Laurin,

I'm the forum member that Jean referred to in her post. Dr. Linskey did my MVD a little over three years ago, and so far (knock on wood) everything has gone perfectly. In my opinion, Dr. Linskey is the best there is surgically, and he's also a wonderful, caring person. I had lots of people wonder why I didn't have my surgery done locally, and my response is always "if someone is going to cut into my head, I'm only going to have the best do it!"

Please feel free to contact me if you have questions or concerns, or if you just want to talk with someone who's been there/done that. I know how hard it was for me to go through this - I can't even imagine how hard it is to see your son in that much pain.

Susan

Susan!
Thank you for writing! I wrote an email to Dr. Linskey yesterday morning, but haven't heard back yet...I know it's too soon to hope for a response. We also have to go through our HMO (Kaiser) in order to have hope of a referral. I am so glad to know that you are still out of pain after three years! That is very encouraging! I will let you know if we hear from him!
Laurin

Hi Laurin,
Just to wish you and your family well hun. I will burn a candle for you to bring good luck and painfree wishes. Take care love and best wishes from England. Jackie xxx

Jackie,
Thank you for your wishes! All the way from England! We are in the high desert in California...I am so thankful for the internet and this forum! I wish you many pain free days too!
Laurin

Hi Laurin,
My heart goes out to you as the mother of a child with this condition. I am with Kaiser in northern CA. I had an MVD done within their system. You can petition Kaiser to allow you to seek an outside specialist. I do not know how to do so, I just have heard from nurses that it is a possibility, if Kaiser cannot provide the adequate level of expertise. Having family who worked for them, I know that they outsource entire specialties in some circumstances. It depends.
If you have any questions in regard to MVDs, let me know if I can help. I am on sporadically, so it may be a while before I post back, but I will try to remember to check in in the coming weeks.
Again, , but you are not alone as long as you have us.
Lily

I am a newbie, I was diagnosed with TN last November tried meds, however they did not subside the pain enough to continue working normally and left me very tired and cloudy. I had my MVD in February this year. After a 6 hours surgery, two days in ICU and two days in a regular hospital room I went home.I returned to work 4 1/2 weeks after surgery and that seems to be working ok. I am 3 months post op today, still am numb on the lower half of my face including half my tongue, lips and chin also right in front of my ear. I have some attacks, however they are not intense and are more of a bother than a pain not at all like the attacks prior to surgery. My face itches all the time and I have twinges in my lips and chin. More recently I have been having pain in my incision area and inside the bottom of my eye. I am still on my meds at 600ml per day, mostly because the fear of attacks prevent me from stopping! Doc says this is all normal any thoughts? Thanks in advance for your help.