I had my 6 month appt with my MS doctor. We reviewed the MRI that was done last week. I've had some growth in my lesions, but otherwise stable. Then, he tells me I have a schwannoma at the base if my skull. It's benign, but inoperable due to it's location. Has anyone ever been diagnosed with this type of tumor?
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Originally posted by kittysmith View PostI had my 6 month appt with my MS doctor. We reviewed the MRI that was done last week. I've had some growth in my lesions, but otherwise stable. Then, he tells me I have a schwannoma at the base if my skull. It's benign, but inoperable due to it's location. Has anyone ever been diagnosed with this type of tumor?
I'm not familiar with the schwannoma tumor.
Glad to know that it is benign.
Will it cause any type of symptoms?
Hopefully not.
Take CarePPMS for 26 years (dx 1998)
~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~
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Originally posted by kittysmith View PostCould one of the mods please remove this thread? It seem to be irrelevant and uninteresting.
Would you mind if this thread is up for a little while longer, in case others have had this experience with the scwannoma being found on MRI?
The board traffic is kind of light lately.
Thanks!
Take CarePPMS for 26 years (dx 1998)
~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~
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Hey kittysmith,
I am sorry you have a new diagnosis. I am unfamiliar with it. I wanted to ask questions, when I first saw, but wasn't sure aopropriate. If not, please ignore below.
Did your doc give you any info on it? Does it cause you symptoms and if so, can you differentiate from MS? Was this new from prior MRIs or just first time noted?
I have had incidental notes on MRIs, but minor. I am sure this was a tough one to hear.Kathy
DX 01/06, currently on Tysabri
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Tumor
My MRI in February of this year showed that I have a vestibular schwannoma. It is in my left ear canal. Also inoperable. Mine has not increased in size since then( new MRI last month to monitor). Some Dr also call it a neuroma. I was told I could have radiation to reduce the size if it becomes too large. But due to the location of mine it would cause permanent loss of hearing in left ear.
Also due to location mine can also affect my balance since it is sitting on the vestibular nerve. They are very rare. Most people DX with them do not have surgery or radiation and just monitor for growth. Also my ENT said that it is becoming more common for MRI to pick up small ones now because the machines used now are clearer.
So for me it just monitor . Most grow very very slowly. I think statistics say less that 1mm per year. Which is less than the thickness of you fingernail.
Julie
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Originally posted by kittysmith View PostI had my 6 month appt with my MS doctor. We reviewed the MRI that was done last week. I've had some growth in my lesions, but otherwise stable. Then, he tells me I have a schwannoma at the base if my skull. It's benign, but inoperable due to it's location. Has anyone ever been diagnosed with this type of tumor?
Have you thought about seeking out a forum that has discussions of schwanomas, and probably a lot more info about that kind of tumor. I'm not implying leaving MSWorld, just also frequent a message board where the folks have a lot of info on that type of tumor.
I have neuromuscular scoliosis. And though caused by MS, not many folks on this board are familiar with the subject, so I've asked questions on a scoliosis board. I did the same thing when I had questions about an arrhythmia that many folks have, just not a lot of MS patients, so I sought out a SVT board to get more answers.
Here's hoping you get all your questions answered.
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Hopefully it won't cause you any issues. I have heard of it but don't have any specific information. I wonder if this is one of those things, like my thyroid nodules, that wouldn't have been diagnosed if we weren't getting MRIs due to MS?
Here are some resources if you are looking for more information:
Organizations Supporting this Disease:
American Brain Tumor Association
8550 W. Bryn Mawr Ave, Ste 550
Chicago, IL 60631
Toll-free: 1-800-886-2282
Telephone: +1-773-577-8750
Fax: +1-773-577-8738
E-mail: info@abta.org
Website: https://www.abta.org/
Social Networking Websites:
Visit the Schwannoma Survivors & Schwannoma Fighters group on Facebook.
Organizations Providing General Support:
American Cancer Society
250 Williams Street NW
Atlanta, GA 30329
Toll-free: 800-227-2345
Website: http://www.cancer.org
All above from:
https://rarediseases.info.nih.gov/di...767/schwannomaHe is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
Anonymous
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Thank you
Originally posted by Jenaw35 View PostMy MRI in February of this year showed that I have a vestibular schwannoma. It is in my left ear canal. Also inoperable. Mine has not increased in size since then( new MRI last month to monitor). Some Dr also call it a neuroma. I was told I could have radiation to reduce the size if it becomes too large. But due to the location of mine it would cause permanent loss of hearing in left ear.
Also due to location mine can also affect my balance since it is sitting on the vestibular nerve. They are very rare. Most people DX with them do not have surgery or radiation and just monitor for growth. Also my ENT said that it is becoming more common for MRI to pick up small ones now because the machines used now are clearer.
So for me it just monitor . Most grow very very slowly. I think statistics say less that 1mm per year. Which is less than the thickness of you fingernail.
Julie
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Thank you all for your concern and kind words
Thank you all for your messages. My doctor reassured me that he's not worried about it. Easier said than done. Lol. I posted here mainly because the tumors form around the nerve sheath and it almost sounded MS related. I belive it was just an incidental finding during my 6mo MRi.
You guys are the best.
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kittysmith,
That sounds like quite the news to get from your doc without getting a lot of information about it! Bless your heart!
They did tell me I had “mild cerebellar tonsilar ectopia.” Lots of Googling and conversations with a couple radiologist friends told me this was nothing to worry about.
*sigh*... MS is enough. I genuinely hope you don’t have to deal with any other diagnoses in your lifetime.
Take care,
smalltowngirlDX 3/2018; started Ocrevus 3/30/18 (EDSS 2.5)
"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."
- 2 Corinthians 4:16
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