General Category > AN Issues
Very worried
Willbur:
Hello All,
I wasn't sure where to put my initial post so I will post here in hopes of a response. I was diagnosed a few days ago with AN in my right ear. The doctor said that it's currently 2.3 cm or about an inch long which I believes puts me at the medium end of the scale. I've been terrified that this will impact my life greatly. I'm seeking some guidance from other AN suffers to help me through this difficult time. The weird thing is about 4 years ago to the day I had a seizure. Do you think this could be related to my AN? What are some insights. Should I opt to do radiation or go straight for removal? I suffer from slight tinnitus although it can fluctuate as well as I still have some hearing left.
Tod:
Wilbur, I have no idea about any possible link between your tumor and seizure. It seems doubtful to me, but sometimes unusual things happen. I am certainly one of those cases. I had a relatively large tumor, a very long surgery, and was left with a few odd challenges. As for treatment, you should consult with multiple docs. Radiation might be an appropriate way to go, and may eliminate the need for surgery. It may not. Surgery may still need to be followed by radiation, as in my case.
While my experience had a pretty big impact on my life, it wasn't even mostly bad. Just kind of challenging. Life is pretty good. Nor normal, but better.
Welcome to the forum, it is a pretty good place.
Tod
Willbur:
--- Quote from: Tod on October 15, 2016, 07:04:45 pm ---Wilbur, I have no idea about any possible link between your tumor and seizure. It seems doubtful to me, but sometimes unusual things happen. I am certainly one of those cases. I had a relatively large tumor, a very long surgery, and was left with a few odd challenges. As for treatment, you should consult with multiple docs. Radiation might be an appropriate way to go, and may eliminate the need for surgery. It may not. Surgery may still need to be followed by radiation, as in my case.
While my experience had a pretty big impact on my life, it wasn't even mostly bad. Just kind of challenging. Life is pretty good. Nor normal, but better.
Welcome to the forum, it is a pretty good place.
Tod
--- End quote ---
Thanks for the welcome Bob. How long have you lived with AN? As you mentioned it hasn't impacted your life a lot, but I'm sure insurance costs must be through the roof. I have a buddy back in Wisconsin that works at the neurology department and he mentioned that I should come up. Also, I don't see any support groups for Austin. Lastly, I was doing research on clinical trials. Is this something you have done or plan on doing? I want to do what is best not only for myself, but others around the world.
alabamajane:
Wilbur, mine was about the same size as yours at diagnosis. My first ever seizure, later in life, is what led to an MRI and diagnosis. I had about 8 before surgery and the neurologist continues to tell me they are unrelated because seizures "happen in a different part of the brain",,, ( I haven't had any since the surgery 5 years ago this month!),,,, :-\,, so,,, I guess I would say that yours was probably unrelated also,, just coincidental,,,,,
I would recommend taking your time to research second opinions and listen to your doctor. Some people go straight to radiation and some to surgery and some wait and watch for awhile. It depends a lot on your preferences as only you can make a decision that you can live with. You don't seem to have many symptoms yet and that's good.
Good luck to you. I'm sure you will get more advice,,, I just wanted to chime in on the seizure issue as I have experienced it.
Jane
Willbur:
--- Quote from: alabamajane on October 15, 2016, 08:07:19 pm ---Wilbur, mine was about the same size as yours at diagnosis. My first ever seizure, later in life, is what led to an MRI and diagnosis. I had about 8 before surgery and the neurologist continues to tell me they are unrelated because seizures "happen in a different part of the brain",,, ( I haven't had any since the surgery 5 years ago this month!),,,, :-\,, so,,, I guess I would say that yours was probably unrelated also,, just coincidental,,,,,
I would recommend taking your time to research second opinions and listen to your doctor. Some people go straight to radiation and some to surgery and some wait and watch for awhile. It depends a lot on your preferences as only you can make a decision that you can live with. You don't seem to have many symptoms yet and that's good.
Good luck to you. I'm sure you will get more advice,,, I just wanted to chime in on the seizure issue as I have experienced it.
Jane
--- End quote ---
Hi Jane,
Thanks for letting me know. The first thing when I heard tumor was "OMG I'm going to die". I did research based on the diagnosis. All this started a couple weeks ago with tinitus, followed by loss of hearing. General doctor said middle ear infection most likely, but told me to go see an ENT. The ENT Doctor pegged me at 90% virus, 10% tumor, but wanted an MRI regardless. The crazy thing was the day of my MRI my insurance only wanted to cover half of it and I almost walked out because of my ignorance, but my wife told me to do it anyways regardless of cost. I'm so thankful that I did it, but the day he told me I bursted out crying thinking that it was the end of the world. Once you had your surgery did it regrow or are you good now?Also, from the time you were diagnosed to the time you had surgery what was the period of length? I'm switching to my wife's insurance in January which has a lower deductible.
Also, in regards to the seizure, I was asking because I'm having my MRI sent over to the neurologist from 2012 to see if they can locate anything on it. I wasn't sure if it was related in anyway, but at that time the doc told me that I should be fine in 2012, therefore I ignored it. I've had tinnitus a few times a year, but usually goes away after a few days, thus my reasoning for never it having it checked out. I'm so glad this ENT was very quick about getting me an MRI.
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