I just read an article regarding trigeminal neuropathic pain/ATN/whatever you want to call it. This article was stating that through the progression of the condition, you may begin to experience numbness, and then weakness of the jaw muscles, which could lead to inability to chew and talk, essentially. The only quality of pain that I have had has been aching and occasionally stabbing pain, thus far, but I am only 7 months into this horrible condition. This article also mentioned hearing loss, vision loss, and loss of taste.
Has anyone that has had ATN for a good amount of time began experiencing numbness and weakness of the jaw muscles, when they didn't experience those symptoms to begin with? This article was very concerning to me.
Hearing and vision are innervated by completely different nerves so I don't see how they would be affected, unless you had a progressive nerve condition like multiple sclerosis or a brain tumour which was the cause of your TN. Some people experience damage to their hearing due to MVD surgery because of the close proximity of the vestibulocochlear nerve (VIII) to the surgical area. Have you had a MRI? I had one and it came back normal, so I'm not worried about my pain spreading beyond V3, which is where the damage occurred. Mine is dentistry related (sigh).
Toothache, mine was caused by getting 3 molars filled. Mine started out in V3, but has since spread to all branches and even the back of my head. No one understands why. And the trigeminal nerve innervates the tensor tympani and other structured that are vital for hearing. It also provides sensation to the eye, so if you lose sensation, your vision would be compromised. This was just concerning to me because the article was basically saying if you have numbness, it puts you at risk for these further complications. My MRI was normal.
Toothache said:
Hearing and vision are innervated by completely different nerves so I don’t see how they would be affected, unless you had a progressive nerve condition like multiple sclerosis or a brain tumour which was the cause of your TN. Some people experience damage to their hearing due to MVD surgery because of the close proximity of the vestibulocochlear nerve (VIII) to the surgical area. Have you had a MRI? I had one and it came back normal, so I’m not worried about my pain spreading beyond V3, which is where the damage occurred. Mine is dentistry related (sigh).
I definitely could have misinterpreted some of the info, but it just was worrisome to me. I’m sure if this was a common thing that happens, then I would have heard about it on LwTN, but I haven’t. I don’t mean to create anxiety for anyone. I just was searching for some reassurance.
Thoughts on this article, anyone?
Tineline said:
Could you possibly link us to the article or provide a title? I have never heard of either of those complications.
I just skimmed over the article, but I can tell you that it speaks predominantly of TNO Trigeminal Neuropathy ( injury to the neurons within the trigeminal nerve) Not to be confused with TN 1 or ATN ( TN2)
In regards to progression of TN or ATN (1 or 2) each of us individually may share similarities, but our journeys with TN our unique. I have had bilateral TN since 2002, after years of remission, one side came back and has remained managed by meds, and the other side got progressively worse…The pain increased, as well as the locations of where I felt them, and triggers increased.
TN can be progressive, PAIN wise, and tends to not respond as well to medications which in turn affects quality of life.
Mimi
Mimi, I see that the article speaks about trigeminal neuropathy, which is what I have secondary to dental work. I have read about the differences between TNO and ATN, but I’ve read on this forum about people believing them to be the same thing. Anyhow, it makes sense that if you’ve essentially had nerve damage/ neuropathy that this would behave like any other neuropathy in your body and get worse over time along with muscles getting weaker and function would decline. Thanks for your response- I definitely see this is very individualized and everyone will have a different experience.
Mimi said:
I just skimmed over the article, but I can tell you that it speaks predominantly of TNO Trigeminal Neuropathy ( injury to the neurons within the trigeminal nerve) Not to be confused with TN 1 or ATN ( TN2)
In regards to progression of TN or ATN (1 or 2) each of us individually may share similarities, but our journeys with TN our unique. I have had bilateral TN since 2002, after years of remission, one side came back and has remained managed by meds, and the other side got progressively worse...The pain increased, as well as the locations of where I felt them, and triggers increased.
TN can be progressive, PAIN wise, and tends to not respond as well to medications which in turn affects quality of life.
Mimi
I think the most important thing is to not overthink what is happening to you. I know it may not be helpful, but it is really the best strategy for not giving up. Life still has plenty of good things in store for you, and it is crucial to see that to not get depressed.
