I am a new member of this group, although sadly, not new to TN pain. I have had this pain for many, many years and have just recently been told by a dentist who specializes in facial pain that it is probably ATN. Everyone prior to that had diagnosed me with dental problems (I have had many, many root canals and 3 molars extracted) and TMJD. The dentist has me doing things like wearing a dlexible splint with benzocaine gel and he tried having me add capsaicin to that, and it's not helping. He seems to be pretty slow and methodical and conservative in his treatment.
So...what to do now? I am assuming that I need to find a neurologist but I don't even know where to start. I am so, so tired of being in pain and so overwhelmed and I need someone who is going to respond to what I say is going on. The thought of seeing a doctor who is dismissive and/or unsympathetic is so overwhelming and potentially disastrous to me that I feel stuck. I can't risk seeing one more person who tells me that they don't know what to do or that they can't find a reason for my pain. I don't think that emotionally I would recover from that.
I guess that sounds dramatic but I'm kind of at a crossroads here. This pain has changed my life for the worse in so many ways, and it is near-constant now. It affects my work, my marriage, and my parenting. It affects everything, as chronic pain always does. I was taking so many Advil and Aleve to try to help with it that I've basically eaten away the lining of my stomach.
If anyone has any ideas where I should or could start, any recommendations of someone in Boston or the surrounding area that treats people well and respectfully, I'd be grateful.
I am also new to this group and live in Boston. My 80 year old mother has had ATN for 3 years and is meeting with Dr. Eskander at MGH to consider RF rhizotomy. I was wondering if any one could share their thoughts on the procedure, side effects and Dr. Eskander. Thanks
I don’t have any experience with that procedure, but I have done quite a bit of research on providers since my last post. I hear amazing things about Dr. Eskander and am thinking of trying to get an appointment with him. Did it take a long time before she was able to get in to see him? We have some top-notch medical care in Boston, but it always takes months to get in to see anyone!
I e-mailed Dr. Eskander on a Monday and he personally replied and we saw him the following Monday. My mom was supposed to have the procedure yesterday but had second thoughts. She has another appointment soon to go over her concerns with him in a couple of weeks. She is very afraid that the possible numbness will be harder to deal with than the pain. So far we have found him to be quite accessable. I have also read that he is tops in his field. After reading others posts, I have come to the conclusion that you want a neurosurgeon that has a lot of experience with performing the RF rhizotomy.
Wow, that is amazing. I think I will email him, too!
If she has ATN, I wonder what the prognosis/percentages she was given for success were. I am pretty new to any research into TN---I've had this pain for about 7 years, but have never known until a few months ago what it was!
Dr. Eskander said he believed she would have a good prognosis, but to expect some numbness for awhile after the surgery. He said that he has performed this surgery many times. He did not quote a success rate, but he did seem confident that she would have a better quality of life if she goes ahead with the rf rhizotomy.
We meet with him again in couple of weeks just so she can ask a few more questions and calm her fears.
Good luck!
Hi Boston, i was diagnosed with TN about 2 years ago. The dentist had already done 1 root canal and that is when I felt the sensation at the back of my mouth where he actually hit the nerve. Like you I was taking lots of over the counter meds until I went to the neuro. He told me what i had exactly 2 minutes after I told him my symptoms. Don't lose heart there is something out there for you. I took the meds prescribed and have only gone up and down with them pertaining to the weather and amount of stress i am under. I have a very good friend who was having trouble with nerves but in her legs because of her diabetes, I think she called it nueropthay ? She told me she had been taking these vitamins call Nerve Support. Being desperate as we all are sometimes I went for it. It actually worked as it started to heal my nerve, the pain was less and less...just taking the pills would take the edge off so i could function. It was a miracle and i took it for 2 years. Please look it up on the internet, you will not be disappointed. Anything to help the pain was something i was willing to do. Now I am in the process of having surgery on the 6th of jan, and hopefully be done with it all together. I do pray that you would feel some relief. My heart goes out to everyone here on this blog because i can honestly say I have walked in your shoes. Godspeed and hang in there. In Jesus name...,,