Chery, Geez, your story is so similar to mine! The only thing I would advise, if I may, is to make sure your ENT is familiar with TN. Mine was not and I did not need the TMJ surgery. In fact, it made everything worse. I had an MRI done by my ENT and he saw a slipped disc in my jaw joint, so there was something wrong, but it wasn't the source of my pain and I could have easily lived without the surgery. After the TMJ surgery, the pain was soooo much worse. I don't want anyone to go through that, and not to mention, an unnecessary surgery. I was put under for it and the recovery wasn't fun.
I'm recovering from MVD now, and that has been the hardest thing I've ever imagined. I had no clue the recovery was going to be this painful and difficult. I have had a very tough time. I am also currently in pain, 6 weeks out..I just posted an update on this discussion board.
I am wondering if I should just get the nerve snipped. Or why that wasn't an option that was mentioned to me. I just hope this pain will go away. I hope you get some answers. I also hope you don't go through TMJ surgery to find out it is TN. I think I knew it wasn't my jaw, because the pain was so deep in my head. I had never heard of TN...after the surgery I knew the pain was nerve related. I started doing research and stumbled on this forum. I learned of GN, diagnosed myself, and fast forward to 6 weeks after MVD. I guess I would think long and hard if the pain is your jaw or if it feels like a nerve. Gosh, I feel for you!!
Best wishes,
Danielle
Cheryl said:
This is an amazing site. I had that gruesome ear pain just before the TN came along full force (left side) about 5 years ago. I went to a couple of Dr's who said there was nothing wrong with my ears. I bought over the counter ear drops and that helped a bit. Once the TN came along it sort of took over and the ear pain went away.
I was in an automobile accident (I was a passenger) Aug.29 2014 and have had many other problems from the whiplash. About a month or so ago I started to get that piercing pain in my right ear and had TN/TMJ symptoms. I was/am pretty freaked out about it! A Dentist said my jaw is deviating to the right and I'm seeing a TMJ specialist Jan.5 2015. My Dr. has set me up for an MRI and a referral back to my Neurologist. The waiting game is so hard! I'm holding off from going back onto Gabapentin because I am one of those who can't tolerate it well. I couldn't take anymore than 600mg a day and once I was off for a while I realized how much depression it was causing me. For the first time in 5 years last summer I was off of all my meds, Gabapentin, Tylenol 3, and Flexeril. I was so happy and had more energy etc. Then this happened and I'm back on Tylenol 3 and Flexeril. The first month or so I was taking Tylenol 4. I now have PTSD and am seeing someone and I'm just finishing Physio after the visits were extended. Now I have all these appointments and will have to deal with the Insurance Co. But my BIGGEST fear is TN or TMJ on my right side. It feels more like TN but we'll see. The upside to this is that I had a window in the summer of only having to take extra strength Tylenol and my body was okay and not too much pain and I felt better. Even though I'm pretty upset that it had to happen, I can look back and be reminded of the hope of where I had gotten too and knowing that I can get there again!
I wish the best for you all in this painful journey! :)
understand your suffering. I have GN now for 8 years and have been searching high and low for help. I just had gamma knife 2 weeks ago and so far no relief. I hate waking up in the morning. Just another day to trudge through and try and cope. Death sound like a vacation to me. But I keep going and searching for help. Don't give up. When I find a cure I will definitely post it.
littlemoth, I have atypical GN and ATN. Neither for me are treatable with surgery or other invasive procedures. I know there is some good discussion with comments and stories about MVD for true GN being done in Pittsburgh or UMPC. You tube has a great video of this surgery. You do not describe your symptoms but I am assuming you get the stabbing pain in your ears.
Granny, stabbing pain in the ears is less often a symptom of Glossopharyngeal Neuralgia than of Nervus Intermedius (Geniculate) Neuralgia. Just to be sure we're all on the same page, which one are we talking about?
I am talking about stabbing pain in the ears being Geniculate neuralgia or symptoms of the Nervus Intermedius. Do these two sometimes cross over so you can get get 1 symptom of one and all of the other? I have a mixed ATN and GN. On my researching I do recall CN 5 was involved in both. Am I right? I did start the GN with stabbing ear pain and then it just became nagging constant ear pain including my ear lobes. I have a history of tmj too and some of us also have cervical neck problems that contribute to facial pain.
When I read someone's story and their symptoms the description of everyone's suffering is different and does not always follow the dx for just one of these facial pain neuralgias. We are all so unique and I try to perceive another sufferer's symptom like their whole scalp burns and they can't take a shower with hot water. An odd symptom attached to the symptoms of one of these cranial neuralgias. All of us that suffer from facial pain can dump it all here to share with so many others that have to go every day with feeling face pain. An invisible symptom.
