If you are considering other medical centers, you might investigate the members of the Medical Advisory Board of the Facial Pain Association. Kim Burcheil, one of those physicians, practices in Oregon, just south of you. His contact data are as follows:
Kim J. Burchiel, MD
Professor of Neurological Surgery
Oregon Health & Science University
Portland, OR
Thanks a lot, Red. The OHSU diagnostic tool is one of the first things we found when it became clear this wasn’t just an earache, and led us to start to investigate TN/GN as a possible diagnosis. We will definitely follow up there; Isaac loves Portland, so may not even complain too much about being dragged to see yet “another doctor” there. 
We continue to hold surgery at a pretty far distance in our heads, but then again, no one’s suggesting cutting his head open yet since no one’s made a definitive diagnosis. Still, it’s hard to know how or when to navigate between the neuros and the surgeons as we try and figure this out.
Thanks again for the recommendation.
Had several hours in hospital with Megan today. Short general anaesthetic while they put some local in her ear and had a better look at evrything. Sadly still no change in pain level . ENT consultant is going to ask for advice from others but I don’t know if he will get anywhere. Do any clinicians know of any one likely to be able to help in the UK? How long do we go on getting nowhere. Thank you for your support.
Joanna Zakrzewska is a member of the TN Association Board. She works as a clinician consultant. The following are her contact data:
Professor Joanna M. Zakrzewska MD, FDSRCS, FFDRCSI, FFPMRCA
Consultant
Orofacial pain unit
Division of Diagnostic, Surgical and Medical Sciences
Eastman Dental Hospital
UCLH NHS Foundation Trust
256 Grays Inn Road
London WC1X 8LD
Tel + 44 (0) 20 7915 1195, secretary 7915 1053/ 2314
Fax +44 (0) 20 7915 1105
Email: ■■■■■■■■■■■■■■■■■■■
Joanna impresses some people as sometimes insensitive to patient distress or emotions. However, she is very deeply grounded in the field and has many well respected publications.
I hope this is helpful.
Regards, Red
Hi Steve - just wondering how your son is progressing. Have you got any further with a diagnosis or improvement in symptoms. I have been trying to find out more about the geniculate neuralgia as that seems the closest match to my daughter’s symptoms . The main difference seems to be that if it were gn then the pain would not be constant. I have read various papers saying that the pain comes intermittently although can be very often. Megan insists that her pain never goes away. We are becoming increasingly desparate about getting a diagnosis and therefore treatment especially if you have difficulty despite that vast amount of expertise in the US compared to the UK. We have an appointment with a paediatric neurologist in August - our healthcare system is incredibly slow if your condition is non-urgent (in their eyes!) best regards Barbara
Barbara said:
Had several hours in hospital with Megan today. Short general anaesthetic while they put some local in her ear and had a better look at evrything. Sadly still no change in pain level . ENT consultant is going to ask for advice from others but I don't know if he will get anywhere. Do any clinicians know of any one likely to be able to help in the UK? How long do we go on getting nowhere. Thank you for your support.
With pain of the sort Megan has, I have heard and read from multiple sources that one of the diagnostic techniques that many US neurologists use would be to try her on a short course of Carbamazepine or Oxcarbazepine, tapering up from an initially low dose to a higher dose over a period of three to four weeks. If the pain is constant, an alternative would be to taper her up on one of the tricyclic antidepressant meds such as Amitriptyline. If neither of those works alone, then they might be combined or another med added such as Baclofen or Lyrica.
The point of the exercise is that in the US, face pain patients don't always have to have a definitive diagnostic label before medication is tried. Positive response to medication can be a confirming factor in the diagnosis. This may be worth discussing with the Consultant who is overseeing Megan's case.
Go in Peace and Power
Red
Hi Steve - just wondering how Isaac was doing. We saw a paediatric neurologist today and have been given tegretol and told she will just have to cope if that doesn’t work. We are getting a bit desparate as the doctors expect her to go back to school and she feels that is impossible. Kind regards Barbara
Steve Alter said:
Hi Barbara,
I've been thinking about you, wondering how your daughter is doing and what you've been able to find out, if anything. Please feel free to contact me directly if you'd like compare notes or just talk to someone who is in the same place and trying to find care for their child.
Steve
I echo Barbara's interest. How is your daughter doing -- and how are YOU doing, for that matter. Parents in your situation deal with a horrid amount of stress.
Go in Peace and Power
Red
Hi Barbara,
Are they not prepared to try any other drugs besides Tegretol? Is she also on Gabapentin in conjunction with it? Isaac is now just starting Lyrica (in combination with Gaba) after getting no relief from Trileptal. But they will probably try one of the other drugs Red mentions (probably Amitriptylyne) if he still has no relief.
We too are dreading the start of school, though I would describe Isaac as being in a state of equilibrium right now. He did have to leave sleepaway camp after just one week because he couldn’t manage the pain, largely due to fatigue, which seems to be the biggest factor in his ability to manage the pain; he had a sleepover with friends a few weeks ago, and the next three days were a nightmare. Even though he still doesn’t sleep very well - in spite of being on drugs that make him drowsy - if we keep him on a steady schedule, without too many spikes in activity, he’s better able to cope. What that means when he has to start waking up at 6:30 AM and be at least semi-focused for 8 hours a day, I don’t know. 
