My Intro (Conditions: AN/VS, V, T, ETD/PET, H)

[ExtremeJustin]

Hello. I'm Justin aka Extreme Justin. I have quite a conditions, most of which are related to the Vestibular Schwannoma / Acoustic Neuroma. I have Tinnitus, Vertigo (previously just the loss of balance kind, now the sea-sickness kind but without nausea), Eustachian Tube Dysfunction (the chronic kind) and moderate H (I can't remember how to spell it right now). Oh and I also have short term memory problems. Sometimes I can't even remember the common names of items like a table, a window or a mirror. I have some other issues like spinal degeneration that I don't think are related to the AN at all. I have no idea if AN can cause Hypertension (High Blood Pressure), but I've had that since my early 30s/late 20s.

I've had intermittent T for as long as I can remember and chronic T in the left ear since the first time I lost hearing in that ear on May 1st 2013. I have had varying levels of H for about 2 or 3 years, but it became much worse after my MRI. The people doing my MRI didn't have me wear earplugs. It took months before I could eat in a restaurant without wearing an ear plug for the left ear. I've had balance problems since 2010, but they could have been from Hypertension all the way up until November 2014 when the Vertigo balance issues started. In November of 2015 I got Eustachian Tube Dysfunction and also ended having to walk with a can at night. Gradually I started walking with a can more and more, and after my diagnosis of AN I started walking with a cane all the time. I thought the balance problem came from spinal degeneration, but it turns out it's from the AN. I'm currently waiting to find out when my Translabrinthine Approach surgery will be. It was already canceled once through no fault of my own, and I'm hoping they get this on track soon as I have developed the sea-sickness/merry-go-round type of Vertigo since late February. Meclizine is now a must.

Justin

 

[glynis]

@ExtremeJustin ,
Autistic Nuroma is a small slow growing non cancerous tumour on your acoustic nerve.
Some times they can be left alone and a yearly check up to monitor and them.
You might find Betahistine or proclorperazine helpful for dizziness .

Did they say your AN was big ?

Love glynis

 

[ExtremeJustin]

@ExtremeJustin ,
Autistic Nuroma is a small slow growing non cancerous tumour on your acoustic nerve.
Some times they can be left alone and a yearly check up to monitor and them.
You might find Betahistine or proclorperazine helpful for dizziness .

Did they say your AN was big ?

Love glynis

Thank you. I hadn't heard of those 2 meds before. My only experience so far has been with Meclizine. I will effeminately look into those 2 meds.

Unfortunately, my AN has been slow growing for years and is now considered large. When it was caught in July the neurotologist that I was referred to by the neurologist said that I could wait for a year, but that yearly monitoring wasn't a viable option for me. I probably should have mentioned that in the intro. I'm not even going to be able to save the hearing in the left ear so they are g to the going to do the translabrynthine approach surgery.

Justin

 

[Alue]

Hi Justin. That's a lot to deal with. Are you eligible for a cochlear implant following the surgery? I did a quick search and found this article: https://www.ncbi.nlm.nih.gov/pubmed/15793406

I hope your surgery goes well.

 

[ExtremeJustin]

Hi Justin. That's a lot to deal with. Are you eligible for a cochlear implant following the surgery? I did a quick search and found this article: https://www.ncbi.nlm.nih.gov/pubmed/15793406

I hope your surgery goes well.

Thank you. A cochlear implant was mentioned by neurotologist, so I believe I will be eligible. I didn't know that it could be done at the same time as the surgery. I will have to bring this up when I do a pre-op appointment to see if I'm a good candidate for this.

Justin