Strange Discovery Made by My Daughter About My Face That I Missed

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Hello Friends,

Something which I realized last night has me questioning my entire diagnosis and not knowing where to begin again.

First of all, I have all of the symptoms, as described, of Type II TN, and it's been building for years, getting worse, until it affects every aspect of my daily living and I have to take multiple medications to get through the day without excruciating, boring pain.

Last night, though, while my 16 year old and I were in the kitchen. I was clearly enduring facial pain, so she took both of her hands and placed them on either side of my face and pressed on each sides, rather firmly, at the hinges and proceeded to massage a bit. Then, she removed her hands from my face, backed up, gave me a peculiar look, an ask, "Why does the right side of your face feel like there is a bunch of scar tissue underneath your skin, and the left feels normal?"

Back when I thought I had TMJ, I had wondered this too, because back then, I incessantly rubbed my face hard, because I instinctively want to put my hands wherever the pain is.

I have been feeling it on and off today and she's right.

Oh my gosh, these past few years, I've seen so many doctors. I'm so sick of doctors. I'm so sick of medication.

Why would none of these doctors have actually felt the musculature of my face? Could something about this be the root of my pain? My dental exams were normal.

What could this be?

I do remember seeing an X-Ray, at one time, in a dentist's office, not that he made much ado about it, but where the right side of my face appears to be cloudy on the x-ray, as if there WAS a bunch of scar tissue surrounding the joint area. I stated to the dentist, my diagnoses at the time, TMJ with a suspicion of Trigeminal Neuralgia.

As I feel my face, it would seem that, in a relaxed position, the musculature of the right side jaw covers part of my back teeth on the right, but not on the left.

I've noticed no facial asymmetry, but underneath the skin, the sides of my face are, indeed, different.

I've been waiting to get into see an internist whom a friend of mine works for, for the longest time now. She's been on sick leave, unable to work, and I am only being able to slide into his office because she cares. He is not formally seeing new patients. Oh, thank God for this. I hope it happens before I have to see my conservative Pain Clinic again. I really need to get to the bottom of my problem. I feel that my diagnosis was rushed before all possibilities were considered. I feel that one doctor just parroted what the first doctor thought it was, from my first Pain Management doctor on, without really taking the time to make referrals, to try to explore if my problem may have more to it than meets the eyes.

Presentation of symptoms were on my right side, back in 2003. I was given a diagnosis of TMJ and put on Valium. The dosage was just upped and upped over the years, until it no longer worked, and I had to seek pain management due to being in "emergency room quality" pain on a daily basis by 2009. MRIs' show no TMJ, so they can only assume it is ATN, or Type II TN. But, what about the palpable difference in the sides of my face?

I feel I have fallen through the cracks of the healthcare system.

I so hope that I can get into see that Internist. If so, I'm starting from scratch. I'm explaining to him not only my diagnosis of Type II TN, which seems to now have Type I qualities as well sometimes, twinges of electrical type feelings, but also that my face does not match at all inside, could this not be of SOME CONCERN?

I've always noticed it. If a 16 year old child can feel it, and it was once visible on an X-ray, then why would it not show up on an MRI, and why was it not taken into account?

I'm so confused. . . . . . and lopsided *laughs*.

Ughhh! My Grandmother lies dying, it's raining and I'm in Lvl 6 pain right now, despite 15 mg. Roxicodone, 30 mg. Methadone and 10 mg. Valium already today by 1:35 p.m.

I battle chronic constipation, and chronic depression. I am almost hated , at times, (I do believe deep down that she loves me) by my daughter for not having a lucrative job as I did in the past. I can't provide well for my family and am one house payment behind.

Well, time to go fill out disability papers stating that I have Trigeminal Neuralgia, Type II, as diagnosed. It's true. I have pain which would prevent me from holding a normal job. But, wow, why was the problem with my facial musculature, tumor, mass, cysts, or whatever the heck causes the right side to feel more tensed and bulked up underneath my skin never addressed? Why would it not show on 2 MRIs', but would on an X-Ray?

What if this is something fixable and not the dreaded, no-cure-no-surgery-just-drugs (unless you presented with Type I symptoms) Type II TN? Why did no one have me see an oral surgeon before all of these Neurologists, who of course, are going to say that it's something Neurological? Why not? It's how they get paid?

Well, it may be, but I feel a crucial part of my particular medical puzzle has been completely missed.

All of my best wishes, and good luck to each of you here for finding informed, compassionate and caring physicans out there. They are so rare, so hard to come by, I feel.

It's sort of remind me of those fortune telling machines I used to see out in Vegas, when my Grandfather would take the family, when I was little. You give them money, and they spit out a little slip of paper with something on it. They don't really know.

But, at any rate . . .

In love and light,

Stef

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You asked, "Why would it not show on 2 MRIs', but would on an X-Ray?" I am not a doctor, but because I have multiple sclerosis, I've had lots and lots of MRIs so I know a little about them. Keep in mind that of course I have no knowledge of why it doesn't show in your particular case. But part of what little I do know is that fat pads often hide any underlying defect during an MRI, so if there is a layer of fat over whatever the problem is, that might be obscuring the MRI image. The x-ray of course penetrates through the fat and is stopped by something harder or calcified, thereby making the image. What is called a "3T MRI" can see things other MRIs can't. I've not had anything but 2T MRIs, so I can't personally speak for the 3T.

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Stef … You worked hard your whole life until you got sick with TN. You deserve to have disability to lesson the worry and anxiety that comes with chronic pain. The first thing I did when I got sick was use up all my sick says … Short term LTD and applied for LTD with the help of work place health and safety. There will be people available to help you now that you have been off so long there will be no waiting period etc. Do it for your family. You deserve more.
Find something you enjoy, I help families dealing with my type of rare cancer through Emerson Angels. No pay but it’s work I enjoy and can do when I can do it. Let me know if you need help with the process via CPP.
Luv ya,
Hugs and prayers,
Tracy

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Stef,
Have you had any trauma to your face that you’d forgotten about or dismissed? You really should get it checked. You might have damage that may or may not be related to your ATN.

I was in a bad car crash eight years ago. The air bag didn’t activate because of the strange angle the other car hit mine and the side of my face hit the edge of the steering wheel. There’s a significant amount of scar tissue that can be felt, but only seen on X-ray.

Deepest sympathy about your grandmother. I hope you find some answers and some peace.

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Thanks for responding, and I'm sorry that it took me so long to respond. Oh, Stella, I've heard MRI's called so many things now that my head is spinning . . . .Fiesta, Thin Slice, 3T, etc. I've been told conflicting things about them by doctors. I'm beginning to think if there are just all kinds of machines with all sorts of different clarity to them. I don't know. I'll probably research this, although, I believe that the Internist I am now waiting to see may order an MRI of my face. Hopefully.

Tracy, I'm trying. It's really been my fault that the process is going so slow. I'll stop it and drop it every once in awhile, in denial, and start looking for jobs online again. Now, I'm just hands down pursuing disability. Yes, if I get it, I may volunteer somewhere. I had the same thought. You are so wonderful, lady, as you always seem to be able to see the bright side of every situation. Thank for weighing in. I've missed you.

I appreciate it, Zen Blonde. As of right now, Grandmother's little 90 yr. old body just won't give up, although she doesn't seem very alive. Seeing her there makes me miss her. There comes a time when "passing away" is just the best thing. I know.

As for trauma to my face, I can't remember anything, except for that I had to wait a long time to get my wisdom teeth, which had partially erupted out back in 99, or 2000 . . I can't remember. When the doctor was extracting the one on the right, he did crack it on it's way out. It WAS SO LOUD! He said, "don't worry, that happens sometimes". I had big holes where my wisdom teeth were for a long time. Eventually, they closed up. All I can think is that, perhaps, my facial symmetry may have adjusted for the wisdom tooth, when it got so big, that it was literally coming out the side of my gum, which may have caused the problem, or the dentist cracking the tooth, which would be close to the point of the onset of my pain in 2003 . . . . .well, one of those two things could have possibly have damaged my TN nerve, and it took a couple of years for the damage to cause problems. It's a guess. But, some doc may tell me that this would be impossible for some reason.

