Hello, I have had atypical Trigeminal neuralgia for going on 8 years now, and am only 24. I have tried trileptal, gabapentin, Valium, carbmezapine, nortriptyline, and baclofen for meds…have had a 2 sympathetic nerve blocks with no relief, and a Trigeminal neuralgia nerve block that doubled my pain, and an unsuccessful cyber knife treatment.
I am currently living in Arizona, had to leave my life and job in Seattle last fall due to my atn worsening. I met a fellow atn sufferer through a support site a couple years ago. We have since become close friends, who have come to rely on each other to survive since we are the only ones one another can understand. She currently lives in myrtle beach, SC. I flew here a week ago, wanting to finally meet after becoming such close friends. While I am here, I wanted to search google to see if there are any specialist for TN in the area, and the laser med center for Trigeminal neuralgia was the first thing to pop up. I was elated to read about the success rate they have had, along with watching the testimonial videos of very satisfied patients who found RELIEF! We happen to be 5 MILES from this center, which felt like I came HERE for a reason, and that maybe THIS is something that will actually work or help in anyway. I called them and made an appointment for a free consultation immediately. Our appointment is Monday, March 21st. We are aware of the $5700 cost, and want to be as informed as possible going into this, as this is very expensive and of course sounds too good to be true, and ESPECIALLY with atypical TN, treatments seem to be less successful and more risky.
PLEASE if you have been to this center, and have recieved treatment, or know of someone who has-reply to this discussion with information/details of your experience. Especially weather or not you experienced any relief from their laser light therapy. We have already read some of the other discussions about this place, and really didn’t find anything conclusive-just opinions. So please respond if you can be helpful, we would so much appreciate it, as all of us who have this god awful nerve pain have to look out for each other!!
I have talked with several very dissatisfied patients who had this therapy and saw no positive results from it. The Center is also very aggressive about payment. I've also looked for published papers on the use of low level laser illumination in trigeminal neuralgia, and found nothing reliable. Just about all of the "evidence" for this procedure is from testimonials -- and that is the weakest form of medical evidence, too often purchased by scammers or made up out of thin air.
I am sorry you have been having such a rough time. I am 25 and last fall I had to quit my Job and move back to Seattle to live with my parents, after my first year of ATN. I have been very frustrated with the lack of relief and abundance of side effects from the medications, and the lack of understanding doctors have about TN in general. Most the time I have to explain that ATN exists and is different. I have daily break through pain on a near max dose of Nortriptyline. It is far from a perfect solution, but at least I want to stay alive most the time now. I have been very discouraged by all the possible procedures. None of them have a good enough success rate with ATN to make me feel confident they are a good choice. I am very afraid of making it worse AND going into severe debt at the same time. I saw that Red advised against this new laser thing, but if you find something that does work I would love to hear about it! Best of luck!
I feel for you and the fact that you are so young and going through this horrific pain. I just want to give you my two cents and whether or not its helpful to you, I am simply speaking from a supportive side. There are good specialists, procedures and medications out there, some are great for certain people, others get slim to no relief. The truth about TN is that you might be taking a chance by the new doctor, treatment, medication, etc., but for most in this group, I believe I can say when the pain is at a certain level where you are unable to tolerate it, one becomes "desperate" and anything is worth a try, whether it be successful, expensive or even temporary. I wish I could say something more positive but this seems to be common. I do wish you the best of luck and I pray for God's healing in your body. I hope all goes well tomorrow.
Is it the lasermed.com? My aunt gave me the website last week because someone she knows had it done a few years ago with much success. She said she stayed there for a week and when she came back she was a different person! Hope this helps, let me know how it goes.