Recent Posts

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For those in the 'watch and wait' status / Re: Newly Diagnosed - A bit unsure
« Last post by buzneg on June 24, 2018, 07:22:39 pm »
Northwestern Memorial Hospital is ranked #9 in the nation for Neurology & Neurosurgery

Many people would consider any facility in the top 50 to be outstanding.

https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryhttps://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery
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Eye Issues / Phantom sightings in peripheral vision
« Last post by gunns on June 24, 2018, 05:10:26 pm »
Has anyone else had phantom sightings in their peripheral vision?  It's like sudden movement in the in the peripheral vision. Almost like a mouse/rat or bird moved quickly then disappeared.  Its caused me to go looking for what I thought I saw.  But I always found nothing -wooo wooo wooooo :o :o!  This started before my operation and has continued after surgery.  I didn't know it was related to these tumors until I read about it in an ANA hand out.  Its just like most of the other symptoms that we experience and blow off to the ageing process not knowing their connection to these tumors.
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Facial Issues / Re: selective neurolysis
« Last post by Arasha on June 24, 2018, 12:40:36 pm »
I've met with the doctor and discussed my options. He agrees I'm a perfect candidate for this procedure.

The cost of the surgery is 35k - this is with insurance coverage, but my plan with Cigna does not provide coverage for this due to it being out of network. They said around 40k with no insurance coverage at all which is weird to me.

I was referred to a specialist to attempt to get Cigna to pay but we'll see. 35-40k is a price to pay, but I feel it's almost worth it.


I appreciate the update. Just curious, do you know how percentage of symmetry improvement is it expected? I heard that the platisma is cut during this process. How long is needed to be completely recovered? Any therapy required after the surgery?. Sorry for so many questions.
-Gloria
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AN Issues / Re: AN and Exercise
« Last post by notaclone13 on June 24, 2018, 08:46:58 am »
I have been going through almost the exact same thing as you with an AN measuring 8 x 3 mm.  At first I attributed it to being older and out of shape.  After walking 15 minutes or so I would get so disoriented I would have to sit down until it passed. During a training session at the gym that included some floor exercises, I got so dizzy I had to stop. Judging by the size of your AN it is likely of the intracannalicular variety or in the IAC.  These relatively small IAC tumors are often associated with more dizziness and balance issues than larger tumors outside the canal.  As you look through posts on the forum you will find many people with ANs experience more symptoms upon  exercising or start to experience problems with certain yoga positions. What you are experiencing is quite common with ANs, you are not alone.  Quite a few people in the watch and wait category find running, cycling and walking important to maintaining good balance despite the AN. I have found the forum posts regarding exercise and balance issues to be a very good source of information and shared experiences.
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AN Issues / AN and Exercise
« Last post by golfguy49 on June 24, 2018, 07:24:53 am »
For a number of years now, exercise has been a struggle.   Not because of motivation, age, or pain, but because I would get light-headed and dizzy (seeing stars) and that would eventually cut my work-out short.  Even when I am not feeling any balance issues while resting, once I start rigorous exercise or yard projects, my head goes wonky on me after about 10-15 minutes.  I wonder if anyone else has experienced this sensation, and if you also believe it might have something to do with the AN?  I was diagnosed just a few months ago, but I am starting to put some puzzle pieces together as to why working out may have been so disproportionately difficult in recent years.  Even a 1-2 mile walk gets more difficult toward the end.

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Pre-Treatment Options / Re: Possible AN?
« Last post by Patti on June 23, 2018, 06:42:04 pm »
All I can say is that I totally empathize with you.  That is a long time to wait! The torture is very real for anyone waiting to find results of a medical test.  I guess the only thing I can say on the positive side is that ANs grow VERY slowly so try not to worry that anything more will happen in the next month. just stay overly busy with fun things and let the days pass.  Best of luck to you!
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Pre-Treatment Options / Re: Possible AN?
« Last post by notaclone13 on June 23, 2018, 12:01:41 pm »
MAb2018, when is your MRI? Until you have a definitive answer try to stay calm.  Easier said than done, I know. 
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Pre-Treatment Options / Re: Possible AN?
« Last post by MarlaB on June 23, 2018, 11:06:09 am »
I am glad to hear your doctor is being proactive. yes, I have heard of a number of cases where this turns out that it is NOT an AN, however, in my case, I was sent home for nearly 20 years before I finally got a doctor to check for a tumor "just in case" and it was. You don't know what it is, until you know what it isn't. I wish you the best, knowing if it IS a vestibular schwannoma/acoustic neuroma, you are in the right place, and if it ISN'T it isn't!

Remember to breathe.

Marla B.
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Pre-Treatment Options / Possible AN?
« Last post by Mab2018 on June 23, 2018, 10:35:43 am »
I apologize, this is long....

A little over a month ago I went to the walk in clinic due to my ear feeling odd, not pain, but plugged. I was also dizzy and having balance issues. The NP felt my issues were due to a little wax build up and cleaned my ear out. She stated it looked like I had some fluid in my ear, but that it didn't appear to be infected. She gave me a 5 day prescription of Prednisone.
After I was done taking that, my ear felt the same so I went to my regular doctor. She also stated she felt there was fluid in my ear still. She gave me a 7 day prescription of Prednisone and had be do nasal rinses, Flonase, Benedryl at night, Zyrtec in the morning.
After that 7 days, my ear was even worse. The pressure was worse and I had started to have a ringing in my ear. My doctor gave me a prescription for an antibiotic, which didn't do anything, but she wasn't sure what else to do.
I was able to get into an audiologist (ENT is months out) and had my hearing tested. My left ear is normal, but my right ear had moderate to severe hearing loss of both low and high frequency, the middle frequency was normal. My ability to discriminate words was also lower in my right ear. She said I have sudden sensorineural hearing loss. She stated she doesn't think there was ever fluid in my ear, but that both the previous doctors were seeing some scar tissue that can look like fluid. She stated she would speak with the ENT and he would decide if my appointment date for mid July was okay or if he wanted to see me sooner.
Within an hour the ENT office called and stated he wanted to see me the next morning. He also didn't feel that there was ever fluid in my ear as well. The ENT stated the hearing loss could have been caused by a virus, but he wanted to rule out a tumor. I am scheduled for an MRI with contrast next month. He seemed to imply it probably wasn't AN, but was doing an MRI just in case. The more I research, the more I wonder if he was downplaying the possibility. He gave me a 14 day prescription of much higher dose of Prednisone. I have 1 more day of that and it's done nothing. 

My symptoms:
Hearing loss of low and high frequency in the right ear, I suspsect it happened much earlier than the last month. For at least a year I've gotten irritated with my husband because I claim he's always mumbling. (I can't really find anything that talks about losing both low and high)
Tinnitus in the right ear (constant)
Pressure in the right ear (pressue is always there, severity changes)
Numbness in the right check, corner of my mouth, and along the jawline (Intermittent)
Balance issues/dizzy feeling (Intermittent)

I know these symptoms could be any number of things and the only way to know for sure is an MRI, but the wait is killing me. Am I being overly paranoid?Has anyone had these symptoms and it turned out to be something else?
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Radiation / Radiosurgery / Re: Recent MRI - 2 1/2 years from radiosurgery
« Last post by notaclone13 on June 23, 2018, 09:33:57 am »
Patti, I am sure I speak for many in congratulating you on your latest MRI report. You have had such a long and difficult road and have faced each challenge and setback with courage and persistence. You are an inspiration. I sincerely hope you will have smooth sailing from here on out and can put the AN nightmare behind you.
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