the materials on your website, I was able to get the information I needed, find the courage I needed, and ultimately, to move from pain, despair, hopelessness, imminent forced retirement from my job as community college instructor and (because of personal circumstances) near-destitution, to being pain free, back at work, joyful and grateful beyond words. My life has been restored. I would like to be of service to TNA. Susan Urban does wonderful work from her home area in Western Massachusetts. Thanks for much for your work. L.S. Patient Thank you for the wonderful information and support you have provided throughout our ordeal. G.W., daughter-in-law to a patient Thank you again for all your support, and the support we received at the TNA seminar in San Francisco, if not for that, she would not have had her MVD. As HMO members, we knew we had to push ourselves forward and be assertive about our health needs, but no one ever mentioned the possibility of surgery to us, until we went to the seminar…..So, from this mother's heart, eternal gratitude for rescuing my child from a life of total misery. Thanks again, Mary Glynn, mother of patient THANK YOU FOR BEING THERE FOR ALL OF US. Anonymous I was diagnosed with TN just this month. TNA mailed me an information packet. I feel less alone now. Thank you. K. I. Patient - accompanying her donation. First of all I'd like to compliment you with your beautiful elaborate website. It's really very informative. F.E Patient Thank you so much for all the information you have provided....you have been a real lifeline for us as a family and we will be eternally grateful. Kind regards, E., daughter of Patient We want to extend our deepest appreciation to all of you for your wonderful support this last year. We don't know how we would have managed without your answers, your listening and most of all, your tremendous caring. God Bless all of you and your families. Fondly, Mother and Daughter, Patient I've appreciated the help TNA has offered to me and my mother. M.M., mother of patient I recently had the chance to pass along my copy of the recent TNA ALERT to a friend of a friend who thought he was all alone, never knew anyone else had his problem with TNA - - am getting him connected to our local Support Group. Keep up the good/vital work! D.M. Patient I want to thank-you for all the help and support I have received from this site over the years. Thanks again for all the support I have received over the years. K.C., patient May I commend you on your organization's work and the ease of access to your resources. P.J., Dental Hygenist Thank you very much for the great work that you and the organization are doing to give hope to those suffering from TN. D.P., child of TN patient. THANK YOU, THANK YOU, THANK YOU without this site I would not have found out about the Australian Support Group, I would still be feeling alone. Once again a big Thank You to all who are involved in this site. Your time and dedication is sincerely appreciated. S.E. TN Patient "Unwanted Sparks" Poetry by Eva Soroko I want to thank-you for all the help and support I have received from this site over the years. P.A.T. TN Patient May I commend you on your organization's work and the ease of access to your resources. I have recently met an individual with TN through my work as a dental hygienist. Short of referring her back to her physician, there seemed to be little we could offer her in assistance. She is aware of her diagnosis and is experiencing this disorder as a very young person. I have requested some information sheets through your website. Thank you. P.J. Health Professional Many thanks! I received the TNA 5th National Conference Report, on 6th of May. It is very well presented, and absolutely essential to help choose which video to show to the group, at a meeting. This Report, along with the new Striking Back!, shows just how vibrant the TN scene is nowadays! J.T., TN patient and TNA Support Group Leader After suffering so much, and wanting to make some kind of donation to "something" important, I thought, "Why not to something that has a HUGE impact on my own life?" I know it's not the hugest gift you'll ever get, but every little bit helps. Thank you for your personal touch. I am struggling with other conditions but this is a tough one to live with, and one which I would only wish on Osama Bin Laden, as I always say. S.K., TN patient Thank you for all you do! TNA is quite simply an organization that sets the benchmark. Regards, B.R. TN patient Thank you for all the great work and resources that your organization provides to so many. "just because", TN patient TN Association is doing wonderful job. In India no such good effort has been made yet. Many of the doctors know very little about TN problem. With regards and salutes to your organization. Yours truly, Dr. L. D. T., TN Patient. For more of his story, click here. Thanks for your help in a great time of need!! L.L., TN Patient Thank you for the wonderful information. I will send more money when I can. C.L., TN Patient Enclosed is my annual contribution to TNA. Thank you for your efforts on behalf of TN sufferers and their families. J.F., Mother of TN Patient Just a note to let you know that I had MVD surgery 5 weeks ago and now have no facial pain. The book Striking Back! helped me in making my decision regarding which procedure to use. Enclosed is my contribution. Thank you. W. J., TN Patient Thanks for keeping in touch and for all your support. I will put a cheque in the mail tomorrow. We should not have to be reminded to send a donation. Keep up the good work. Thanks again, M.S., TN Patient. I could never thank you enough for what your organization has meant to me. The information from the internet directed me to get your book Striking Back! and I was able to get the surgery that has relieved the pain! Thank God! I was referred to a doctor at LSU in Shreveport, LA. He is so wonderful. It has now been 9 months and no pain. I highly recommend it to anyone in as much pain as I was. I was taking an extreme amount of Neurontin - 300 mg 4 times a day - and still hurt. The surgery was craniotomy. The recovery was hard but it soon passed and now I am able to get on with my life with much more normalcy. Thank you again. Sincerely, A Survivor! Thank you for the wonderful information. - C. W., TN Patient I just reviewed the site and found it very informative. I've been going through a very difficult time and it's nice to have a place to go to for additional