When I consider the amount of young people contributing to this site, i think your right Red. I am full of admiration of how they manage to cope. How I pray that the big pharmac's would take up this plight.
I just read your post and "YES" TN is very hereditary. There are a total of 7 in my Mother's side of the family who suffer with TN. The first that we do know of was my Grandmother. She had TN on the right side of her face many years ago when, at that time, there was only one medication known to her that could help. She was in her late 70s when she developed TN though. She did not live long after developing TN. Then my cousin when he was in his late twenty's, he almost died before finding a Dr. in Dallas,TX that did the rhyzotomy procedure where the nerve is destroyed. It saved his life and about two years later, his Mother, my Aunt, developed TN on the same side of her face. She had the procedure done and within the year my oldest Brother developed TN on the same side and he had an unsuccessful MVD then two rhyztomy procedures and found relief only to have TN come on the other side as well. My oldest sister developed TN about 10 years later and now has ATN. Now myself , which makes a total of 7 of us , and I had MVD surgery done back in Aug. of 2010, I found relief only to have it come now on the left side of my face. Oddly though, only my Mother's 3 children have it on both sides and my Mother lived to be 81 years old and she never had TN. And yes, we were just told before Christmas that my cousin who developed TN in his early twenty's had a daughter in her late 30s who has TN now, so , there are 8 of us now. In our family history TN is very hereditary. I fear for my girls and my grand children. My neurosurgeon said he had never heard of such a strong family history. He seemed to think it had something to do with the formation of blood vessels and the shape of the skull, but, it is very rare for so many to have it but! it does happen.
Linda, I'd like to make a suggestion, if I may. Please consider registering with the US Trigeminal Neuralgia Association, and offering your family history to the site management for posting to their Knowledge Base. The website is http://www.fpa-support.org.
Regards and best,
Red
I will do that, I haven't thought about posting there. I have given this information to the Texas TN association.
Thanks,I will do that now
Linda
I will pray for you Linda and your family, God bless you all.
Linda Kindle said:
I just read your post and "YES" TN is very hereditary. There are a total of 7 in my Mother's side of the family who suffer with TN. The first that we do know of was my Grandmother. She had TN on the right side of her face many years ago when, at that time, there was only one medication known to her that could help. She was in her late 70s when she developed TN though. She did not live long after developing TN. Then my cousin when he was in his late twenty's, he almost died before finding a Dr. in Dallas,TX that did the rhyzotomy procedure where the nerve is destroyed. It saved his life and about two years later, his Mother, my Aunt, developed TN on the same side of her face. She had the procedure done and within the year my oldest Brother developed TN on the same side and he had an unsuccessful MVD then two rhyztomy procedures and found relief only to have TN come on the other side as well. My oldest sister developed TN about 10 years later and now has ATN. Now myself , which makes a total of 7 of us , and I had MVD surgery done back in Aug. of 2010, I found relief only to have it come now on the left side of my face. Oddly though, only my Mother's 3 children have it on both sides and my Mother lived to be 81 years old and she never had TN. And yes, we were just told before Christmas that my cousin who developed TN in his early twenty's had a daughter in her late 30s who has TN now, so , there are 8 of us now. In our family history TN is very hereditary. I fear for my girls and my grand children. My neurosurgeon said he had never heard of such a strong family history. He seemed to think it had something to do with the formation of blood vessels and the shape of the skull, but, it is very rare for so many to have it but! it does happen.
Linda, you live in Texas? Do you have a recommendation for a doctor? I live in West Texas...and if I asked you this already or we already talked about it, just humor me. When I am in the middle of a bad flare up, I don't remember much. Lori
Linda Kindle said:
I will do that, I haven't thought about posting there. I have given this information to the Texas TN association.
Thanks,I will do that now
Linda
Hi, Lori
Yes, I am a Texas girl to. I live in North East Texas. Close to Canton. I do have a neurosurgeon I would highly recommend. His name is Dr. Richard Weiner. He is with the Dallas Neurosurgical & Spine Association. I seen him at the big Dallas Presbyterien Hospital but I think he also goes to about 4 other locations near by as well. He was Chief of Neurosurgery twice there. I had found and heard good things about him and also Dr. Whitworth at UT Southwestern Medical Center in Dallas. My primary care Dr. made me an appointment first with Dr. Weiner and I went and seen him and really felt so comfortable in everything he told me and what he had to say, I felt confident so, without seeing Dr. Whitworth I had MVD surgery two weeks later and I did just great. I know what you mean about the flare ups. I still take a very, very, small amount of medication for twinges, and now I have them on the other side as well. But I have not had one horrible pain since surgery. I feel like I got my life back. If I can help, answer any of your questions just let me know.
Linda
booklass said:
Linda, you live in Texas? Do you have a recommendation for a doctor? I live in West Texas...and if I asked you this already or we already talked about it, just humor me. When I am in the middle of a bad flare up, I don't remember much. Lori
Linda Kindle said:I will do that, I haven't thought about posting there. I have given this information to the Texas TN association.
Thanks,I will do that now
Linda