AN with Trigeminal Nueralgia

Hello I have just been diagnosed with at AN and also have Trigeminal Nueralgia as the Tumor is pressing on a facial nerve I also have a sensation on unsteadiness. I usually have a very busy lifestyle. Has anyone else experienced Trigeminal Nueralgia with an AN I am in lot of facial pain eletric shock and burning pain. Feeling very anxious and depressed have anyone else had these symptoms with AN or anyone just had surgery. Any advise is appreciated

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  • Hi,

    That sounds horrible, and it is probably keeping you awake too... and fatigue makes it worse. I do get some trigeminal symptoms from my AN, but mainly tingling. But I did have trigeminal neuralgia for weeks after some dental work. Not nice. Have you spoken to your GP about medication to reduce the neuralgia pain? The meds won't take it away completely, but should reduce the pain to a level where you can get on with things without being focused on it all the time.

    Anxiety, depression and insomnia would make the pain worse, so it would also be worth talking to your GP about managing these. That may or may not require medication. Improving these symptoms will probably improve your unsteadiness too.

    I hope things are better soon. Let us know how you get on.

  • I did not have that but a friend did but after she had her op. I think she has tried various treatments

  • I can't comment personally but did read about a similar situation on ANA very recently - I've posted below a little of the thread....

    quote: "After 12 years of watch-and-wait, since my tumor is pressing on the trigeminal nerve and causing me a level of pain I can't live with anymore, I am choosing all the possible side effects that could result from a retrosigmoid surgery. "

    The surgery is scheduled for December 12 at House in LA.

  • Very good luck for tomorrow I am sure all will go well and your symptoms will hopefully subside or disappear x

  • the story continues....

    "My tumor was diagnosed 14 years ago, and I thought we had a deal. I wouldn't bother him and he wouldn't bother me. Well, he reneged on the deal and started pressing on my trigeminal nerve, just to get attention. Little bastard. So I flew to LA last week, had my pre-op with Dr Stefan, and Monday morning got my revenge. Sadly not completely, but well enough.

    I may be 74, but I'd rather keep my facial nerve and balance as intact as possible. So I asked Dr. Schwartz if he could just carve out the chunk of tumor pressing on the nerve and also perform an MVD (micro vascular decompression), which is when they put a little piece of Teflon between the trigeminal nerve and whatever is irritating it. That's exactly what he did. The rest of the tumor was pretty well wrapped around my facial nerve and still is.

    So what are the odds it will grow and do its thing again? I don't know. It took 12 years to grow from 1.4 to 1.7, so is considered slow growing. I'm doing really well in recovering, but would not like to go through it again. My husband and I are at Seton and will go home the day after Christmas. My TN pain is gone, I'm walking all over the place and not staggering, my face is the same as it was, and maybe I'll die before trouble returns! "

    "According to Dr. Schwartz, some or even most of my tumor was left intact, as it was largely wrapped around the facial nerve. Growth of ANs can be sporadic--it may now simply lie dormant, or it could conceivably have a growth spurt. If that happened, he said the next step would be to burn the nerve with radiation. I'd accept the resulting facial numbness over the intense, electrical pain of trigeminal neuralgia. But for now I'll take what I've got, namely the expected post surgery pain by itself. That is getting better by the hour!"

    I hope that this may help if you're in a similar situation.

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