information. K.L., TN Patient I know how much work you all do and I so appreciate that. Thank each and everyone of you. I am so hoping in the next year we can make TNA a household name. G.G., TN Patient Thank you for developing this website. C. B., TN Patient I have long said that diagnosing and treating nerve pain by the description of the pain is misguided and completely ignores the science of how nerves work, how the pain impulse is created and what can go wrong. You folks have been courageous and compassionate in changing TN's viewpoint. Because you are willing to address the problem of damaged cranial nerves head on, many more people will be helped and I believe, progress on causes and cures will be faster. K.B., University Department of Neurology Wow, I think I'm going to cry, I can't believe someone responded so quickly or even at all. Thank you! I wanted to let someone know that this site has been very beneficial to me, thank you. K. A., TN Patient Humor and the support of my family is what keeps me going from day to day. I am not sure I would be here today if it were not for the TNA web site. You gave me hope when I thought there was none. I am working on a motivational speech that tells of my ongoing battle with TN, AD, and GP. Thank you for helping me cope with my newly diagnosed TN!!! M.F., TN Patient Let everyone know that there is hope and to never give up! S. W., spouse of TN Patient Attending the TNA meeting helped immensely, mostly because I got to hear a doctor speak, and got data on how many MVDs he has done, etc - S.S., TN patient Helping others is what I'd like to do. This is such an awful disease, that if I could help and encourage others I would feel I am giving back what God has given me. P.S., Support Group Member Thanks to the Virginia TNA support groups. I would have been a basket case and one lost soul without you all and the support you provide. L.G. TN patient Your website was the first I found to give a good explanation about TGN--thank you. T.J., TN patient Thanks again for your support and maintaining such a wonderful website in support of sufferers of Trigeminal Neuralgia. J.B. TN Patient Just a note to let you know that I had surgery (microvascular decompression) 5 weeks ago and now have no facial pain. The book "Striking Back!" helped me in making my decision regarding which procedure to use. Enclosed is a donation. Thank you, W. J. Hello to All at TNA. The 5th National Conference was an enlightening and wonderful experience. Through that conference I learned of Motor Cortex Stimulation and am scheduled to have the procedure on May of this year. I had no idea there was another option for my neuropathic pain. I am so thankful God guided and encouraged me to go. I shall keep you posted as to how the surgery helps. God Bless all of you in your marvelous work. Thanks again, P.S. I'm enjoying my "Striking Back" boo. It has given me encouragement with my TN. I'm on medication to help control it. Thanks for keeping me informed. God Bless You! I would like to thank the TN Association for all their help & Support Group for hours of information. W. L., TN patient TNA-support.org saved my life quite literally. Without information, I would have been at the mercy of uninformed doctors and unable to get proper treatment. It was your site that helped me get what I needed which in turn lessened my pain and connected me with people I can turn to when I need support. I hope to help others with this awful condition in the future. K. L. D. Keep up the excellent work “fighting the fight” for TN patients! Thank you! And please let me know if/how I can ever help. According to your info, I would say I have trigeminal neuropathic pain, the result of much dental work on the upper jaw. I had constant burning pain with intermittent episodes of the worst pain I have ever felt, and I have given birth twice! I have developed immense respect for those in chronic pain. Take care. Thank you! Your organization has been a lifesaver to me of late, especially the "Striking Back" book, as well as the local support group (Jacksonville). I am cautiously optimistic that my pain is gone for now (or forever) but this was a horrible 7 months, and I would do anything to help anything who suffers. Thanks again. T. W., TN Patient Thank you for the help you are providing. J. M. R., TN Patient I want you to know that I appreciate your efforts in collecting and publishing the very helpful and educational information on Trigeminal Neuralgia. I am always eager to read anything I receive from you. I found the TNA site about two weeks ago and was amazed. I have been having trouble with doctors and neurologists trying to diagnose what is wrong with me. I almost cried when I saw this site because it so closely describes what is going on with me. C.G. Hi There, Thanks for remembering me with a note of thanks and that darling tac pin during Volunteer's Week. It truly means so much to me when folks take their time to say thank you. In this busy world of our sometimes this goes astray. It is certainly my pleasure to have reorganized the support group meetings in my city once again. Being a TN patient I know the need for networking with others with the same affliction. Only someone that suffers facial pain can truly understand. Sincerely, S. S. Thank you for your dedication to those of us suffering from TN. I've gotten more info from the site, than I have from my doctor. S. C. J. Dear Alana: Thank you so very much for calling me. It gave me the courage to be assertive with my doctor. The library had one copy of Striking Back to my amazement. I've read it (think I'm the first one to check it out!) and have ordered a copy from TNA along with a request for info to be sent to my primary care doctor. Also sent a contribution for your good work. So glad TNA exists. I have yet to get in touch with my local Support Group Leader. It's hard for me to phone strangers. I so appreciate your call to me, Alana. All good wishes, G. H. PS: I "devoured" the information you sent and feel very much I'm more in control of TN than it is controlling me! Whew! Thanks for being a source of help and hope! C.G., TN Patient From a TNA supporter: "Received my copy of the new edition of the Striking Back - what a great job and everyone is to be commended on how improved it has become. I am so proud of the Association. Keep up the good work." "Thanks for your packet and help - It was a great help to me. I will send for the book next. Thanks, again. A. W. | |||
