Author Topic: Strange Symptom  (Read 2969 times)

JillD4

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Strange Symptom
« on: December 15, 2016, 12:47:29 pm »
I was diagnosed in June 2015 with a 2.1 AN.  I am watch and wait for one year since April 2016 since in April my AN hasn't grown. I am under the care of Dr. Kutz/Dr. Barnett at UTSW Dallas, Texas. I live in Elgin/Austin TX area. I have been watch and wait since then. In June 2015, I started with left sided tongue numbness, tinnitus, hearing loss, sound dropouts, progressing to facial numbness, fatigue, balance issues, grogginess, head fullness (mostly when outside the house) and a revisit from my old friend anxiety. The anxiety is due to my increasing symptoms, not being able to work, people not understanding my situation, etc. Night before last, I had a strange symptom. I was reading and suddenly heard a LOUD exacerbation of sound as I was very relaxed, tired, and about to fall asleep. The sound came from the refrigerator compressor shutting off, a split second of vision loss that came immediately back like turning on and off a light, then a jolt like when one is sleeping and feeling of falling.  I notice certain sounds affect me more. I would call it hyperacousis. Very intense to where I have to leave a room. Sometimes sounds make me jump or startle. Being that the eye, ear, and brain are all intertwined with the AN, my gut feeling is that this is the reason I am so sensitive. It was strange. I am thinking this is due to the AN on the nerve affecting my sound perception and relating it to the brain. Dr. Kutz has not heard of this with an AN.  Yesterday, he  ordered an MRI since I am due for my repeat MRI in a few months.  I had a feeling that during this time of year was going to be when things come to a head (no pun intended LOL!) I am currently waiting on insurance approval which takes a few days. If it happens again or feel worse, my plan is to go to the ER just to get my MRI.  Has anyone experienced something like this? Just curious. Thanks!
Diagnosed June 2015 2.1 AN
Watch and wait until 1/2017

mac84

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Re: Strange Symptom
« Reply #1 on: December 15, 2016, 03:10:34 pm »
Jill, I think sounds bothering us sometimes is pretty common but I believe the answer to your question is in knowing about the anxiety and the fact that you were just about asleep. Anxiety can have your senses all out of whack and the fact that you were almost asleep gave you the jolt. Relax the best way you can...we're all in the same boat!  ;D
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 but hearing deteriorating - MRI 2 yrs
Fitted with Resound Linx 3D 5/18

ANSydney

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Re: Strange Symptom
« Reply #2 on: December 15, 2016, 03:28:59 pm »
Jill, thanks for telling us about your latest observations. I think once you have an AN you have to be very attuned to any symptom, even when it seems unrelated.

You mentioned that the fridge compressor sounded louder one night. Does that mean you could hear better at the time?

Keep us updated on symptoms.

JillD4

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Re: Strange Symptom
« Reply #3 on: December 21, 2016, 04:20:48 pm »
No. Hearing stayed the same. It was like an explosion sound within my head. No pain of any kind. Then vision out and back on like flipping a switch, followed by a whole body jolt that was very intense. It was NOT like when you have a jolt when falling asleep. Magnify that 10x. Talked to doctor today. MY AN grew from 2.1 to 2.8 in 8 months. He said, we need to get it out. Scheduler is calling me next week to schedule surgery. It all feels so surreal that it is finally going to happen. Many feelings at this time. Any support welcomed  :o
Diagnosed June 2015 2.1 AN
Watch and wait until 1/2017

ANSydney

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Re: Strange Symptom
« Reply #4 on: December 21, 2016, 07:42:40 pm »
Jill, yours is an interesting case. A 2.1 cm tumor at diagnosed in June 2015, no growth in April 2016 (10 months) and then growth to 2.8 cm in December.

Your changing symptoms were interesting since it appears to correlate well with your MRI observed tumor growth. The big question is what made a non-growing tumor for at least 10 months, change to a rapidly growing tumor in 8 months. Can you think of any lifestyle changes you made over the past 8 months? When did you increased symptoms occur? Did you get all three MRIs done at the same place?

JML

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Re: Strange Symptom
« Reply #5 on: December 22, 2016, 08:05:44 am »
Jill, what you experienced sounds like something called Exploding Head Syndrome (EHS). You even described it as being like an "explosion". You might want to research it and see if it sounds to you like what you experienced. I would bet that EHS is not directly related to the AN since many people without ANs experience it. Sensitivity to other noises, on the other hand, is something many of us with ANs experience.
Best of luck to you on this journey. One step at a time, you'll get through it.

alabamajane

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Re: Strange Symptom
« Reply #6 on: December 22, 2016, 08:17:54 am »
 JillD4,
Your experience sounds very unsettling! I don't think I have heard of any other patient reporting such symptoms,,,, glad it seems to have been a one time event  ???,,,,,
Such is the unpredictability of the AN,,,  unfortunately , as it grows it impacts other areas in the brain,,,,

It is an anxious time as we approach treatment,, however, if you are confident in your surgeon I am sure you will be fine. Enjoy your Holidays and loved ones. Try not to spend too much time anticipating "what is to come",,,  :-* ,,, it will all be behind you shortly.

Happy holidays and prayers for peace go out to you,,,
Keep us informed please,,,
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

drirf

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Re: Strange Symptom
« Reply #7 on: January 14, 2017, 05:44:00 am »
I have noticed sound sensitivity and other symptoms you are describing  too. Few days back my son closed the door forcefully but to me it sounded like an explosion . It was so upsetting but after hearing your story , it is making sense.

Kathleen_Mc

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Re: Strange Symptom
« Reply #8 on: January 15, 2017, 03:27:00 am »
Jill: Were all your MR's done with contrast ? On the same machine ( or at the same facility ) ?...Just wondering if something was missed interpreted when you had the second one. Did anything happen to your general health, did you have an accident/ head injury ? I ask that as at one time my doctor's wondered if  had a tiny AN for a very log time that suddenly took a growth spurt for some reason ( had symptoms starting age 17, car accident about a year prior to Dx and during that year symptoms increased)
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

ANSydney

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Re: Strange Symptom
« Reply #9 on: February 24, 2017, 07:52:40 pm »
Jill, how are things going?

 


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