We did have a consult with Dr. Carson’s team at Johns Hopkins, but they could not come up with a more conclusive diagnosis and recommended against any surgical intervention at this time.
He’s still doing acupuncture, which seems to at least relax him, if not address the pain specifically, as well as biofeedback. Have you talked to any pain management doctors? I feel like while we still continue to find a remedy with the neurologist, that there’s a parallel path for pain management that can provide some comfort while not necessarily impacting the underlying symptoms.
I will keep my fingers crossed that the Tegretol will give Megan some relief!
Steve
Ali, you can have GN without the stabbing ice-pick pain, although just like TN, surgeons really want to see the electric-shock like or ice-pick ear pain before doing anything or see something on MRI. I also have ear pain and I would describe it as deep aching with pressure and fullness with stabbing pain infrequent but happens when chewing or just brushing the sides of my ears sleeping..can not sleep on my side. ENT ruled out ear infection and other causes for pressure, now I am being referred to an otolarngolgist or otoneurology, a surgeon as knowledgeable as a neurosurgeon that does TN MVD and treats GN with MVD. Another symptom I have is a very bitter taste, it is mouth pain at the roof of my mouth and tongue and gets very strong...radiates to my face. This I have seen as another symptom of GN, rare, but does occur. When all of this started the first symptoms I had were ear pressure and fullness, some mild earache left ear and bitter taste. I too thought I had gotten water in my ear as I swim for exercise, got ear plugs but nope, within 6 months the right ear started to get the same feeling and then the ear pain came on strong...like a slap on the side of head with some stabbing pain chewing, my stabbing pain is not ice-pick in nature, more like pulsating aches that will stop me in the middle of eating. I have one finding on MRI that the ENT believes is causing this...something aberrant anterior-inferior cerebellar artery but only showing on the left side...there is a more specific MRI the ENT believes can be done at that level. Also, chronic neck and shoulder pain started bothering me again, if I don't get anywhere with this new doc, I am seeing another pain doc that may try a SCS, (spinal cord stimulator) for the ear pain and facial pain, this was recommended by a neurosurgeon from this site that saw me. I went back to the ENT, I have some hearing loss, he did want me to see this other surgeon the otor..instead of this neurosurgeon.
I have exhausted all the meds, some effect, then wanes and then side effects are horrible. Still doing botox and PT for my neck and that is improving but not the head and face pain, the PT thinks I have ON.
I have cervical fusions, tmj history-surgery in '86, but ruling out this coming from the neck or tmj. Nerve blocks of the cervical upper levels did not stop the ear pain. I may have to get a moving MRI to rule out a joint problem for tmj. It is not TN or ATN, I do have some atypical facial pain, but correct me Red if I am wrong but the nervus intermedius is another cranial nerve that can cause this...I believe it is the VII or VIII...sometimes this surgeon may see problems not seen on MRI with the V and VI which are the ones that cause TN and TN or ATN can also cause some ear pain.
I know MVD is promising but may not help and it may not even be offered to me. May have to wait for this thing to keep progressing to ice-pick pain. TMJ can cause ear pain, earache but if that joint is involved you get deep screwdriver constant ear pain. Sharon
AliBaby said:
I know I am new to this, but I too am having ear pain, not in an infection sort of way because I have had those before, and I have not been swimming either. Mine also does not include any sharp or stabbing type pain, it's more of a dull aching that comes and goes. Just my 2 cents worth.
Love Ali
Hi all,
I thought my Type II TN went back into remission. The higher dosage of Gabepentin seemed to do the trick. Then the other day, I started having bad tooth pain in a bottom molar on the opposite side of my face. It shoots up into my ear and into my jaw. I thought it was a tooth problem, but I had a root canal on that tooth a number of years ago, and I had the one in front of it pulled a couple of months ago. On a side note, I had a bone graft put in that socket. Anyway, yesterday I touched my scalp on that side and had the "bumped my head" sensation I usually have on the other side. So now I'm wondering if the TN switched sides. Has anyone had this happen?
It's fairly common for either Typical or Atypical TN to switch sides or to become bilateral. About 40% of our members have experienced bilateral TN.
Sorry I couldn't offer you better news,
Go in Peace and Power
Red
Yes, that's what I was afraid of, Red. Thanks for the reply.
Just to add to all of this, I too have a dull aching ear pain on the left side which sometimes explodes to an ice pick being shoved deep inside of it. Sometimes for a few minutes and on really bad days, all day long. Other times the left side of my nose and upper cheek or left eyebrow/forehead. I went to an ent and they did a bunch of tests and when they finished they said the found nothing wrong, but one of them said she thought it might be TN. So off I went to the neuro doc and he did a bunch of test and an MRI and he said, yep, looks like TN. He put me on Gabapentin/Hydrocodone/and forgive my spelling, Ampitryiline. After several months of zombiehood I'm pushing hard for an MVD.
So, after all that, I believe it's all TN even if other nerves might be involved. Just make sure to tell the right doc what's going on and where you hurt so they know what to look for...and on a side note, Happy Day after Turkey Day from Houston Man, defender of truth, justice, and the Houstonian way...bum bum bum