Tineline, I completely agree with you. It’s just very difficult for me to think positively. I am doing everything in my power to continue doing the things I want and need to do. I feel like it is very important (for me personally) to not quit working or socializing or going to the gym. It’s what is keeping me from falling into a deep depression. That and a lot of prayer.
Tineline said:
I think the most important thing is to not overthink what is happening to you. I know it may not be helpful, but it is really the best strategy for not giving up. Life still has plenty of good things in store for you, and it is crucial to see that to not get depressed.
Liz, I am glad to hear that.I do that, too. Just make sure to adjust to your pain - for me, although certain things feel like a loss, I try to not mourn what I can no longer do. It keeps me flexible, so that I don't feel that it has beat me. I can no longer watch movies or Tv, which I relied on for relaxation until recently. Ok,I would love it if I could still do it, but it has opened my eyes (ears) to podcasts, for instance. The only thing I refuse to do as per now, is to not work. Like you, I like to feel normal. :-)
I have not read the article yet, but I have numbness along the left side of my face, from my eye to my jaw. It is always there, I have learned to live with it as it is better than the pain. When I overwork, or try to talk too much I begin to loose my hearing and my voice. I know then that I have to go right home and rest or I stand a very strong chance of what some here say, "Waking the sleeping monster". My eye seems to be heavier than before TN, it is difficult to explain. I have had my hearing checked by my ENT and there has been some hearing loss too.
My ENT believes my TN,"piggy backed" with Ramsey Hunt Syndrome. My neurologist says it doesn't matter, (she is not convinced I had RHS) she says we need to treat the symptoms. I am on Gabapentin, it has worked from the initial dose, and is the only med that I have tried that takes away the pain, but the numbness is always there.
I have learned that we all seem to have different histories and experiences, I hope that reading mine is helpful Liz.
sorry to hear you're struggling. I have had ATN/neuropathic for 2 and half years now and I have read a lot of academic articles but its the first time I've read about eyesight and hearing being affected. It's very curious. I don't have any numbness myself and the only numbness accompanied with pain that I have read on here from others is AD (anesthesia dolorosa) which I think can occur as a result of a failed surgical procedure.
I've been very lucky that my meds worked almost straight away and Ive been living my new normal with a bit of pain but still doing the things that I did before. I still travel, exercise, go out with friends etc. and my eyesight and hearing are perfectly normal. So know there is definitely hope in finding the right meds that work for you. I know its really hard but it helps to not think about the future so much, focus on the now and getting yourself through a hard patch. Feel free to message me anytime. Also I would recommend you ask Red Lawhern about the article I think he would be able to give you a better answer and I would also be interested in hearing what he has to say. Hang in there!
I had TN for 6 years total. 5 of those years it was thought to be a tooth condition... during the last year, as I went through doctors to try and "cure" it, it progressed, as it had been doing for years already.
I tried doing massage and acupuncture and all those other remedies because I thought brain surgery was TOO BIG. During those months, the pain triggering so much and me not wanting to stimulate it - I tried moving my jaw as little as possible. The pain tired out my muscles so much that the acupuncture and massage were helping the muscles - because yes, they were so tight and so tired, but it did nothing for the TN. Only helped my muscles to survive it.
During that time I was unable to brush my teeth, eat, talk, even salivating caused an attack.
I finally got the brain surgery and have been perfectly me again ever since. I don't have a metal plate in my head - just an acrylic patch, much like the filling in your teeth. I have a tiny scar. That's all that's left of my condition. I am happy. I am healthy. I am med free. Every once in a while , now, when I go to take a bite of food - my jaw won't open all the way. It locks just a centimeter open, which is what I taught it to do so it wouldn't set the pain off... and now, it's a learned position for my jaw. When that happens, I close my mouth and open it again and it's fine. so odd... I know it will grow out of doing that eventually. I'm only 12 weeks out from operation. I hardly think on it any more.
Please - talk to my Dr. Dr Clyde at eBrainMD.com I went to so many doctors here in Miami... round and round while they all told me something different. This doctor is the only one who knew what he was talking about - and I had no trouble whatsoever getting in to see him. It was first class service!!