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Middle cranial fossa tumor symptom question.

Posted by spikeshd @spikeshd, Nov 15, 2023

Hi, 50 M here. I have an unclassified benign tumor that was discovered about 20 years ago asymptomatically when my body stopped producing hormones. It has been steadily growing, and the attached scan is from 2 years ago. I haven't seen a neurologist for 20 years, my GP of 4 years looked at the scan and says it looks fine. I was recently told by my GP that I have stong signs of Autism and he wants me to get tested. Question I have is the symptoms (frustration, social withdrawl, strong visual and audio sensitivity, confusion, memory loss, hearing loss with continuous tinnitus) have been developing rapidly over the last 8 or so years. From what I understand, Autism is suffered from birth.
Does anyone have any idea if this could be related to the tumor, and I would be better off seeking a neurologist? Adult Autism testing is very hard to find where I am, it's all pediatric.
Thank you!

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spikeshd | @spikeshd | Nov 15, 2023

I should add that I've been getting a burning / aching and swelling at the right side of the base of my skull, not sure if that's anything to do with this but it gets really hot when it swells.
Thanks!

REPLY
blessedbyu | @blessedbyu | Nov 16, 2023

Here is my two cents as someone who has a 5cm tumor in the same location at the same age... First, please see a neurologist right away. Second I can't imagine that you are not experiencing symptoms from the tumor, are all of them you described from the tumor... no way to tell. Several of the ones you described I have also experienced. Prayers for answers and healing.

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1 reply
spikeshd | @spikeshd | Nov 18, 2023
In reply to @blessedbyu "Here is my two cents as someone who has a 5cm tumor in the same location..." + (show)
@blessedbyu

Here is my two cents as someone who has a 5cm tumor in the same location at the same age... First, please see a neurologist right away. Second I can't imagine that you are not experiencing symptoms from the tumor, are all of them you described from the tumor... no way to tell. Several of the ones you described I have also experienced. Prayers for answers and healing.

Jump to this post

Thank you, I think I found a neurologist finally. They are booked into the middle of next year though. I’ll make an appointment soon.
Had a focal seizure last night, they happen every few months now. Feel great today.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 22, 2023
In reply to @spikeshd "Thank you, I think I found a neurologist finally. They are booked into the middle of..." + (show)
@spikeshd

Thank you, I think I found a neurologist finally. They are booked into the middle of next year though. I’ll make an appointment soon.
Had a focal seizure last night, they happen every few months now. Feel great today.

Jump to this post

Hi @spikeshd, good to hear that you found a neurologist. If one of Mayo Clinic locations in AZ, FL or MN is an option for you, there is a 48-hour access program for brain tumors. When you call at any of the 3 campuses, you will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-hour Access program.

You're right that autisim testing tends to focus on pediatric care. If you would like to connect with others talking about adult autism, you might like to join this support group on Connect:
- Autism (ASD) support group https://connect.mayoclinic.org/group/autism/

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1 reply
spikeshd | @spikeshd | Nov 22, 2023
In reply to @colleenyoung "Hi @spikeshd, good to hear that you found a neurologist. If one of Mayo Clinic locations..." + (show)
@colleenyoung

Hi @spikeshd, good to hear that you found a neurologist. If one of Mayo Clinic locations in AZ, FL or MN is an option for you, there is a 48-hour access program for brain tumors. When you call at any of the 3 campuses, you will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-hour Access program.

You're right that autisim testing tends to focus on pediatric care. If you would like to connect with others talking about adult autism, you might like to join this support group on Connect:
- Autism (ASD) support group https://connect.mayoclinic.org/group/autism/

Jump to this post

Thank you so much for that information! I really wish I was close to one of the Mayo locations but they are all a long way from me. It’s good to know if things get worse that they are an option.
Thank you for the autism support link also, I appreciate you!

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alhayes1976 | @alhayes1976 | Nov 26, 2023

When I first meet with the neurologist about my brain tumor I remember him telling my husband that with growth my personality could drastically change. I am also an elementary teacher and have worked with several autistic children. Some of my favorite kiddos ever! I would believe that you would have had someone notice autistic tendencies earlier in life. I traveled 9 hours to receive care at Mayo and would recommend making the trip. The doctors are amazing!

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