Went to the neuro today and since my MRI shows that the blood vessel is just above and "not really touching" the nerve, he is questioning whether I have TN or just some sort of dental pain...jeez, I have already been down that long, frustrating road. Nothing is wrong with my teeth, I even had an unnecessary root canal for this. So, now he wants me to go to Cleveland Clinic so they can evaluate me and if needed, they can have an endodontist see me there. I am okay with going to there but not for an endodontist. Seriously, there are three huge problems with this disorder...1. the pain is unbelievably bad, 2. the medicines make you into another person-head in a fog type of way, 3. the medical professionals just don't get it. That is so ironic because these guys should know and understand nerves and nerve pain and the variances that can go along with any nerve pain condition. If it weren't for this site, I would feel terribly alone and that no one in the world understands this issue.
Aw, so sorry you're going through this and had such a disappointing appoint. I have MS and TN and I can vouch for the fact that neuro. visits are often extremely disappointing and frustrating!
Praying you get validation and help for your TN symptoms,
Vicki
OOh my goodness.... Time for another doctor I think.. :( Unfortunately.
I would agree with Min that you seem to need a different neurologist. The one you have apparently doesn't understand that many cases of neuropathic trigeminal pain and typical trigeminal neuralgia cannot be traced directly to a nerve compression. As a starting point, please check the doctor recommendations subtab of our menu above.
Regards, Red
Ok, will do. Also, he told me to taking the gabapentin and tegretol since they don't help much. I always knew neurologists in general had bad bedside manors but this is downright ignorance on his part. I am very grateful for this site and my husband is very supportive. I guess I will go to Cleveland and see what they can offer me. In the meantime, I have to find another doctor to give me the meds I mentioned above.
Richard A. "Red" Lawhern said:
I would agree with Min that you seem to need a different neurologist. The one you have apparently doesn't understand that many cases of neuropathic trigeminal pain and typical trigeminal neuralgia cannot be traced directly to a nerve compression. As a starting point, please check the doctor recommendations subtab of our menu above.
Regards, Red
Thanks, I am trying to develop a sense of humor regarding this. I hope you have a good and supportive neurologist. MS and TN sounds like a lot to deal with, I kind of feel bad complaining now. I will keep you in my thoughts and prayers.
Jody
Vicki Dvorak said:
Aw, so sorry you're going through this and had such a disappointing appoint. I have MS and TN and I can vouch for the fact that neuro. visits are often extremely disappointing and frustrating!
Praying you get validation and help for your TN symptoms,
Vicki
Min.
you got that right.
Min said:
OOh my goodness.... Time for another doctor I think.. :( Unfortunately.
Ooooop, you are writing my story. I went from one doctor to another in the beginning, had an unnecessary root canal done. My MRI was ok then. Now , it shows that I have a compressed nerve, and this is 7 years later. The doctor I am currently seeing is great , so I hope you meet the right doctor .
Regards.
Seow,
On your first MRI, was the vessel close to the nerve but not touching it? Have you had MVD or any intervention?
I will find the right doctor, I am feeling empowered thanks to this site.
Hi, my first MRI shows that the vessel, rather the artery, was close to the nerve. I did not have MVD nor any other non invasive surgery. I am scared. I went through a lot of experiments with different combination of medicines and ended up with something that put my pain under control. It is a long and painful process, but worth it. If the medicines can stop the pain, you have a greater chance of going into remission , that’s what I believe.
Oh, the artery is close to the nerve in my case as well. I really don't like taking the meds, they are not that helpful and my level of pain is still enough to make me want something done-I am willing to try the rhizotomies and/or anything else in which the benefits of the procedure outweigh the risks and complications.
Thank you for sharing your experience.
Jody
“amen” to jwpookie
“if it weren’t for this group I would feel terribly alone…”
Did you go to Cleveland Clinic yet? My sister-in-law is a nurse there and I could ask her about a neurologist or pain specialist for you?
where’s the “unlike” button?? 
when my neuro diagnosed me with TN, he prescribed meds ...after 3 long years of suffering and not wanting to take anymore meds i sought out a neuro surgeon at Baylor medical collegel. he diagnosed me and i had the mvd surgery. i would do it again in a heart beat...why did i wait so long? I don't know, maybe it wasn't God's timing...but i had it done Jan 6, and I feel great. I still take 200 mg of carbotrol daily but i was taking 1000 mg before....i take right before bed and doesn't interfere with my job and life. I am so happy....
that is great news indeed bet6252. may I ask who you saw at Baylor?
Dr Aswin Viswanathan, phone #713-■■■■■■■■, he is a specialist in TN...check out the Baylor website. God bless....and keep me informed.
thanks very much! will definitely check it out.