Author Topic: Common, Rare and Bizarre  (Read 1372 times)


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Common, Rare and Bizarre
« on: May 06, 2018, 07:44:41 pm »
(Almost) Six Years Post-Op

I hope I can give encouragement to all AN sufferers by describing some of my symptoms and experiences. Since my 12 hour procedure at UPMC Presbyterian Hospital, University of Pittsburgh in July 2012, I have improved substantially but some symptoms remain. (Thank you Drs. Hirsch and Gardner.) Most of my symptoms are the same as many others on this discussion board have described, others are rare.

Rare Symptoms That Have Stopped or Almost Completely Resolved

Double Vision
Blurred Vision while walking
Phosphines in darkened rooms while trying to sleep
Optical illusions in peripheral vision in palsied eye with nystagmus
Epileptic Seizures

Common Symptoms That Have Stopped or Almost Completely Resolved

Dry Eye in palsied eye
Palsied eye would not close
Facial nerve twitching on affected side of face

New Symptoms Replacing Old Symptoms

Tearing in palsied eye while eating; replacing dry eye (aka, crocodile tears)
Running nose while eating; replacing dry eye

Common Symptoms That Have Substantially Improved


Common Symptoms That Come and Go

Wonky Head
Mild Vertigo
Orthostatic Hypotension (Dizziness upon standing)
Difficulty Hearing in Noisy Environments

On mild, sunny days I usually feel very good (but not always). During days with heavy precipitation, rain or snow, some symptoms intensify especially fatigue, imbalance, wonky head, mild vertigo and depression.

One of the bizarre symptoms that I have developed is what I call “Epic Dreaming”. These dreams are intense, highly vivid, and usually disturbing. They are primarily “science fiction type” dreams and repetitive but consist of other themes as well. I use 50 mg of Trazodone  (Desyrel) at bedtime to help sleep and suppress dreaming.

I was almost 60 years old when I had my AN surgery and received Social Security Disability. I’m retired now. Luckily my financial situation is good and my disability has not been as extreme as other members have related, except with some rare symptoms that have now faded.

Don’t give up hope! Some of my worst problems with fatigue, headaches, depression and anxiety have lessened greatly.  ;D
AN Middle fossa (2012) 35 cc lesion left side pressing on cerebellum and pons, deaf in left ear


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Re: Common, Rare and Bizarre
« Reply #1 on: May 25, 2018, 08:50:59 am »
Common Symptoms That Come and Go
Wonky Head
Mild Vertigo
Orthostatic Hypotension (Dizziness upon standing)
Difficulty Hearing in Noisy Environments

As for the orthostatic hypotension (I had several shocking syncopes, whose nature was orthostatic hypotension, especially after some wine, but my heart is in good conditions) I've found something maybe interesting.

The role of the 'trigeminocardiac reflex' (after a VS surgery, of course)

-Serafino (Rome, Italy)
« Last Edit: May 25, 2018, 08:53:38 am by extropy »
2014 - at age 65 problems with left ear (tinnitus, imbalances, deafness, short-memory problems, etc).
2014 - MR found VS, 3.5 cm circa.
2014 - Exeresis, in Rome, RS approach,  followed by hydrocephalus ... and shunt.
2018 - AN has regrown, volume is 2.6 cm3.
2018 - GK (Humanitas, Milan)


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Re: Common, Rare and Bizarre
« Reply #2 on: June 08, 2018, 09:46:05 am »
For those who may be "freaked out" by this post, I just wanted to note that all outcomes are different.  One person's outcome isn't necessarily another person's outcome.

I just celebrated my 11th ANniversary on 5/31/07 and life is the same as it's ever been with the exception of being SSD (single-sided deaf).  I opted for a BAHA implant 9 months post AN op and it has helped immensely. 

Not bragging, just offering hope to others. 

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways