Author Topic: Just wanting to introduce myself.  (Read 4523 times)

PSUtuna

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Just wanting to introduce myself.
« on: August 19, 2016, 04:37:36 pm »
Hello,
My name is Tim. I'm 32 years old and live in South Carolina. I was recently diagnosed with an AN, but it has been a long process. Three years ago I became very dizzy and sick to my stomach on several occasions. This was accompanied by ringing in my right ear. I was refereed to an ENT from my family doctor. The ENT diagnosed me with Meinerir's disease. I was told to cut down on my sodium. That actually seemed to work. I would still get dizzy spells from time to time, but the ringing was always present (sometimes louder than others). I just chalked it up to having to many nachos. This went on until this past September. I started having trouble swallowing and breathing. This would also come and go. Again, I was referred to the ENT. I was diagnosed with laryngopharyngeal reflux. I was put on Zantac. Off I went. The Zantac was helping, but not completely. When I returned for my check up, I was placed on Prolosec. The Prolosec seemed to make things worse. I go back to the ENT for my check up and he says, "we will just stick with the Zantac and you will have to watch your diet better." I said, hey while I'm hear, I've noticed that my hearing in my right ear has gotten worse (which will happen with Meineirs' disease). So, they conducted a hearing test. At the completion of the test they found that I had lost 60% of my hearing in my right ear within three years. I was set up for a hearing aid consultation. Luckily, my ENT noticed the major drop in hearing and scheduled me for an MRI. A week later I have the MRI, a week after that I'm back in the ENT office and find out that I have a brain tumor. I have been referred to see a neurosurgeon and already spoke with the ENT that would do the surgery. They wanted to schedule it for September, but I have a trip planed to Germany in October. They said that would be fine, and scheduled it for the end of October (tentatively).

I came to the forum looking for others stories and possibly those that can answer some questions. My family and friends seem to be in more shock than I, and they have been hard to talk to. Right now, my only symptoms are the ringing of crickets in my ear ALL THE TIME, my throat issues that is partially controlled by Zantac depending on the day, and the most annoying thing... I get a headache everyday around noon that sticks around all day until I give up and go to bed at 8:30.

I guess I really just wanted to vent. It is what it is, and there is nothing that anyone can do about it right now. I put my faith in God and try to keep living as I was before the diagnosis.

If you read my rant... thank you. hahaha. Best wishes for everyone dealing with this now, and those that have dealt with it in the past.
Diagnosed July 2016. 2.5cm.
Translab: 10/28/16 at Duke. Home on 11/1/16.
Emergency 11/9/16 return to Duke with CSF leak and swelling. Second surgery that night. Waiting to see lasting effects, but doing well.

Janey

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Re: Just wanting to introduce myself.
« Reply #1 on: August 19, 2016, 10:22:02 pm »
Hi Tim,
So sorry you have had to join our club!   My advice to you is to research this thing out
before you decide on action.  Seek opinions of physicians very experienced in acoustic neuromas.
You will find on this site several facilities that offer free consults.  You didn't mention how big
your tumor is.  These things can cause a multitude of symptoms, and the ones you are experiencing
are very common to many of us.  Good luck to you as you plan out your course of treatment, and
God bless!

PSUtuna

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Re: Just wanting to introduce myself.
« Reply #2 on: August 20, 2016, 11:32:50 am »
Thank you. I have seen a few ENTs and I am waiting now to meet a neurosurgeon that specializes in AN surgery. I have spent a lot of time researching my best options. My tumor is currently 2.5 cm.
Diagnosed July 2016. 2.5cm.
Translab: 10/28/16 at Duke. Home on 11/1/16.
Emergency 11/9/16 return to Duke with CSF leak and swelling. Second surgery that night. Waiting to see lasting effects, but doing well.

Greece Lover

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Re: Just wanting to introduce myself.
« Reply #3 on: August 20, 2016, 01:55:08 pm »
Good luck. There are great treatment centers in California, so you're lucky in that regard. Make sure to get a couple of opinions.
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.