horsenround2's Blog

Help me please (Trigeminal Neuralgia)

I have been begging & pleading on here for help & have yet to hear from the doctors. I have sent another email to them for help. Please if you are part of the show & see this... please help me. I am in so much pain. Nothing helps it. The doctors here where I live have done what they could for me & have just given up. Please help me. I can't take the pain much longer. I now understand why it's called the suicide disease. After so much time you just want to die. I am getting more depressed. There has to be something out there that can help or someone who may know what might help. Please message me. I have sent email so please look for it & call me or email me that you can at least find a doctor that can help me. I am willing to fly anywhere to see any doctor that knows this issue & can at least try something that I haven't tried yet. Thank you.

Sharon

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Lee M

Sharon - I just signed up/registered on this site tonight and took a peek around.  Couldn't help but notice your post dealing with Trigeminal Neuralgia.  While I do not suffer from it I still may be able to point you in the right direction.

There is a little-known non-surgical, safe and effective procedure that I'm nearly certain will greatly alieve your Trigeminal Neuralgia.  This procedure is known as "Upper Cervical Care/NUCCA/Atlas Orthogonal" - more specifically, there are only a handful of doctors around the world who perform specialized treatment of the upper neck (upper cervical doctors), a specialty within the chiropractic profession.   (Not sure where you live but there is probably an Upper Cervical Doctor in your area - I can assist you to find one.)

In fact, this procedure was featured on The Doctors I believe late last year.  Here is the link to the episode:
http://www.youtube.com/watch?v=UTz7V7vED-U

Also, better yet here is another link to a gentleman who suffered from Trigeminal Neuralgia for quite some time, but got much relief from Upper Cervical Care:
http://whattimetuesday.com/aboutme.html

By the way, long story short, I have received OUTSTANDING "NUCCA - Upper Cervical Care" for the nearly 2 years after suffering a severe neck injury.  The medical profession as well as traditional Chiropractic was unable to help me.  Whereas NUCCA (National Upper Cervical Chiropractic Assoc.) has been nothing short of a miracle!!

Hope this helps.
Let me know.
Thanks.
Lee

 

 

horsenround2

Thanks for the info but alas this will not help. I have been to chiropractor & he has realigned my spine but that's not the problem. My nerve that is damaged is in the front of my head. I have Atypical Trigeminal Neuropathy. My nerve is actually damaged by a vein that crimped & punctured through making a hole there. I have seen the top Neurosurgeon in Oregon, Dr. Kim Burchiel who actually found the problem. Unfortunately my insurance wouldn't pay for anything so I had to come back to VA for a microvascular decompression @ UVA. Luckily the surgeon worked under Dr Burchiel. But when I came out of the surgery, he said that it was the worst he'd seen & that I would be in pain forever. I wanted to die right then & there. My chiropractor Dr. Haas has been the best in trying everything to help me & I am completely aligned which even he said that it had nothing to do w/ the pain that i have. It's hopeless. I am getting to the point that maybe being doped up all the time is my life now. I have exhausted all help here in VA. I don't really have the money to go anywhere but if there was a good chance of pain free procedure somewhere I would get a loan just to go there & try it. Thanks for giving me the info & caring. It's nice to know that there are sill people that care for strangers out there.

johnsend

Hi, my name is DanYell.  I am sorry to hear that you are suffering from trigeminal neuralgia.  My Grandmother has been suffering from trigeminal neuralgia for over ten years. She had a procedure called a balloon rhizotomy last December which relieved her pain for approx. 8 months.  From my own research I had learned that the procedure could relieve the pain for 0-2 years.  She had it done at Cedar Sinai in Los Angeles CA by a Dr. Ajay Ananda, a neurosurgeon.  He now works at Kaiser, I think in Fontana CA.  She has tried numerous narcotic pain medications which helped her to sleep a little but didn't relieve her pain, Neurontin no help, Trileptal helped BEFORE the procedure but caused extreme headaches, Lyrica helped a little but not completely and it is expensive, currently trying Tegrotol which is not helping, accupunture, Lidocaine patches, lidocaine mouthwash, and Hurricaine.  Nothing has been a cure.  Last year she was down to 84 pounds, I could see every bone in her body, after the procedure she gained about 20 but since the pains has returned she has gone back down to 92-94.  I did find the Cedar's website informative about the procedure as well as some of the available treatments.  I will be calling her current doctor to see what we can do to help her as soon as possible trying out different medications is no longer the answer for her.  Please keep me informed as to how you are doing and feel free to ask any question you might have.  Good Luck! 

rhocharl

Hi Sharon,

I recently saw your post and decided to respond as soon as my grandson was quiet. I was diagnosed with Trigeminal Neuralgia in July 2004 shorlty after experiencing the classic electrical shooting pains in my jawline.  Currently I take Trileptal with Neuronin to help with the pain. Thank God I was able to retire in 2005 because I could not continue working in my profession because it required constantly talking with employees.  And talking is one of the activities that triggers this horrible pain.  I have not gone through any surgery because I am so afraid of enduring brain surgery and I know people who still have pain after surgery. 

Maybe this will help you.  Here is the title of a book I received as a gift from my sister. It has been a true blessing containing a wealth of info, Striking Back!  The Trigeminal Neuralgia Handbook by George Weigel and Kenneth Casey.  Another book is Insights - Facts and Stories behind Trigeminal Neuralgia. Both books were published by the Trigeminal Neuralgia Association.  Have you contacted them yet?  Their website is  www.tna-support.org  I attended one of their conferences in Richmond, VA about 2 1/2  years ago.  There I met several specialists and staff people of the organization.  One of the local residents I met, Judi is quite a blessing to me.  We still remain in contact. She produces a newsletter and website.  Her website is  www.comfortandencourage.com  her e-mail address is comfortandencourage@gmail.com 

Sharon, you are not alone. Today is a good day for me and I pray that it is a good day for you too.

Rhodia

 

 

maryhaupt
Hi Sharon, In 2009 I was experiencing strong pain in my jaw on the right side of my face. I went to the dentist had a root canal which did not help Had an MRI, no brain tumor then my Orlando doctor sent me to Dr. Peter Jannetta at Alleghney hospital in Pittsburgh, Pa. He is a brilliant doctor, has been doing this surgery for many years and is a wonderful person. He gave me my life back and he can do the same for you. People come from all over the country for Dr. jannetta. He can help! He did my surgery in February 2010. I have been pain free since I woke up from the surgery Thanks to Dr. Jannetta.
day2day

Hello to my fellow trigeminal neuralgia friends. I, too, have had atypical trigeminal neuralgia for the past 15 years. I have tried all the common medications, and am now on a coctail of pain medications that keep my pain level around a "6" on the pain scale all the time. Those of us with atypical unfortunately have pain more often continuously, I believe, than those with typical. In any case, there is a wonderful organization that offers lots of support and information. They are the: TNA, Facial pain association and thier web site is: www.fpa-support.org.

Best of luck to all of you, and please do not hesitate to contact me here if you have further questions.

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