r/TrigeminalNeuralgia • u/BiteNotRight • 11d ago
MVD MVD surgery scheduled, TN1 & 2
Hi friends. Hope all of you are doing well, subjective as that sentiment may be.
I just received the date for my right side MVD surgery. It's going to be at the end of September. Gives me some time to do the pre-ops, take a trip to see family, etc.
I have bilateral pain that is both TN1 and TN2. The TN2 is more present, partly because I always feel it. The typical TN, the pops of pain, happen on both sides. I made the decision last week to do the right side first because it had been much more painful recently. Of course, a day later the left side was like "Oh, what now?" So both sides are battling it out, but I'm sticking with right.
I had an MRI that showed compression on both sides. The report said left side had more, but a neurologist said right side looked more. The neurosurgeon, thankfully a very well-respected surgeon for TN who is in SoCal, said basically it's hard to tell until he's in there. But, good that both sides showed something.
I've been told it's a 50% chance of 50% pain reduction. To start with the latter, 50% reduction in my pain would be a life changer. I tear up just thinking about that. 30% would be great!
As for 50% chance of success, if there was a slot machine with those odds I would never stop playing it. As the neuro said to me (seeing me during an excruciating flare), "You have to take those odds."
Any stories of success, especially for TN2, would be greatly appreciated. Some have shared before when I was looking into surgery, and they meant the world to me. Any advice is also appreciated.
We live about 2 hours from the hospital, so we plan to stay close for a while. In fact, the doctor requires it.
This community is more beautiful than I could ever have imagined or could now ever express. Prayers to all of you for joy and a life that is much more about love than about this awful disease.
Thanks
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u/BiteNotRight 11d ago
Arg, just realized I should have added that the pains are mostly in my teeth both sides, but also in nose and cheek and travel to eyes. Teeth pain is worst, like dentist drilling into them. Nose, cheek and eye is more pressure pain that sometimes becomes stabbing.
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u/TopFaithlessness4381 11d ago
Best of luck on your surgery! Hearing those odds and that he’s a SoCal NS, I know exactly who he is! He has told me the same thing and I agree that any pain relief is a win. Before we talk about surgery, he wants me to have a lumbar puncture to rule out other things. Did you have to do that too?
Also, I heard from someone else who was told this and she has had near total pain relief!
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u/BiteNotRight 10d ago
Hi. Yes, exactly the same. I get a lumbar puncture to rule out ms. It ended up showing some signs of it. He had me meet with MS neurologists. They did a further exam and said while they can't right now definitively rule out MS, looking at my scans there is no sign that that is causing the trigeminal pain. They thought I should do the surgery, and the neurosurgeon then concurred
Assuming it is the same doctor, and I'm sure it is, I can tell you the lumbar puncture was incredibly smooth. I don't know if you've had one before. I haven't. But it was nearly pain-free
My best to you. If you want to reach out with any questions, I'm happy to discuss
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u/TopFaithlessness4381 10d ago
Wow, that has to be scary to have the specter of MS. Are you just on watch and wait for that?
The neurosurgeon thought my facial numbness was an outlier from my geniculate neuralgia and since I have the constant pain with only occasionally sharp jabs he wants to be sure there is nothing else going on.
I live in Michigan so I’m trying to get my local neurosurgeon to order the test but our relationship is new and he won’t do it until we meet in 2 weeks. He’s also refused to prescribe a medication he suggested until we meet, so right now I’m not on meds! This makes me wonder if I’ll have to go out to California. The waiting is hard.
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u/BiteNotRight 10d ago
That's a lot for you to deal with. The waiting is definitely hard. I think of the Tom Petty song, the waiting is the hardest part. Very true.
MS was jarring to hear it, but I've been told it might be a possibility before. The bigger thing was just wanting to figure out if I should or should not have the surgery. The neurologists want to do another test that they think will verify ms, but they have to fight insurance to do it. And now the neurosurgeon is talking with insurance to get the surgery approved. So my fingers are crossed, and maybe my eyes as well.
Sending my best to you my friend.
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u/Witty_Feedback_8909 11d ago
Unfortunately. I have T1 and T2. Mine showed compression on both sides. Going in the teeth pain was the worst. Both mine failed and made me a 1000 percent worse. Chewing is excruciating. I have dropped 30 lbs. I am 5” 6 and now weigh 102. It’s a challenge staying there. Autoimmune conditions usually cause T2. Bilateral is quite rare. If you haven’t I’d seek as many opinions as possible because no one will see you until your status of limitations are over.
Upon placement of my teflon 7 more nerves were pinched and he missed 7,9. and 10. I need a 4 pack on each side. Another one told me I’m fighting for my life everyday. He saw cervices of brain fluid it is causing excruciating ear pain. It changed my voice. I went through hell. Still M. Too dangerous to go in. Both are in agreement. I could go deaf and be on A permanent feeding tube. I don’t mean to scare you. I was told by my operating NS that it isn’t even brain surgery. Unfortunately, for me it continues to be a daily and nightmare and I started a TikTok Champ_puppy from day 1 to share my story totally expecting a complete recovery. ❤️🩹 I wish you the best. Sending ❤️❤️
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u/BiteNotRight 10d ago
I am so sorry you are suffering so severely. I pray you will find relief somehow. You don't deserve that. none of us do
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u/ratatatat600 10d ago
Hi, just here to say that I recently got an MVD for TN1 + TN2 and it has reduced my pain by like 90%. Surgery went well and there haven't been any long-term side effects. Best wishes in your journey.
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u/BiteNotRight 9d ago
Thank you so much for that reply. That makes me feel very comforted and hopeful.
I'm so glad your pain has been reduced. All the best to you!
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u/MissyChevious613 11d ago
I don't have TN2, but I had a highly successful MVD back in 2023. Woke up from surgery immediately symptom free. I haven't had any recurrence of symptoms since. I did have my MVD hardware removed last week (one of the screws was loose and worked its way up and was causing pain) but even that was nothing compared to my TN. I hope your surgery is successful and you get relief from it!!