Author Topic: What accounts for some with few symptoms?  (Read 2858 times)

mac84

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What accounts for some with few symptoms?
« on: January 16, 2019, 11:33:33 am »
I was diagnosed in 2014 and have posted and read on the forum since that time. Just strikes me that so many of us in the W/W either have vastly different levels of symptoms or either some don't acknowledge or recognize them as being from the AN.  What accounts for this?  My AN is 14mm and has remained essentially the same but since the time of my diagnosis my symptoms are manageable and I've kept up the same activity level or more.

But others with smaller AN's seem to suffer more with balance issues, fatigue, wonky head, etc. 

Interesting to see the ways that the AN's affect different people. Age? Personality? AN Location? Lifestyle?
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth! MRI 2 yrs
4/20: No growth! Symptoms stable- MRI 2 yrs

ANSydney

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Re: What accounts for some with few symptoms?
« Reply #1 on: January 16, 2019, 09:14:46 pm »
On of my theories is that it is not so much size but the rate of change in size. When a tumor is growing, it takes some time for central compensation of balance to occur. Also, if the brainstem is impacted it takes time for it to move out of the way. Hearing is in a different category.

Is this why some with large tumors, such as myself, have very few symptoms.

Freelander

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Re: What accounts for some with few symptoms?
« Reply #2 on: January 21, 2019, 01:52:18 pm »
Agreed, the differences in symptoms among cases is strange, and treating ANs is not settled science.  It seems the location of the tumor, such as a position adjacent to the cochlea or facial nerve, influences symptoms as much as size. However, other variables such as diet, exercise, personality, etc. are studied less, probably due to the fact that it is a rare condition, hence, less funding for studies and trials.  There are a number people, on this site and elsewhere, with tiny vestibular schwannomas, e.g. under 6 mm in diameter, that have expressed difficulties leading a normal life, while at least one that I am aware of, had the tumor pressing against the brainstem when diagnosed, and was put on watch and wait, with few discernible symptoms.  The converse of that is also true, smaller tumors fewer symptoms, larger tumors, more problems.  It's all individual.  For me, changes in tumor size [from 6 mm to 13-15 mm (conflicting feedback from last MRI) in the last 3.5 years] have led to a disquieting increase in symptoms, despite maintaining an incredibly healthy diet and active exercise lifestyle for many years prior to and since diagnosis.  I recall reading somewhere that having a stressful career may have some correlation with VS, though can not recall where that may be sourced.  There is simply too much that we still do not understand about this insidious condition, and which treatments to use, and when to use them.   IMHO, one is fortunate to be able to continue to be on watch and wait, with few symptoms.

mac84

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Re: What accounts for some with few symptoms?
« Reply #3 on: January 22, 2019, 09:57:29 am »
Freelander and ANSYDNEY, exactly the thoughts that I had. Wish we knew more and there were more studies.  Just puzzling sometimes.
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth! MRI 2 yrs
4/20: No growth! Symptoms stable- MRI 2 yrs

ANSydney

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Re: What accounts for some with few symptoms?
« Reply #4 on: February 06, 2019, 07:26:48 pm »
I like your perspective Cityview. I wonder if incidental diagnosis should even be considered for treatment unless there are significant symptoms. I like your " I think the body adapts over time"; something worth pondering over.

PaulW

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Re: What accounts for some with few symptoms?
« Reply #5 on: February 21, 2019, 01:41:06 pm »
I think we need to consider what causes the symptoms.
One observation I have made is that symptoms often increase when the tumour reaches 5mm in diameter and starts to compress the nerves and blood vessels that feed the cochlear inside the internal auditory canal. Larger tumours May or may not involve the IAC.
People that don’t have IAC involvement often have larger tumours with less symptoms.

Blood flow to the cochlear.
As the tumour grows it can restrict blood flow to the cochlear.

Just like you can wake up with a numb arm from lack of blood flow, you can have a numb cochlear too. I used to wake up in the morning and my hearing would be poor. As my blood pressure increased my cochlear after half an hour would no longer be numb and my hearing would get better. But while that was happening I would be very dizzy. During the day as you sit up, walk around, your blood pressure changes continually, and with each blood pressure change comes dizziness. You don’t get used to it because it’s a moving target.   Cochlear dysfunction affects the vestibular ocular reflex. It’s the gyroscope for the eyes, your brain can’t addapt. A damaged VOR means you must manually move your eyes, which is tiring!

One day I heard a loud pop in my head, and my hearing got better within half an hour.
My next MRI showed that my internal auditory canal had been deformed by the tumour and was now 7mm in diameter. The tumour had pushed that hard that the bone had been deformed. The extra space available in the IAC meant my symptoms got better.
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

PaulW

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Re: What accounts for some with few symptoms?
« Reply #6 on: February 21, 2019, 01:55:13 pm »
Most people are unaware of the vestibular ocular reflex and how it affects ANers.
For ANSydney.. this Dr is from Sydney and he developed head impulse testing for detecting vestibular problems. People with AN’s and symptoms often fail this test. Losing your VOR is significant.
https://m.youtube.com/watch?v=769hGL2qKTU
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!