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I'm New Here. Does anyone share these weird symptoms I'm having in my face

AnonymousUserAAnonymousUser Posts: 49,900
edited 06/11/2012 - 8:22 AM in Neck Pain: Cervical
Hi everyone.

I've got problems at 3 disc levels...C4-5, C5-6, and C6-7. My pain started January of this year. When the problem first surfaced, the pain was primarily in my neck, shoulders, and both arms. Over time, the pain also started affecting my legs. The pain is very random and varies in intensity. In May, I developed symptoms in the lower part of my face and my throat. I get excructiating pain along my jawline, behind and around my ears, and sometimes the pain is even in my ears so it feels like I have an ear infection...but I don't. It also feels like the muscles in my throat are in spasm and like my throat is closing up on me. At this point in time, the pain in my legs and arms has almost disappeared but the face pain is constant and freaks me out, especially when it feels like my throat is closing up on me.

I've seen 4 neurosurgeons. 3 of them tell me that my neck problems are not causing this pain in my face. The 4th surgeon said it could be from my neck.

I feel like I'm going crazy!!!! Is anyone else or has anyone else suffered with these type of syptoms in their face?
I hope someone can shed some light on this for me.

Thanks!!!!!!


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Comments

  • I forgot to mention in my original post that I went to an oral surgeon because I thought maybe it was TMJ...but my jaw x-ray was completely normal so that's not the problem.
  • Hi Kujerseygirl,

    What you are describing sounds like Trigeminal Neuralgia. I suffer from something similar Occipital Neuralgia, so over the last 10 years I have been bombarded with information on TN since the ON is treated the same way.

    Are you able to get a consult to a Neurologist? This is the type of specialist who typically diagnoses and treats Trigeminal Neuralgia. There are several different classifications of TN, so a lot of times, neurosurgeons and PCP's won't think what you are suffering is TN. The best thing to do is to try and see a Neurologist and explain your facial pain pathways.

    I have a dear friend who just underwent surgery to correct this. She had a large blood vessel that was compressing the Trigeminal nerve, causing the horrible facial pain.

    You can PM me if you want for more info.

    "C"
  • PS

    Welcome to Spine Health!
  • I know someone who has that and it does sound like the jaw pain she describes. Has anyone looked into that?
  • No, no one has looked into that yet. I called the NS this morning and spoke with his assistant who insisted that this pain in my face isn't coming from my neck problems. She did mention TN to me and suggested that I see an ENT about it but I saw an ENT a few weeks ago and he never mentioned TN to me. I think I should take "C"s advice and see a neurologist. I'm still trying to figure out if this is all related to my neck though.
  • TMJ and TN are waaay different beasts and I don't know if many ENT's are up to speed on TN.

    TN is typically caused by compression of the Trigeminal Nerve in the area in front of the ear

    http://www.mayoclinic.com/health/trigeminal-neuralgia/DS00446

    I would highly recommend trying to see a neurologist.

    "C"
  • This is very interesting. I have herniations in the same area of my neck. I am facing spinal fusion surgery in the very near future. That said, I have had TMJ for almost 2 months now. Not the same symptoms as TN, but I've been on soft foods for 2 months and still no relief. My pcp told me it is not related but it is very hard to believe.
  • Prior to surgery when my symptoms were at their worst I had numbness in the left side of my face, around my ear, when I would lay on my left side. I would also get a tingling feeling in my nose/sinus area. And, yes, I had that throat choking feeling as well. All of this has gone away since my C4-5 ACDF. Yep, the docs will tell you that your neck has nothing to do with the symptoms in your face....ummmm...yeah, right...maybe with the average, typical c-spine disk herniations. But, honestly, when you read all the posts, are we all the same, average, typical? Nope. I was also told that the leg symptoms I had were unusual since they were so prominent to one side. Apparently they should be symmetrical. Keep inquiring and pushing until the docs find out what's really causing your symptoms.

    Take care!
  • Hi Kujerseygirl,

    Like others have suggested, get checked by a neurologist to let him assess your symptoms and see if it might not be TN. I have suffered from TN for four years now and it took two dentists, an unnecessary root canal and a trip to the ER and then insisting I see a neurologist, waiting 3 hours in the ER and yes, that's exactly what it was. Thankfully mine is managed easily with Topomax in the a.m. and p.m. and I hardly ever have any episodes. Of course it seems when I think I'm fine and I don't need those pills anymore, the pain will come back with a vengeance, and indeed, I do need them. They can find no real cause for this pain, all the diagnostic tests come back clear, and that may be true for you too. But be persistent, don't let the doctors think you're crazy (they just might) and you'll eventually get to the bottom of this.

    I wish you the best. And hurry and get something for the pain! It's no way to live.

    Welcome aboard...

    Monique
  • Thanks to those of you who have responded to my original post! I greatly appreciate the input from everyone. This whole thing is just SOOOOO confusing and frustrating!! Okay, so the latest...I called one of the neurosurgeons who is still telling me that this facial pain is not related to my neck. They told me to speak again with the ENT who I saw last month. The ENT gave me the name of 2 doctors (one is a dentist, the other a chiropractor)who work together and perform the Atlas Orthogonal Technique. Does anyone know anything about this? They explained to me that if the Atlas (the top bone in the neck that connects the neck to the head)is out of whack and not properly aligned, then the rest of the spine is off. They use a non-surgical procedure to correct the positoning of the Atlas. Sounds interesting...makes sense when they explain it...and I so desperately want to believe that this could work!! They reviewed all of my MRIs and CT scans and said that yes, although I do have lots of issues in my neck, it does not look bad enough for surgery. The first 2 neurosurgeons I saw told me right away that I was not a surgical candidate. Okay...again, great...but then why do I still have this excruciating pain in my neck and my face...arm and leg pain sometimes very bad, but very random? These doctors who perform the AOT say they can help me. They were not at all surprised when I descibed my facial pain and explained that they see cases like mine all the time. They did mention the Trigeminal nerve being affected. I've asked the doctor if I can speak with former patients who had problems similar to me to talk with them about this procedure. Just wondering if anyone here knows anything at all about this. I know if I mention it to the neurosurgeons they'll tell me it's a bunch of BS...but they're not addressing the face pain which concerns me!! If I go ahead and have surgery and STILL have this facial pain because it ISN'T coming from the discs...I'll lose my mind!!!!!!
  • I experience the same things. Pain in my ears, my jaw line, throat, under my jaw in the nice cushy part, eyes, etc. Almost feels like I have a sinus infection everyday for the last 2 years.
  • Hey kx90. Has anyone explained why you're having the pain?
  • My NS says it's from the herniated discs, compressed discs, pinched nerves etc. in my C3 - C7.

    And I feel he is right beceause after the first set of injections and nerve ablations, the pain in my jaw, face, etc. subsided for a while.
  • I'm a person that feels trying as many non-surgical techniques as possible first (as long as they pass the good sense and logic test)is the best route to take. Have they been able to talk you through the procedure yet? I'd love to hear what it entails and how long it is supposed to last and success rate and possible hazards etc.

    Keep us up to date if you can.

    "C"
  • Hey kujerseygirl, I was wondering if you ever had the AO performed and what happened?
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