Home Forums Support and Opinion Forums Open Discussion Forum Facial Pain after jaw muscle cut during surgery – Anyone else?

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    • #1258 Score: 0
      Herb F

      My trigeminal schwannoma was over 3 cm and I had few symptoms when it was discovered 5/31/12. Mostly my hands were getting painful to use and I had some balance problems. Once discovered surgery was a few days later because it was pressing on my brainstem and could cause a sudden heart attack or stroke. So weighing other options was not possible and surgery was on 6/12/12. My MRIs since then have shown no growth or change in the 15% percent of the tumor which could not be removed safely. Other than a profound tiredness which comes over me every day after lunch time, The right side of my face is numb, I can’t chew on my right side, and my ears ring constantly, all of which are things I’ve learned to live with. I also tolerate sudden twinges of shooting nerve pain, that comes and goes quickly. The lack of feeling around my right eye, however, is harder to deal with. It is a burning sensation, like getting soap in your eye, but gets worse with bright light and daily stress. So far, doctors have tried four separate medications to no avail. Gabapentin, Tegretol, Cymbalta, and Lyrica have all failed to ease this. Following my next MRI in February I am goimg to be looking into gamma knife surgery. My surgeon had initially intended to order radiation treatment for the balance of the tumor if it became unstable or started to grow back, but having a burn in my eye is anything but stable. I wear sunglasses over my regular eyeglasses much of the day.

      • #1260 Score: 0
        Beth Rosenthal

        Hi Herb. I have a number of the same side-effects. Next time we meet, we can discuss the tinnitus (ringing in the ear), numb side of face, nerve pain and eye pain. Maybe we can help each other. But did you ever try eye drops?

        • #1261 Score: 0
          Herb F

          Thanks Beth. My opthalmologist suggested it about a year ago. But I had so many other issues at the time, trying to establish my disability as certified for SSDI. And It didn’t seem like he really understood this is from nerve damage not my eyes not producing enough tears. That said, if you could send me the name of your neuro opthalmologist I’d like to see him. Also, we need a February lunch date!

          • #1263 Score: 0
            Beth Rosenthal

            Hi Herb! I see a cornea specialist in Teaneck named Dr. David Chu. Also, there’s a nuero opthalologist on Oak Tree Rd. in Edison, Dr. Barry Schanzer, who I used for years. I hope you have a great vacation. What day are you in Edison? Wednesdays?

    • #1256 Score: 0
      Helen S

      I had a trigeminal schwannoma removed six months ago because it was causing facial nerve pain on my left side near my chin. My scar is about the same as yours (just on the left side) and I have a crater at my left temple. My surgeon said it is because the muscle there is weakened/died and there was no way to bringing it back. For the first few months, I still continued to have facial nerve pain, but that has went away. The only side effects that still linger are slight numbness on the left side of my face near my chin, ringing/drumming in my left ear, sensitivity at and around the scar, and occasional plugging of the left ear. I also can’t open my mouth very wide or chew hard foods because they cut through the chewing muscle on the left side to get to the tumor. I don’t really don’t have any pain relief suggestions, but in terms of my mouth, I practice opening my mouth as wide as I can and continuing to chew on my left side whenever possible to strengthen that muscle.

    • #1254 Score: 0
      Reni

      I had surgery on 1/29/13 to remove an egg size meningioma, the surgeon had to cut my jaw muscle. My jaw pain was awful and I too couldn’t open my mouth very wide. I started physical therapy and she has helped me tremendously by doing myofascial release which is a form of soft tissue therapy. I still have jaw pain but it’s getting better with each treatment. So my advice is to not give up, keep trying different things to get relief (i.e. Physical Therapy; Massage; Accupuncture; Chiropractic).
      Hope this helps!

    • #1250 Score: 0
      Jane S

      Hi,
      I also had my jaw bone cut and found that more painful than my head the pain
      lasted a long time with my jaw i was only on steriods but this controlled some of the face pain.

      • #1252 Score: 0
        Ann G

        Hi Jane,
        I still have head pain 9 months later post surgery. From my forehead down to my right jaw 24/7, gets much worse when I eat & try to open my mouth & chew food. I’m irritable & very cranky with the pain since surgery…….My Neuro Dr. recently advised me to visit a Dentist? My head scar hurts, especially very much in the NY cold weather, it’s a very deep, deep ugly long scar. I’ve been told the pain is from scar tissue but I have had pain since day 1? I look online & see many women with this thin lace like scar on their foreheads. My M. was only 2 CM, Grade 1, but I’ve been left with a deep, deep crater in the top of my head, I catch my comb it constantly. I should have had it ZAPPED out, I have many, regrets with this surgery. I only had one opinion & feel now I should have taken a different course (Radiation) if possible maybe, I was told too close to the carotids & optic? I had my Surgery done in a NYC teaching Hosp, so who knows? A

        I supposedly had one of the best Brain Surgeons in NYC, so can’t undersatand why, he said he had to cut through bone. I also have a titanium plate & screws to keep the bone flap closed

    • #1248 Score: 0
      Naomi I

      Hi – I also had my right jaw muscle cut during surgery in 2009 and while it doesn’t hurt, per se, I still cannot open my jaw very much (about 1.25 inches) and there is a strange “crunchy” sound where my jaw and my skull meet. One of my docs said it was because the joint where the jaw and skull meet are not perfectly aligned. So when I am wearing glasses, for example, when I open my jaw too much it hurts where at the joint where the glasses hit. If I touch it while I am open my jaw it feels like it’s crunching. It’s kind of hard to explain … I also have a big scar (ear to ear over the top of my head) and it has craters as well (particularly near the right ear).

    • #1246 Score: 0
      Beth Rosenthal

      I’m so sorry, Ann. I’m sure that’s so difficult to live with. I have nerve pain from my radiation treatment. Trigeminal neuralgia stole 12 yrs. of my life being doped up an in agony all day, every day. I finally have an amazing pain specialist and the pain is controlled most of the year. Let me know if you ever want to see a specialist for pain. Good luck!

    • #1244 Score: 0
      Ann G

      I had a 2 CM. N.M. Meningioma removed @ Cornell in NYC last May, 2012. I continue to have right facial pain after my right facial muscle was cut during surgery. I recently asked the Surgeon & P.A. this past week about the pain & he said “Sometimes the pain never leaves certain Patients? I would like to ask if anyone else on this board suffers from pain as I do after having their right jaw muscle cut & if they have any pain relief suggestions? The pain is not leaving & I have it 24/7 & have great difficulty eating & opening my mouth.

      My head scar is quite deep & long in my hair line, running from my mid forehead down to my right ear & the Surgeon said it’s like this because he had to cut through bone? It feels like a deep crater & sometimes I catch my comb in it. Thank you, Ann G. from NY.

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