My husband has had ATN for over 4 years. He had a sinus infection that was treated with numerous rounds of antibiotics and then 3 surgeries in 4 months. After the third surgery the infection was gone but the pain wasn’t. His ENT tried several things then referred him to a neurologist who told him he didn’t have TN and sent him packing. We have been to a long list of doctors and tried over 50 medications trying to get an answer. Finally we got ATN but none of the doctors he has seen has any new ideas and none of them do any of the surgeries I’ve seen listed. We recently lost our insurance, he can no loner work because of the pain so he lost his job (I’m self employed). He has been going to the Veteran’s Admin for his medical care and it is mostly wonderful care but it isn’t geared toward his problem. They are considering referring him “out” to a non-VA doc but may have trouble getting this approved. If one of his VA drs will put in the request I need to find someone who has experience with this, preferably in the midwest to make travel easier. Can anyone tell me where to look? Also, twice he had what they called Radio Frequency Ablation. Is this the same as Radio Frequency Rhizotomy? This situation is gettig pretty scary because he has been in treatment for serious depression for many years and it is very difficult to control the mental health issues with so much physical pain. I’ll take all the help I can get, Thanks.
Dear Carolyn,
My heart goes out to you and your husband. I, too, have ATN. I haven't been able to work for a very long time, my husband is self-employed, like you, and I also suffer from depression & anxiety. I can fully appreciate your situation and the herculean efforts that you and your husband have made to try to find help.
There is a great resource for locating doctors who specialize in the treatment of TN/ATN. Visit the website www.endthepain.org (the facial pain association/trigeminal neuralgia association). Click on the "Health Providers" link. You can then search for a provider in your area by State,by type of physician or by medical facility. I have seen both a neurosurgeon and currently a neurologist. According to what you have written it sounds as if you and your husband may be ready to begin looking into the different surgeries available to those with TN. While I have not had surgery I do know through my research that MVD (micro-vascular decompression) is the most statistically successful surgery with some exceptions. However, there are others, too.
As to insurance... I do hope that your husband is able to get a referral from his VA doctor. I still believe, with some naivety, that there is good in the world and that by calling doctors offices and financial departments it will be possible for your husband to see a specialist and get the help he needs and deserves. My mother who is an insurance agent, always tells me that sometimes it is better to have no insurance than bad or non-comprehensive insurance...
There is a member on this site who is full of research and could probably assist you much more than I. His name is Red Lawhern. I suggest that you write a comment on his page as he is always more than happy to help. I have benefited greatly from his help and from the many others on this site.
Sending you and your husband warm thoughts... Best. Johanna
For Johanna: thanks for the compliment. It certainly beats being told that I'm "full of it"... {:-) However, I also monitor this group regularly, so I'll offer a couple of things to add to your own.
For Carolyn: another approach to the TN Association may be to do a search in their information base on nearby large cities. That search tends to turn up doctor resumes that might not show in their Health Providers Link.
Likewise, I suggest that you do some reading in our "Face Pain Info" main tab on the menu of all our pages. The article is a long one, but it summarizes treatment options among other things. If your husband has already had two Radio Frequency Ablations (also called Radio Frequency Rhizotomy), then many neurosurgeons would not consider him to be a good candidate for further surgery attempts. ATN is often not as responsive to surgery as Typical TN, and some surgeons consider the procedures other than MVD to be actively harmful by creating further facial neuropathy in ATN patients. So that basically leaves medication as the primary avenue of approach. The tricyclic antidepressant meds are generally seen as the first or second line of defense against ATN. However there is emerging support among medical profession for the use of Methadone, which directly suppresses Seratonin and Epinephrine re-uptake processes.
Mental health issues are strongly represented in an article just posted under the Face Pain Info tab: see "Coping With Crisis". Feel free to follow up in the comments box there or by direct email after you "friend" me on the site.
Go in Peace and Power
R.A. "Red" Lawhern, Ph.D.
Resident Research Analyst, LwTN
are you familiar with the use of blocks as in my case. Usf wants another MRI for their evaluation. I need more info from the pain dr. i just saw. I dont know what is in the local, the odds of it working. He said it usually lasts for 6 weeks. I really could use your help before I schedule the local.
I am not a candidate for any type of surgery such as MVD, correct. I could not understand caseys implication, but they do want another MRI.
thanks.