Watching a Meningioma Brain Tumor

Hi, @cathys – I would like to add my welcome to Connect along with @lisalucier and other members. I'm glad to hear that you are advocating for your adult daughter as I know it must be difficult for her as well as you. I'm wondering if she has been treated by Mayo Clinic. If not, it would be an excellent choice for a second opinion if the neurosurgeon says it's not the problem and the neurologist doesn't know what the problem is. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The
contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

If found some information that may be helpful.

Meningioma Diagnosis & Treatment - https://www.mayoclinic.org/diseases-conditions/meningioma/diagnosis-treatment/drc-20355648

PubMed - Multimodal Treatment of Parasagittal Meningiomas: A Single-Center Experience
-- https://pubmed.ncbi.nlm.nih.gov/28156245-multimodal-treatment-of-parasagittal-meningiomas-a-single-center-experience/

Hope this helps...

Hi, @cathys - welcome to Mayo Clinic Connect. That is difficult to be feeling like you are being passed back and forth between the oncologist, neurosurgeon and neurologist. Seeing your adult daughter struggle with pain, numbness, double vision and dizziness must also be hard, as her mom.

I'm hoping other meningioma patients or their loved ones here in this discussion will have some thoughts, suggestions and support to offer as you support your daughter. Please meet @deblee @robinem @pegorr @sanderjakidd @averagewoman and others here. I'd also like you to meet @johnbishop.

Is your daughter working at this time? If so, how is that going with her symptoms?

My daughter had a medulloblastoma at the age of 7 with resection, chemo, and radiation. She is now 29, a college graduate and struggling. This summer they found a parasagittal meningioma. It's small but it has grown from 1.5 to 1.7. She is having many symptoms. Ever since July, the left side of her body is numb and painful, along with the left side of her face. She struggles with headaches, dizziness, double vision sometimes. Many days she is not able to drive. The neurosurgeon says the meningioma is not the problem. The neurologist doesn't know what the problem is either. I think we need to get another opinion. Her quality of life is getting worse. I feel like she gets passed back and forth from the oncologist to the neurologist and the neurosurgeon. Suggestions or Thoughts? We are in South Florida.

My husband has atrial fibrillation but no meningioma. He had a stroke 3 years ago. He eventually found out it was because of a-fib. He is on xarelto and sotolol. Over the past 3 years we have learned a few things about a-fib. There is a strong correlation between sleep apnea and a-fib. My husband can’t drink more than one to two beers a day or he will go into a-fib. Stress while watching his favorite sports teams can cause him to a-fib. It took a while for us to figure this out. He has been stable for the past year with only one a-fib event. He has to be diligent about taking his medication at the same time every day. His medication was adjusted and changed a couple times to achieve success. He had a cardio version a couple times. My husband was extremely fortunate to have his stroke in his occipital lobe of his brain. He lost some peripheral vision at first but gained it back as his brain healed. I wish you luck on your health journey. This doesn’t answer your question about bleeding and your meningioma but it may be useful to prevent a-fib.

@alex3l, I think I would do the same. Hoping all goes well for you.

Thanks John. Your citations are helpful. The article by Maiuri et al. in Current Research in Neurology and Neurosurgery was quite interesting. Basically brain tumors sometimes bleed. In their series it was at about the same risk off or on anticoagulation. One thing for sure, with my age and other risk factors, afib definitely puts me at increased risk for thromboembolic stroke. So I'm going to do it. They are going to try to cardiovert me in a couple weeks. If that produces a permanent remission in the afib, I can hopefully downgrade the anticoagulation.

Thanks Lisa. I'm not sure how this discussion group works e.g. meninigiomas vs watching meningiomas, I'm not even sure that I am replying right. Yeah, it was pretty shocking meningioma on MRI Thursday and the next day atrial fib on an echo. The neuro surgeon I saw at Stanford didn't know about an increased risk of the meningioma bleeding on anticoagulation. The cardiologist asked some Stanford neurologists and neurosurgeons and told me that the consensus was that it is OK to anticoagulate meningioma patients. I pick up the med tonight. I'll ask the pharmacist. One thing for sure, there is a definite risk of a throboembolism to the brain from afib, so I'm going to do it. They are going to try to cardiovert me in a couple weeks and if it is successful, I may not need long term potent anticoagulants. Unfortunately cardioverion often fails or is temporary.

Hi @alex3l, I found an article on Google Scholar (https://scholar.google.com/) that may be helpful.

Current Research in Neurology and Neurosurgery -- Hemorrhage from Brain Tumors during Anticoagulant Therapy (PDF)
-- https://www.somatopublications.com/hemorrhage-from-brain-tumors-during-anticoagulant%20therapy.pdf

Here is a link to the search results. You may find other articles with more information that is helpful:
-- https://scholar.google.com/scholar?hl=en&as_sdt=1%2C24&as_ylo=2019&as_vis=1&q=meningiomas+%2B+anticoagulant+safety&btnG=

Hope this helps!

I do not know anything about anticoagulants.

That does sound hard to have a meningioma and afib discovered all at once, @alex31. A lot to process at the same time. Since you were talking in your second post about following, or watching your meningioma, instead of immediately intervening, I moved your post here where you were posting before where others are talking about watching a meningioma.

Hoping that some other members here and from other discussions may know something about anticoagulant safety while you have a meningioma and whether it could prompt bleeding. @johnbishop may have some thoughts for you, as may @deblee @sanderjakidd @averagewoman @pegorr. They may also have had experience with the decrease in the sense of smell you are talking about.

Have you gotten a chance to talk to the pharmacist about your concerns related to the anticoagulant and the meningioma that was discovered, alex31? If so, what did he or she say?