I met with a neurosurgeon today, and he looked at me as though as I was crazy when I told him I had bilateral TN. He told me to come back in three months and let him know I feel.
Has anyone with bilateral TN had any luck with a neurologist or neurosurgeon in the Baltimore or Philadelphia area?
Please help.
I have bilateral as well. I found a terrific neurosurgeon in Trenton, Michigan. His name is Dr. Ken Casey. You can look him up online. I travel from ND to MI to see him. He has saved my life. I started by emailing him my story and he answered back quite fast. Good luck and I hope you can find relief.
He has been giving me lidocaine infusions.
I have bilateral ATN. Although I live in Georgia, I treated to NY to see Dr. Jeffrey Brown. He is a neurosurgeon who is an expert in TN and all its treatments. He did the MVD on both my right and left sides, and I would highly recommend him.
Christine
Hi all - I’m actually kind of new to this site and I went to Dr. Brown for a consultation about two weeks ago (my mom got his name from an oral surgeon). I’ve only experienced the burning pain which starts up in the morning or later in the day and gradually builds up. I’ve had so much dental work in that area (three crowns in a row - last two bottom molars are root canal and premolar has a crown) and it so feels like it’s coming from my teeth/gums that I’m still not totally convinced it’s not a dental issue. although three endodontists and four dentists can’t find any indication of infection, I have had bloodwork which shows super high c reactive protein, which typically indicates infection or inflammation.
Dr Brown did an MRI and noted a compressed nerve with a looped (? Not sure of terminology) artery on both sides. He said that he could perform MVD but that it is not always successful for type II TN. He gave me a script for gabapentin to see how that works first - I’m terrified to take it because of all the horror stories and my mom has had horrible experience with it.
Anyway - sorry for the long novel but most people wont respond via direct message and I would love to speak to someone who had experience with MVD and PNS and/or lidocaine infusiin, and I see that Christine and Katie have done one or he other with success. Dr Brown did not mention either non invasive options, so I’m very curious. Any insight you could provide would be so appreciated. Feeling a bit overwhelmed as I’m about to return back to work from maternity leave and am dealing with this pain.
Many, many thanks
Hello
I was only offered the PNS by Dr. Brown after the MVD on my right side failed to relieve the burning boring pain of TN 2. The nerve on that side had been compressed for close to ten years, which greatly effected the outcome of the procedure. Although the shocks were gone, I was still in pain and medication did not relieve it. The PNS is for pain control, it is not a corrective procedure. I had it implanted in August of 2013, and it works wonderfully well.
The MVD on my left side was a complete success. I did have bothe the burning boring pain and the shocks on that side also, BUT the left side was only incovled for one year before I had the surgery. Dr. Brown told me that after about seven years or so or compression of the nerve, the success rate of the surgery decreases.
As a result of the PNS and the successful, left side MVD, I no longer take any medication, and my pain is completely controlled.
please fell free to ask my any other questions you might have.
Christine
Absolutely, Dan. Dr. Brown truly is a TN expert, and that is the focus of his practice. I went to see him six months after ( finally) getting a diagnosis by my local neurologist. About a month before my appointment with Dr. brown I had started getting shocks ,and the burning pain on my left. I actually thought I was crazy! After I had the high resolution MRI in his office, Dr. brown asked where my pain was. I told him it was primarily on my right, but I thought I might be getting the same pains on my left. Turns out I had a vein compression on my left side, along with a vein and an artery compression on the right, so I wasn’t crazy after all!
TN is so misunderstood by many. I really feel those of us that suffer from it need to see a doctor who is truly an expert in order to get the proper treatment. Dr. Brown is the one for me.
Christine
He obviously has scant training in TN and I hope that you can find a different specialist!! In the meantime you might want to try Spigelia in the C strength range to help with the pain-It's homeopathic with no ill effects and priced well-look for a Homeopathy online store if interested.I was laughed at by one MD I went to! I wish you the very best-things can improve!
I have had some success with Pure Turmeric Curcumin C3 from Vita Breeze found on Amazon. It is 750 MG and is suppose to be anti-inflammatory and antioxidant. I don't know if it really is helping or not, but seems to as the TN comes and goes during the day. It is so interesting that when I am playing golf or working out, I do not have the pain. My TN use to be much worse and this period of TN is after a one year remission. I am hoping to have it go into remission again soon. I did have an MRI and it shows a blood vessel hitting a nerve. Mayo Clinic wants to operate, but the pain will have to be much much worse before I will submit to an MVD operation.
I am also on Neurontin 300 MG at night. Wanted to add that to the above.
OSUBUCKS - when Dr. Brown looked at my MRI he confirmed that I did have a compression on the right (where I have most of the pain) but then realized his technician marked the sides incorrectly (or something to that effect), and, with some surprise, said that I actually have a compression on both sides…this makes total sense because sometimes the pain will suddenly switch to the left side, but is never as severe. So, it can happen and Dr. Brown said that he has seen it many times.
I only have type II pain though so I’m not sure how much of it is caused by the compressions vs something else.
Dr Browns number is 516 ■■■■■■■■. Ask to speak with his assistant, Kathy.
Hey OSUBUCKS - I actually just cancelled a follow up with Dr Brown for Thursday if you want to give the office a try and ask for Kathy. I’m a CPA in the middle of my busy season 
so now is not the right time for me to be exploring surgical options.
Definitely give it a shot if you’re desperate to get in. He is excellent.
Good luck!
Glad you found a doctor you like! Best of luck, and keep us posted.
How did you appt go with Dr. Lee?
I am still learning the basics. What kind of MRI did Dr. Brown do? He could see the vein and artery compression on the MRI? All in one office visit? I might have to travel to him because mine is bilateral, but I wish it were easier to get to his location.