Onward I go to more docs, as many as I can see, for more tests, and hopefully, to get disability. For some reason, it's been hard for my family to accept that this is permanent, that no surgery will fix it, my Father and children especially, well, my Mother too, who worked for Neuros previously and refused to believe that I had ATN until I showed it to her in black and white.

I'm a widowed only child, only Grandchild on both sides of my family, with two children of my own. I was a rock for so many for so long. Now, I cannot do what I used to for anyone, not even myself.

I have a family in crisis. I guess that is another blog.

My kids are still trying to recover from losing their Dad, now, they have to come to grips with the fact that Mom has a horrible, inoperable, chronic pain which is only responsive to drugs which are wrecking her, and they see it. My sorrow for my girls runs and cuts deep and wide.

Every morning, I awake to what's left of this life and try to put on as happy a face as possible, but, like my kid said, "the right side feels lumpy", so I'll have it checked out!

Onward, if not upward.

I hope everyone else is doing better with this in their journey than I am, at least . . . . at this point.

In love and light,

Stef

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Good Luck Stefanie, but I agree with Tracy , less worry about finances would be soo much help right now. Couldn't you alway go back off disability if you wanted and go back to work?? IDK. But I do know stress is not gooood for us.. I worry about you. Peace Min

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I am so sorry that you have so many un-answerd questions... I know exactly how that feels, I was talking today with my sister about how it is hard for me to accept the fact that this is going to be with me forever. I feel like I obsess over it and prbably not a good idea but I have a copy of my CT scan that I have looked at and looked at to try and find something the someone hasn't seen. At this point I feel like I have talked to every doctor, I start to question my own sanity and if I this is all real and when I am going to wake up from my nightmare... this is the first time I have commented on anyones post, but I think that it will help to get all of your questions answer. I guess the hardest part for me is that I don't know when to stop asking well what if this? or what if that? I hope this is helpful to you, I guess I just really wanted to tell you that I feel the same way, like no one cares about MY health, and MY life as much as I do, I have just tried to be my own advicate and educate myself as much as possible...

-Sarah

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Hi Stef, I have scar tissue in my jaw joint too. I think a nerve or 2 might be entrapped on the scar tissue, but when I mentioned it to my Dr., he said nothing could be done because surgery or laser etc. always causes MORE scar tissue in a short time. They might have seen some slight scar tissuee there, but they might not have any remedy for it, so why mention it? Sadly, doctors often think that way. Also what your daughter thought was scar tissue, may have been a very tight, knotted muscle right there. When it is touchable, I have massaged that muscle with my pain cream, and I think this is why a nuscle relaxant helps, because everything spasms up in that joint. it's still TN2 even if there is scar tissue there.

I'm looking all over for a photo you posted somewhere. It's a side view of the 3 different sections of the head. Do you now where it is?

I'm so sorry that your granndmother has now passed. (((soft hugs)))

Blessings, Sheila

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Oh I just found the picture I was mentioning. It's the group picture for "Secondary TN." It isn't the one you posted. Yours was in pastel colors and gray, but this will work. Just talkedto a lady who was ashamed to mention shocks in her mouth, it sounded too crazy, and she thought others would think she's crazy. She cried when I told her this is due to TN.

Love, Sheila

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i just read your msg about dentist finding cloudy substance in jaw? i had similar after having wisdom removed my paid can back after one year. on looking at xray we could see a small area in jaw bone a different colour to the rest. i had a professor come in and 3-4 hour operation to dig it out. a couple of years later taking another xray we saw that it is back. went ahead and did another op. must say my dentist has helped me more than any neurologist here. but last year when admitted to hospital with SEVERE pain and put on i.v phenytoin i had a mri and neurologist couldnt see anything. i am confused as hell