I have been dealing with TN for 9 years. First couple of years medicine helped where I eventually stopped all medicine. 4 years ago it came back. My Neurologist in Winston Salem, Dr Hill, tried several different types of medicine. Side of effects terrible. Then I started with lamitcal. My best friend, I had relief for 2 years. Gradually came back. He tried botax, did not help. He referred me to Pain Management Dr, Nerve block & 2 radiofrequency lesions within 9 mos, did not help at all. Last visit a week ago added bicloflen along with lamitcal. Not much improvement if any. I go back in 3 weeks and I am going to ask to be referred on for MVD. I am 44 years old and what I have read MVD has 95% success rate and relief up to 10-15 yrs, shoot I would be happy for 5 yrs.
Does anyone know of a Neurosurgeon specialized in TM in my area? That would include Raleigh, Charlotte, Greensboro, & Winston Salem.
Or am I jumping to fast to request MVD?
I had gamma knife at Wake Forest in Winston-Salem Thursday. I have the best neurosurgeon, Dr. Stephen Tatter. He has a good reputation. He suggested I have MVD. I am just so scared of that surgery. I had a brain stem stroke years ago and I am afraid of the surgery. As well as being so knowledgeable, he has a wonderful bedside manner. Please try to see him. I live near Winston. I would love to correspond with you. I don't know anyone afflicted with this disease. I take gabapentin and trileptal. Hoping to get off of these meds soon. Also I have Vicodin for pain.
Thank you! I live in kville. I will definitely inquire on Dr Tatter. Baptist is very good hospital. How did the gamma knife go? I have read best to do MVD before gamma knife. PA assist at Carolina Pain Management mentioned doing gamma knife.
This is my second gamma knife. The first one helped my eye and nose, but the tooth ache , ear ache, etc. persisted. I think this one had a higher dose of radiation. It takes time to see if it works. I feel very tired. I have some swelling near my eye and temple. I woke up with a terrible headache. Trying not to take pain pill. I expect side effects. I am 57. I have continuous pain - Type II - it is driving me crazy. I am surprised you have not been offered mvd earlier. You are so young - I feel so sorry for you. I don't know your situation, but if you are otherwise healthy, go for the mvd. Just think, you could be pain free for a long time, off all medication, living life to the fullest. Dr. Tatter has done thousands. (I think that's correct.) Have you had a MRI that shows a compression? Even if the MRI does not show a compression, you still may have an artery pressing on a nerve. If you are offered Gamma Knife, the procedure is easy. The worst part is placing the helmet on the head. The shots to numb the area hurt. But then you don't feel a thing except uncomfortable pressure. Please get help so you can enjoy your precious young life.
I had a MRI done 7-8 -years ago and my neurologist, at that time, commented I did not have MS.
Overall I am in good health, besides needing to lose some pounds.
Run to a different Dr. Just because you don't have MS doesn't mean you don't have TN. I know you have a good neurologist (Dr. Hill), I went to High School with him. Sometimes a patient needs a new perspective. A good neurosurgeon will give you peace of mind. A good neurologist should not mind referring you to one. In fact, after medicine fails, a neurosurgeon is usually recommended before pain clinics. Do you have good insurance? What kind of pain do you have? I bet a neurosurgeon will order another MRI. Please get help. Wishing you less pain.
I have been thinking. I am no Dr. Why did I suggest you need a mvd. I would suggest you see a neurosurgeon to see what he recommends. I have suffered so much. I have felt like my life is over as I once knew. I just wanted to help someone. Good luck
Thank you ‘sunshine’ for kind words. Agree Dr Hill is a great doctor. Such a sweet and kind man. Caring, I can go on about him. Dr Hill is my 2nd numerologist, first one was in Greensboro. He did the MRI and said I did not have ms. At that time TN was new to me and I did not understand what TN was. Yes I have insurance. The pain radiates from the side of my tongue, bottom teeth, and up to the ear. Plus my face is sensitive to touch around the lips and hair line around the temple. Touching the temple the pain shoots down to my lips. This is on good days. 3 weeks ago for several days I had intense spasms in my jaw. Each spasm would last from 15 to 30 seconds. The best way to describe the pain with the spasms is like having a root cannel with out nova-cane. I did not dare to move. Mornings are the worse.
Hi sunshine. My pain management dr referred me onto Dr Tatter today. How long did it take before you had your 1st appointment? Pain Dr is suggesting gamma knife, but I am not sure I want gamma. I guess I will wait and see.