Watching a Meningioma Brain Tumor

Posted by robinem @robinem, Feb 8, 2018

I've just been diagnosed with a 2cm meningioma tumor on the right front of my head. I am 59 years old and the surgeon has told me I will need to "do something" with my tumor someday since I am younger. What is the benefit of waiting?

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@alex3l

I have a couple questions. My doctors (most of them) are practicing out of a renowned West Coast University medical center. I was disappointed by the neurosurgeon I consulted there. Another of my doctors said that I should get a second opinion from "The Supreme Court of Medicine," the Mayo Clinic. Since the meningioma I am "watching" requires skull base surgery, I am wondering who are Mayo's very best skull base surgeons? How many of these procedure have each of them done? How old are they? How can I get this information and data? Thanks.

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@alex31 -- Here are a few links that might help you get some answers.

Mayo Clinic -- Comprehensive Skull Base Clinic:
-- https://www.mayoclinic.org/departments-centers/comprehensive-skull-base-clinic-in-minnesota/overview/ovc-20426883

Mayo Clinic Rochester - Otorhinolaryngology (ENT)/Head and Neck Surgery Doctors
-- https://www.mayoclinic.org/departments-centers/ent-head-neck-surgery/sections/doctors/drc-20424100?locations=Rochester%2c%20MN#9f586ff3a6124d46a257480316484847

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I have a couple questions. My doctors (most of them) are practicing out of a renowned West Coast University medical center. I was disappointed by the neurosurgeon I consulted there. Another of my doctors said that I should get a second opinion from "The Supreme Court of Medicine," the Mayo Clinic. Since the meningioma I am "watching" requires skull base surgery, I am wondering who are Mayo's very best skull base surgeons? How many of these procedure have each of them done? How old are they? How can I get this information and data? Thanks.

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@lisalucier

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?

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Thank you @lisalucier for your response. My daughter was working part time. But this past July she had a stroke like event and was hospitalized. Since then she has been struggling with all these problems. The doctors don't think she had a stroke but don't reallty know what the problem is. That's when they discovered the meningioma, which is small but has grown since then. I know her situation is complex because of her prior history of a brain tumor and radiation. Hopefully, a second opinion will shed some light on her situation.

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@johnbishop

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...

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Hi, @johnbishop - thank you for the links. I will check them out. We are considering a second opinion at Mayo. We are gathering her medical information so we are ready to do that. We just hope that things don't escalate before we can get in.

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@cathys

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.

Jump to this post

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...

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@cathys

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.

Jump to this post

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?

REPLY

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.

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@alex3l

<p>I have olfactory groove meningioma. 75y/o male. Also heart disease (atrial fibrillation) requiring anticoagulation. One option suggested by neurosurgeon is to follow, since minimal symptoms. Asked neurosurgeon if following on anticoagulation could allow meningioma to bleed. (Possible brain hemorrage) Answer was "I don't know." Does anyone know about following menigiomas safely while on anticoagulantss? Any references? Thank you, Alex3l</p>

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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.

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@alex3l

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.

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

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@johnbishop

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!

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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.

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