My wife has been suffering for ATN for a number of years. She had MVD last year. The procedure worked wonderfully for 8 months, but a few months ago she had some dental work done, and the symptoms returned more severely than ever. It has been a very trying time. I am desperate to try and help her. No one but those suffering from this disease can understand what it is like, and I would greatly appreciate input from members regarding what they have found their loved ones can do to best help? What well intentioned actions are actually counterproductive?
Seeing as MVD has stopped working, this is likely now a very long term change in lifestyle. I would deeply appreciated hearing from everyone, including those who are long term sufferers; have you been able to maintain some sort of quality of life, and if so, how? This also may now become about pain management (for my wife, it is severe, both the electric shocks, lasting up to 20 minutes, as well as the burning that goes on for days). Is anyone using CBD and does it help? If so what kind of dosages? Over time, do the benefits fade similar to other remedies?
My wife, along with so many on this forum, are among the strongest people I have ever associated with. I am hoping there is some way I can add to that strength.
I am pro neck as a cause of TN, in many cases. Your wife previously had successful MVD, and now has a return of her symptoms after a dental procedure.
Whilst I don't know the dental procedure, and recognising invasive procedures can be a cause of TN, the fact that she was previously helped with MVD would seemingly discount a facial trigeminal cause, and the fact it is a very rare disease, I would discount dental invasive as the cause. I would be leaning towards trauma, however minor to the cervical spine/ neck during the procedure, especially if she already has a cervical problem e.g. spondylosis, stenosis or even coexisting headache disorders.
I just had MVD surgery with dr Alksne at UCSD 3 days ago. Please, before you look at anything else send a letter and a copy of your wife’s brain Mri to him. This man is a legend and has performed over 2000 MVD surgeries over 40 years. He does not use Teflon stuffing which can cause rejection problems. He uses a swath of the dural lining to gently pull the blood vessel from the nerve. I am a concert pianist with perfect pitch and I was terrified of losing my hearing and my voice. I am 3 days post op in the ER. Dr Alksne gave me my life back. I ate a cracker today without any pain!!! If dr Alksne sees a vessel on your wife’s nerve he will personally call you and take the case. What’s sad is that he says most radiologists including mine did not see it at all!!! Get your wife’s Mri to dr Alksne ASAP! He needs the actual films of her brain with contrast. He will literally call you as he is reading them!
He is so revered by his peers here at UCSD there were doctors of every kind in the gallery watching the legend of MVD work his magic!!! Email him at: ■■■■■■■■■■■■■■■■ and tell him about your wife. The sooner she gets it fixed the better chance she will have at a life without to for good. PLEASE don’t wait. My husband did this for me and he saved me when I couldn’t save myself! I am all the way better!!!i freaking love that man! You are so amazing And your wife is so lucky to have you.
Just listening has been very helpful to me, I am a single 25 year old who was just starting life on my own when ATN hit me hard. I am 15 months into my "new life" and in that time I have tried 5 medications with terrible side effects, quit my full time job that I loved, and moved back in with my parents. Just having someone around to listen quietly when I loose it and sob for an hour helps. Sometimes gentle pats on my back and a distraction are what I need. My mom has gotten really good at spotting facial expressions and gestures that mean I am in pain, but trying to hide it. I have a tendency to push myself to hard, and she gives me reminders that I need to rest, and accept that I can't do it all, and that is ok, because this is freaking hard! My dad is great for hugs, and finding ways to laugh when I need it. I think every one of us is going to need slightly different things, but I think we all feel like we are burdens on our friends and families. Any time you can tell your wife that you still love her, and value her, and need her, even with her pain, and troubles I think it would help.
Thanks Erika and all for the inputs. I hope to hear more in the future.
Since my wifes TN has returned post MVD, I have been trying to understand what could be a possible cause. I am coming to believe more and more that TN is the result of nerve damage that can have happened a number of ways.; vascular compression issue, viral infection, spine/neck damage (I read an account recently of a man who began suffering TN after spinal surgery; the surgeon had accidentally severed the Tregiminal Nerve way down at C5 of his spinal cord). There are also multiple accounts of TN rising from dental work, which could indicate nerve damage up near the teeth. It is also difficult to ignore the similarities between TN and autoimmune diseases. In short...TN could simply be pain expressed as damage to ANY part of the trigeminal nerve; from the root of a tooth down to the cervical region of the spinal cord.
I am in the process of looking for a neurosurgeon who is willing to challenge the status quo...looking at the entire nerve, understanding the patients history, and not simply fall back on drugs and MVD. There is an answer out there...it may not be the same answer for everyone, but I strongly believe we need to challenge accepted practice.
If anyone knows just such a neurologist, please let me know. I am more than willing to jump on a plane.
Your wife is one very fortunate lady in having you, wishing you and your family all of the best for the future.
Sean said:
Thanks Erika and all for the inputs. I hope to hear more in the future.
Since my wifes TN has returned post MVD, I have been trying to understand what could be a possible cause. I am coming to believe more and more that TN is the result of nerve damage that can have happened a number of ways.; vascular compression issue, viral infection, spine/neck damage (I read an account recently of a man who began suffering TN after spinal surgery; the surgeon had accidentally severed the Tregiminal Nerve way down at C5 of his spinal cord). There are also multiple accounts of TN rising from dental work, which could indicate nerve damage up near the teeth. It is also difficult to ignore the similarities between TN and autoimmune diseases. In short...TN could simply be pain expressed as damage to ANY part of the trigeminal nerve; from the root of a tooth down to the cervical region of the spinal cord.
I am in the process of looking for a neurosurgeon who is willing to challenge the status quo...looking at the entire nerve, understanding the patients history, and not simply fall back on drugs and MVD. There is an answer out there...it may not be the same answer for everyone, but I strongly believe we need to challenge accepted practice.
If anyone knows just such a neurologist, please let me know. I am more than willing to jump on a plane.
If someone finds this sort of doctor I think MANY of us will be hopping on planes. But I will keep you posted if I stumble across one.
I also think that there is way more to the causes and potential cures to TN than the current explanations cover, especially where ATN is concerned. I have seen a very high percentage of ATN people with a history of dental procedures. I strongly believe that mine may have initially been set up when I had my wisdom teeth removed in 2010, as I had numbness and tingling troubles healing from that, and some unknown catalyst started the pain four years later.
If I were ever to marry rich, or win the lottery, etc, I would poor all my money into sponsoring research into other possibilities that don't seem to be considered at this time. I watched a TED talk about Neuralgia and the effects of that kind of pain, he was talking about an arm for example, but I was appalled that in all my reading and doctor trips no one had explained to me the actual process of Neuralgia, and what is happening in the brain and nerve. TN seems to be in a separate category in peoples minds from other neuralgia, which seem to have "any damage to the nerve" as the cause, not "Blood vessel compression" specifically. I find that odd.
Here's hoping we track down that wonder doctor ASAP!