I am over here going doctor to doctor and no one has a clue about GPN, my neurologist that diagnosed me was wonderful, but even she said this is not her area of expertise. I see on the boards that Dr. McLaughlin on the East coast is a favorite, but I can’t afford to get there right now and manage my 3 small children for that length I would have to be gone. Any advice is so appreciated, this pain is making my life unbearable.
Jill....not sure where you are located but here in LA, both the USC and UCLA Medical Centers have neurology and neurosurgery departments that have physicians on board that are familiar with GPN. I could give you more detailed information if you wish.
@MSov…yes please if you have had a good experience that would be most helpful…thank you so much for responding 
I believe my level of care has been pretty good, not perfect. The reason I say not perfect is because I actually had a surgery last year for microvascular decompression but it did not cure the GPN, I still have the pain. The surgery went well but I knew going in there was no guarantee it would work. Otherwise I have been happy with my neurologist, seems concerned, we keep trying different meds to relieve the pain, and I was referred to some pain management specialists at the same facility who are helping me cope with the pain a bit better using different techniques. But everything must start with the neurologist. Her name is Dr. Soma Sahai and phone number for appointments and such is 323.442.5710. If I recall, it takes awhile to get your first appointment but once you are a patient, things happen much quicker.
Meanwhile, at UCLA, I am seeing a neurosurgeon about proceeding with a focused radiation procedure which they use much more for cancer treatment but have had some success with nerve pain. I have been told it is about 50/50 that I will have significant pain relief but to me it is a chance worth taking since my pain is chronic and debilitating. The neurosurgeon is Dr. Antonio DeSalles with a phone number of 310.794.1221. I seemed to get in their system a bit sooner than at USC.
Anyway, I hope this information helps. GPN is insidious in not only the pain but in competent physicians who have experience with it since the disorder is so rare. Let me know if you have any further questions.
@MSov..... thank you so much for the info...I have it all written down.....keep us posted on the radiation procedure you will be going through...I am so sorry that you are suffering so much....this is the most bizarre thing to deal with....half the day I can be smiling like nothings wrong....but on the inside I can feel the pain starting to ramp up like a monster lurking on the side of my head, by the nighttime I am cradling my head trying to stay focused.....someone said yoga seems to help....I have never been the yoga type....but may give it a go to try anything at this point.... Thanks again....we can get through this right? Stay strong!!
thanks for the encouragement...you too, keep us posted on your adventure, trying to at least get some relief from this beast.
Regards, Mike Sovich
Hi Jill. You might want to check out the House Ear Clinic in LA. I had a consultation with Dr. Marc Schwartz about two years ago. They mostly do TN surgeries and some GPN surgeries (MVD). But they sure were knowledgable and compassionate. They might be a good resource for you.
Thanks so much for the advice Nikki!!! I really appreciate it!!
Nikki...did you undergo any type of procedure at the House Clinic that were beneficial to you?
Hi MSov. No procedures. Dr Schwartz thought that because I’ve had the condition for so long I have more of neuropathy going on than pure neuralgia and I wouldn’t get great results from MVD. I was misdiagonosed for YEARS with everything in the book before GN was deemed the culprit. And the docs at House Ear Clinic are in that part of the brain every day, so my trust level is high with them.
Dr. John Alksne at UCSanDiego diagnosed me. He’s excellent and GPN is one of his specialties. Took me four months to get in to see a neurosurgeon in Salt Lake City but it only took two weeks to get in to see Dr. Alksne. He spent almost two hours reviewing my case with my husband and I. I am a good candidate for MVD and he said when I can’t stand it anymore to give him a call and he’ll get me in for MVD quickly. For now I am trying upper cervical chiropractic which appears to be working as my pain is greatly decreased.
Dr. Linskey at UC Irvine has GPN listed as a specialty and has good reviews also.
@Sherie,
I am going to make an appointment with Dr. Alksne, how many days did you need to be in San Diego for his appointments? Did he schedule an MRI for you there? It’s a 5 hour drive for me, and I want to make sure I am prepared for what they will need to do. How are your chiro appointments going, still helping? My pain level has shot through the roof, I am starting to feel desperate for someone to help me . Thanks Sherie, I appreciate your advice so much,
Jill
I already had MRI’s so I just did a consultation. They can do same day MRIs if you need one. Folks that fly in usually do MRI on day 1, consultation on day 2, surgery on day 3. My pain is totally gone with UCC. No zombie drugs needed at all, and no active trigger points! Send me a message if you want more detailed info about scheduling your appt…there are a few details you’ll need to attend to. Best wishes. Sherie
Jill, were you able to get in to see Dr. Alksne?
Not yet Sherie, thanks for asking. I have to wait till my husband and kids schedules come together. Suffer a bit longer
I too have seen Dr. Alksne and he did my MVD procedure this past January. He has to be one of the most amazing doctors I have ever met. Incredibly knowledgeable with a bedside manner that makes you wish he was your dad or grandfather. I realize I'm a month late on this post...but I would highly recommend him.
Sherie said:
Dr. John Alksne at UCSanDiego diagnosed me. He's excellent and GPN is one of his specialties. Took me four months to get in to see a neurosurgeon in Salt Lake City but it only took two weeks to get in to see Dr. Alksne. He spent almost two hours reviewing my case with my husband and I. I am a good candidate for MVD and he said when I can't stand it anymore to give him a call and he'll get me in for MVD quickly. For now I am trying upper cervical chiropractic which appears to be working as my pain is greatly decreased.
Dr. Linskey at UC Irvine has GPN listed as a specialty and has good reviews also.