Trigeminal neuralgia worse 10 years after MVD now tentorial meningioma

Posted by phdkatz58 @phdkatz58, Apr 7, 2022

I had MVD surgery for trigeminal neuralgia 10 yrs ago. The surgery was partially successful for a while although I continued to have terrible eye and head pain similar to brain freeze only on my right side. My tics became more like hemifacial spasms until I began taking 8 mg of clonazepam daily. I also had 2 PEs 4 days after the surgery and a partial lung infarction in my left lobe which nearly killed me. I now have pulmonary arterial hypertension as a result, as well as severe mitral valve regurgitation for which I am having open-heart surgery to repair in 2 weeks. My TN symptoms have started getting worse than ever and I have nearly constant headaches primarily on my right side. I was just diagnosed with a calcified supra-tentorial meningioma on the right side which may be the cause of my headaches and worsening of trigeminal neuralgia. I am in constant agony and in despair. The neurosurgeon where I live said that I need to consult with an institute that specializes in brain tumors. I can't afford to travel and don't know what to do. I only know that I can't bear this pain much longer.

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drigg97 | @drigg97 | Apr 7, 2022

Hope you get answers and relief soon….

phdkatz58 | @phdkatz58 | Apr 7, 2022

In reply to @drigg97 "Hope you get answers and relief soon…." + (show)

Thank you, so I. I'm actually thinking of moving to Oregon on the southern coast where I can be at peace, walk on the beach, watch the whales swim by while crying their haunting songs then spending time in the redwoods where I scattered my daughter's ashes 17 years ago. I don't know how much fight I have left in me at this point. I know that they will allow you to end your life with dignity there if you have a fatal disease. It seems that I now have 2. Acceptance is what I need to find because I have 9 beautiful grandchildren whom I adore and wanted more time to make memories with. I don't want their memories of me to be contaminated with sights of me sick and dying. I just want so much to encourage them to be kind to others always, to speak to people while watching their smiles and the joy in their eyes. No texts convey that kind of humanity and fill your own heart. They have a difficult path ahead, I had hoped to be there for them. I'm a scientist and fear a darkness that will push us backwards. I am one who could have taught people to survive and win a new world of hope. that's so frustrating to know that all of my knowledge will be lost to the world but the Elon's and Bezos will fly around in their ships preparing to escape the chaos and destruction that they engineered as they amassed their wealth.

I'm sorry for being so morose. Go look at the night sky and try to see the Northern lights. They are stunning. I saw them as a child in northwestern Iowa on the farm where I grew up.

I will live to fight/endure another day...

Professor M

Amanda Roe | @amandajro | Apr 11, 2022

Hello @phdkatz58 and welcome to Mayo Clinic Connect. First, am very sorry to hear of all of your health concerns. So many can truly take a toll on a person. It's great, actually, that you are seeking to connect with others who may provide you some experience-sharing and support.

After having read your original post in this discussion, I couldn't help but wonder if your Cardiologist and your Neurosurgeon have made any connection between your heart symptoms and your increased facial pain since high blood pressure can cause intense facial pain? Do your doctors communicate across departments like ours do at Mayo Clinic?

earringsbylulu11 | @earringsbylulu11 | Apr 13, 2022

I had chest pains. I have had many EKGs and they have determined that I have Chondritis which is similar to a heart attack. They also determined because of my screaming and hyperventilating during my post MVD operation my attacks. I have at least three extreme attacks a day, I am losing control of my hands and my arms in balance in my legs. I’d rather have TN have had the MVD operation then have the excruciating pain from the operation I still have TN and along with so many other physical and mental problems

earringsbylulu11 | @earringsbylulu11 | Apr 18, 2022

I am so sorry to hear that you still having pain after your MVD operation. I cannot imagine 10 years after an operation that was supposed to help you. I’m experiencing the same thing but it’s only been just over a year. The problem I am finding I cannot find a doctor to help. Sending prayers and hugs and hoping you find an answer

windyshores | @windyshores | Apr 19, 2022

What kind of attack are you having three times a day? Of trigeminal neuralgia type pain?

It sounds possible that the meningioma is causing some of those facial symptoms. It seems that surgery and possibly radiation (depending) might bring relief. I am sorry there is no medical resource nearby for you and hope you can find a way to get to help.

Is less invasive heart surgery not possible? https://pubmed.ncbi.nlm.nih.gov/28843324/ Is there a reason you are having open-heart surgery?

I have chostocondritis from time to time. Yours sounds a lot worse! I also have pain and numbness on the left side of my face. I have had imaging: they suspected an acoustic neuroma, then suggested TN. I have not yet agreed to contrast with MRI or CT. Mine is not agonizing like yours.

I can understand it is hard to keep going with so many problems and obstacles and pain. I hope you can find a way to treatment, the least invasive treatments possible, and continue to teach your grandchildren and others how to live well and kindly.