RED, you are wonderful moderating this site for all of us. You can call me Sharon. But I did get 5 grandchildren over the past 4 years! 4 months to 5 years. The last one was a girl and she got my middle name. I feel my life is complete now. But now I want to more than ever to stay healthy to see them grow up! My physical state I can deal with, I can't loose my mind. I will 60 next birthday! Sharon
Sharon, I am far from alone in moderating his site, though I may be one of the most experienced in the Ben's Friends communities. I take the attitude that "it's not about me" and "you can get almost anything done if you don't care who takes the credit." There are several others here who highly deserve to take that credit for the good they do. I will be 71 in June. I began studying the medical literature and internet sources related to TN in 1996, on behalf of my wife (the TN patient in our household).
To clarify the physiology: Atypical Trigeminal Neuralgia (aka trigeminal neuropathic pain) affects the distribution of the 5th Cranial Nerve. Geniculate neuralgia affects a small nerve branch between the 7th and 8th cranial nerve. The distinction is meaningful given that MVD is more complex for the smaller nerve, and involves surgical penetration to deeper areas than usually seen in MVD on the 5th cranial nerve.
Red, I found a youtube showing MVD for geniculate neuralgia. It is dated February 2012. This MVD shown by this surgeon decompresses the 5th, 9-10th, and cuts the nervus intermedius. I have not researched any other MVD surgical procedure for that one. That is where I am getting that info.
I do know the 5th is 1 mm away from the tmj joint and my ear pain was similar to tmj when my GN started only it had stabbing at first where tmj was a constant deep screwdriver ear pain. My ear pain is no longer deep so doesn't even follow GN or tmj so I always say I am atypical. An ENT I saw awhile ago for the ear pain told me about how close the 5th was to that joint and my problems could be related. After that I did see a surgeon and I was ruled out for MVD. I have been dealing with facial pain since 1982 and it persisted until '98 or '99 but had a great remission from it with just peaks once in awhile until 2012! Never did much surfing the internet even after we got it in '95 as I was too busy raising kids.
And tell me if this is something new with me??? Ever since my 59th birthday I have no problem offering my age up to anyone. You seem like you have found your peace with this world. I have too. Even when I was hit so hard with a nerve injury after a surgery in April of last year that was not elective for my lumbar to add tons of new hardware to stablize my lumbar spine to my pelvis, I did not scream "Why me?!"
I have been in chronic pain from mild to severe since I was a very young women and I got stuck in that place over and over and I seem to know by now it only sets me back. I was very discouraged I would get better. I read horrible outcomes of the pain lasting 12 months and some never got better. My pain was severe for almost 6 months and then I started to improve and with the help of ESI's stopped the horrible sciatica spasms. I still get them but not lasting and usually mild to moderate. And as soon as I could manage it to walk with my walker to the pool I did within 2 months and I could not swim but I could stand in place and slowly raise my legs and march. I just started swimming again a month ago.
Whenever I see a post from a young mother in the beginning years of dealing with facial pain I can so relate. I always offer my long remission from it as it can happen. There truly is something very unique about the face hurting versus my back and leg pain although that one put me down and only up with a walker the face thing can drive you crazy.
Your wife I am sure is very happy to have the support you can give her as you have read it all by now and know this face thing can present with symptoms that are not in the book. I have been on several blogs for chronic pain and if not moderated things can get pretty confusing and even more frustrating. I don't stay on these blogs long.
You asked "tell me if this is something new with me???". If you mean are you unique, then I'd have to say no. There are significant variations in pain presentation between patients, even around the central tendencies. GN pain most often is felt as a stabbing deep in the ear, where TMJ more often has a more achy, distributed, imprecise character. Unless there is clicking in the TM joint, or lockups of the jaw, TMJ can be a bear to diagnose. I personally believe that TMJ is over-diagnosed by general dentists who don't have adequate training in recognizing facial neurological pain. Reading papers on TMJ, I am struck by the very large range of direct and referred symptoms that are sometimes attributed to TMJ. There is a paper I can send you however, on the process of differential diagnosis between the two. If you'd like the paper, let me know.
Spinal surgery is certainly no fun at all -- and frequently not effective in its intended result. My son went through a disc fusion after a surfing accident severely extended and bruised his cervical spinal chord. He's trying to cross-train out of carpentry and construction for something with the character of office work or light-duty building inspection. But it's not an easy process.
Parenthetically, I've been a "creature of the Internet" since 1990, when the first Web browser application was published. I've trained librarians in the use and evaluation of Internet sources, and others in the US Intelligence community in the steps they must take to avoid having covert agents compromised. So digging for information to assist pain patients comes sort of second nature.
As for whether I've "made my peace with the world"... maybe not so much. One might ask the learned professionals who write for Psychiatric News or Mad in America what they think of my criticisms of the lack of precision and science on both sides of the modern day crisis in psychiatric credibility. those views are well represented on my facebook pages.
I wish you well. I'm glad if any of my postings have given you useful input in managing your own pain journeys.
Thanks Red. I will have to check out your facebook page. I think it is good to be vigorous about something change needs to happen in and it sounds like you are not giving up on that one. Sharon