I have been sitting here thinking one of the greatest things about Living With TN is we share our experiences, in hopes that we help each other through, what I call, the TN minefield.
So, I ask how did you pick your doctors? Was it based on doctor reputation? Were you forced to pick a doctor based on a list of providers your insurance would pay for? If you live in places like the United Kingdom and get your care through the NHS do you get to choose at all? I know, personally, when I had my first TN relapse, I did not get to chose my doctors. I was getting my care at the local Veteran's Hospital, and I had to take who ever was assigned to my case. I refused to go back to the neurologist he was such a arrogant ass, and had my primary care doctor do my TN medicine follow-up I did not wait until I was in a state of total desperation before I asked for a consult to neurosurgery. I met with the chief of neurosurgery 3 times before I went ahead with surgery. Had he not gone into surgery staffing meeting, and put his professional reputation on the line, on my behalf, my first MVD would never have happened. After a illegal drop from the VA healthcare system, I ended up on Oregon State Medicaid. I have decided not to fight the drop from VA care as it opened the door for me to go to OHSU neurosurgery. The head of the neurosurgery department does not take Medicaid, but the neurosurgeon I have does. I first met Dr Raslan, when he assisted on my MVD, as a fifth year resident, over at the VA. While Dr Kim Burchiel will not take my insurance, I still get his expertise as Dr Raslan consults with him. One might say I did not make a wise decision going to such a "new" doctor, but I for one will not let anyone else operate on me. I know I can trust him, and that is a MAJOR part of my personal decision making when it comes to choosing a doctor. I also like his conservative approach to surgery. I have heard of too many stories of surgeons down playing the risks and benefits of TN surgery and patients being hurt.
I look forward to hearing your stories. I personally believe we can really help each other here.
The first doctor I chose based on his website and patient testimonials and the fact that he used a minimally invasive endoscope to access the TN. He ended up being out of network and so my insurance company looked for another surgeon that also used the minimally invasive endoscope. There are not a lot of surgeons currently using this from the research they did and I did and the closest Dr. they found was in LA (about 1200 miles from North Idaho). I went online and was amazed at the credentials Dr. Michael Alexander of Cedar Sinai had from head of neurology department at Duke to honors at UCLA med school. He had done around 250-300 of the mvd procedures but thousands of intra-cranial arterial nerve related procedures. I felt very confident after speaking with him, and he proved to be very skilled based on the outcome and recovery I had with the mvd surgery in July of this year.
My first doctors were just referrals from my primary doctor. When I realized I had did have TN then I started my own research. I found Dr. Casey on the blogs like Living with TN. Thankfully, I had no issues from my insurance about going to him. He did my MVD about 2 months later and I have been pain free since March 2012 and off all meds since March 2012.
We found Dr.Valerio through Cleveland Clinic (Weston Florida) my mom was a patient of Dr.Rodriguez (neuro) and she referred us to him. He has done 2 successful balloon compressions on her. We are seeing Dr.Wolf (Miami) for possible Gamma Knife. Dr. Valerio is amazing, talented, VERY smart, relatable, and passionate. http://josevaleriomd.com
First, found the Pain Face Association TN/ site, but I liked it here better.... I bounced back and forth in Oct. 2010 as I got hit by a truck named "bad Dr. Oral Surgeon"
So I read Dr. Caseys Book, I watched 2 videos of him, and I think I required here and few were on his watchlist, because most get better and don't come back here!
So I emailed him before I had been DONE with meds in less than a year. I asked my Neurologist to give me Ritalin to focus with MVD, and put lidociane on my face, and lowered my trileptal and ONLY read all Casey, All MVD for weeks.
When I emailed him (Casey) for a local surgeon - (even though my neuro here said NO LOCALs here please)
He said he would do it.....asked me to send him the McGill Pain Scale to him on email, and got my records from my neruo.
My neuro was soooo very thinking I was crazy or brave - to fly off and get an MVD from MO to MI.
One year to the month
of the Oral Surgeon From Hell that changed my life
Casey found 2 compressions, at age 48. Now year two - this last month -- NO pain!
That is my short version!
Since then I've Mentioned Casey to probably 50 here - and LIDOCAINE patches on the face to HUNDREDS!
I went in and out of remission - most small pains - but took 2 years and another remission.....not a cure....but happy and would do it again----
if Dr. Casey retires....I have researched Dr. Lim at Baltimore - John Hopkins if MVD ever comes back to my life!
I researched a couple of the neuro places near where I live and also some a few hours away. I found a great neurosurgeon less than an hour from me and I found a great place about 3.5 hours away. I decided to try the closest one first. I researched the doctors there and chose who to see based on their TN experience. I liked him and so he is who I go to.