We are patients living with Trigeminal Neuralgia, here for your support.

Southern CAL support

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For those members living in Southern California...find support and resources...and friendship.

Location: regional-group
Members: 10
Latest Activity: May 12

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Comment by Marie on October 8, 2011 at 11:40am: Hello all!
Just waking up with terrible pain. :( Mine is usually worse at night. It all started with dental work two years ago. Have thought this was atypical or neuropathic pain like TGN until recently Neurosurgeon found an extra vein wrapping through the trigeminal nerve. (via more specific MRI) Had gamma knife and believe it has made things worse. So sad today. Am in San Diego. Any recommendations for a neurologist here? I am usually quite positive despite all this. Today the pain is worse than normal and my baby girl (4 months) woke up more than normal last night.

hope you all have a nice weekend

Comment by Julie on July 3, 2011 at 5:53pm: I'm down in the OC, and the doctors are pretty good. Dr. Duma did my gamma knife & made my condition worse. Of course, I'm one of the ones that had a bad result. I want to make a shirt that says: I'm on Medication, What's Your Excuse?
I'm so tired of being exhausted. I hope we all are cured soon.

Comment by Julie on July 3, 2011 at 5:51pm: It's so hard not to put the A/C on without my TN acting up! I'm so hot all of the time, but I can't get my face near cold air. I love Dr. Ali Maki, he is truly a wonderful caring doctor. It seems most of the doctors I see are on the same medications that they give me. They have migraines, & TN as well. It helps, because they understand.

Comment by crystalv on June 29, 2011 at 1:52pm: Wow, sounds like you really have your based covered!

There is a TNA conference in Irvine in September - not sure how much of a hurry you're in, but a lot of great doctors will be there, including a couple that you mentioned below.

http://www.fpa-support.org/2011/04/conference-faculty-irvine-ca-9-2...

Comment by craig on June 29, 2011 at 10:55am: I worried about that too, but when I met him all that went away. He says he's done somewhere over 700 MVDs and that appears to be all he does. I was very skeptical given his age and that's why I scheduled him first. But he thoroughly impressed me.
That said, this is brain surgery and I'm getting more opinions. I have a consult with Dr. Schievink at Cedars in a week or so and maybe one with Dr. Barbaro at UCSF. I'm also working on scheduling one with Dr. Linskey at UCI. Seems I'm making the rounds of the UC Hospitals.
Alksne said he saw my compression from across the room and we went through the MRI together. It was pretty obvious when he pointed it out.

Comment by crystalv on June 29, 2011 at 1:21am: He seems kind of old - I'd worry about shaky hands. How many MVDs has he done? Have you considered going to Cedars-Sinai? (yes, I'm biased) My doctor there is not a neurosurgeon, but he acts as a case manager and is a well known doctor who specializes in facial pain. And he only works with the best - I'm curious who he refers patients to for an MVD. I'll ask him when I see him next week. I'm assuming you had a compression visible on your MRI?

Comment by craig on June 29, 2011 at 12:21am: Crystal - I'm glad your Drs are playing nicely. Not all do.
I had a good consult with Alksne yesterday and I was very impressed. He said I was "an excellent candidate for MVD" which left me with a good feeling in the face ;) of what is obviously very serious surgery. Frankly, I wouldn't expect a surgeon to say anything else. I'm interviewing other surgeons over the Southland over the next few weeks while I continue to ask myself whether I really have the courage to go through with it.

Comment by crystalv on June 28, 2011 at 9:14pm: I live in San Diego and have read about Dr. Alksne. I thought he was retiring, but sounds like I'm wrong. I'd love to hear more about your visit with him.

I currently drive to Los Angeles to see my facial pain specialist, and though he is worth it, it's a long drive, especially when I go every two weeks! I have a Neuro here in San Diego, and he's a good man, but is an "Atypical Facial Pain" sort of guy. BUT he lets my specialist in LA run the show while still acting as my primary doctor, which is cool, because many doctors have too big of an ego to do that.

Comment by Jodi on June 28, 2011 at 8:42pm: Haaaa. We have some witty group members now. Very important to have a strong sense of humor with what we have gone through.

SFers are more than welcome here! My son lives there...at SFSU