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]

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

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]

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

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.

[Tod]

[quote author=Willbur link=topic=23166.msg979772333#msg979772333 date=1476582711
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.
[/quote]

Wilbur, My surgery was in 2010. How long I had the tumor prior to that is anyone's guess. With a standard growth rate of 1-2 millimeters/year, it could have been with me either half my life or nearly all of it. At this point in my life, I have no interest in clinical trials. I am currently on a two-cycle for MRIs as long there is no growth, I am happy. My remaining issues are single-side deafness, swallowing difficulties (the small muscle involuntary peristaltic functions don't work very well), some occasional speech difficulties (from both the swallowing problems and perhaps some remaining vocal fold weakness following 18 months of paralysis, and hemi-facial spasms that most normies don't notice, and a no-longer strictly symmetrical face. These issues are essentially minor, and very people have the speech or swallowing difficulties. None of these things have gotten in the way of remaining in the top tier of my profession, three trips to the White House, and having a pretty good life.

My insurance costs have not changed. But I am glad there are no longer lifetime limits. I did not join a support group because the local one really wasn't happening at the time it might have been useful.

-Tod

[Willbur]

[quote author=Willbur link=topic=23166.msg979772333#msg979772333 date=1476582711
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.

Wilbur, My surgery was in 2010. How long I had the tumor prior to that is anyone's guess. With a standard growth rate of 1-2 millimeters/year, it could have been with me either half my life or nearly all of it. At this point in my life, I have no interest in clinical trials. I am currently on a two-cycle for MRIs as long there is no growth, I am happy. My remaining issues are single-side deafness, swallowing difficulties (the small muscle involuntary peristaltic functions don't work very well), some occasional speech difficulties (from both the swallowing problems and perhaps some remaining vocal fold weakness following 18 months of paralysis, and hemi-facial spasms that most normies don't notice, and a no-longer strictly symmetrical face. These issues are essentially minor, and very people have the speech or swallowing difficulties. None of these things have gotten in the way of remaining in the top tier of my profession, three trips to the White House, and having a pretty good life.

My insurance costs have not changed. But I am glad there are no longer lifetime limits. I did not join a support group because the local one really wasn't happening at the time it might have been useful.

-Tod
[/quote]

Well that is comforting to know Tod. During your diagnosis from your doctor did you instantly change diet or anything? I'm a semi-former smoker (cigarettes) and pretty much stopped drinking after I heard the news. I'm attempting to do some holistic approaches (Kombucha tea, limiting red meats, etc.). For the most part regardless of the smoking and drinking, I've been active by going to the gym everyday and lifting weights. Luckily I don't have any other issues like diabetes, which is heavy in my family or heart issues.

[ANGuy]

I don't think there is an association, generally, between seizures and AN's.  I suppose if you had problems with CS fluid or brain stem intrusion, they could cause seizures, but I think if that was going on the radiologist would have pointed that out. 

As for seizures, there are many kinds and some aren't so clear as to whether they are seizures or not.  My son was having seizures that consisted of him being confused, vomiting, looking to his left, and then just going back to normal.  This only happened once or twice a year after he went to bed and who would think a 5yo throwing up and being sleepy at night would be a seizure?  Sure enough, he had an age-related condition that he grew out of.

I could see where having the room spin, vomiting over and over, and other severe vertigo symptoms might seem like a seizure, and then with hindsight may not have been.  Also, approximately 25% of the population will have a seizure and almost all of them will only have one throughout their life.

If what happened to you was a severe, sudden, vertigo attack that left you crawling on the spinning floor as you made your way to the bathroom over and over then I can personally tell you that is a classic AN symptom and probably not a seizure in the true sense.

[Willbur]

I don't think there is an association, generally, between seizures and AN's.  I suppose if you had problems with CS fluid or brain stem intrusion, they could cause seizures, but I think if that was going on the radiologist would have pointed that out. 

As for seizures, there are many kinds and some aren't so clear as to whether they are seizures or not.  My son was having seizures that consisted of him being confused, vomiting, looking to his left, and then just going back to normal.  This only happened once or twice a year after he went to bed and who would think a 5yo throwing up and being sleepy at night would be a seizure?  Sure enough, he had an age-related condition that he grew out of.

I could see where having the room spin, vomiting over and over, and other severe vertigo symptoms might seem like a seizure, and then with hindsight may not have been.  Also, approximately 25% of the population will have a seizure and almost all of them will only have one throughout their life.

If what happened to you was a severe, sudden, vertigo attack that left you crawling on the spinning floor as you made your way to the bathroom over and over then I can personally tell you that is a classic AN symptom and probably not a seizure in the true sense.

Surprisingly not many symptoms with mine at the time other than I fell over and started biting my lips and tongue apparently. It happened in front of a pizza guy. As far as current symptoms I feel great. It's more or less tinnitus and loss of hearing. Balance seems to be on par and appetite is normal.

[alabamajane]

Hi Wilbur,
RE: my AN,  like I say, I had a seizure, not vertigo ,, and neurologist sent me for the MRI Which ended up showing the AN. that was July 2008. I had another seizure within the month and was put on anti seizure meds. I decided to wait to treat as my symptoms were not that bad and I was able to work.

My symptoms progressed to the point of being debilitating in 2011. That is when I decided on surgery. Not only is size of the tumor important,, ( mine grew to 2.8 cm at surgery) but the location of it is most important. Mine grew toward the brain stem and was impacting it. That is why I was beginning to feel so much worse by 2011. I had surgery, trans lab, in Oct 2011,, 5 year anniversary on the 27th,, ,mine has not regrown ,, knock on wood,, so far. I have an MRI coming up.

So watch your symptoms, get several opinions on how to treat it and you will make the decision that is right for you. There are several doctors who will provide free consultations by phone which I did and it was most helpful. One group is the House clinic in Los Angeles. HEI.com I think. There are others you can find on the forum. You may also prefer to check into radiation for treatment,, I didn't want that route so can't speak to it.

Good luck and let us know how your journey goes. Hope you never experience another seizure!! They are quite scary and disconcerting!! Especially for those around you,,,,

Jane

[Willbur]

So I saw a doctor here who does translab surgery and said that at this point there is no way to preserve my hearing. Should I seek a second opinion or should I just move forward with it? Ive already opted out of radiation because he said it can make it worse. Lastly, he pointed out there are dark spots on it which indicates that the tumor is cut off from blood flow and it should be easier to remove. Any input would be helpful.

[ccooper]

It never hurts to get a second opinion! There are so many options for phone consultations with amazing doctors. House usually gets back to you within a week or two. I called in advance and said I needed an urgent consultation and they called me the day they got my MRI. Based on the size of yours, you don't read much about people keeping hearing or having radiation. Hearing with one really isn't that bad. Actually none this is bad, just a few life changes. I had a tumor much larger than yours, removed and back to work in under four weeks. I did a lot of holistics, healthy eating and exercise leading up to it so I was going into it with my best foot forward. Who knows if any of it helps. I've really enjoyed acupuncture for some head aches post surgery. Best of luck to you!

[Willbur]

It never hurts to get a second opinion! There are so many options for phone consultations with amazing doctors. House usually gets back to you within a week or two. I called in advance and said I needed an urgent consultation and they called me the day they got my MRI. Based on the size of yours, you don't read much about people keeping hearing or having radiation. Hearing with one really isn't that bad. Actually none this is bad, just a few life changes. I had a tumor much larger than yours, removed and back to work in under four weeks. I did a lot of holistics, healthy eating and exercise leading up to it so I was going into it with my best foot forward. Who knows if any of it helps. I've really enjoyed acupuncture for some head aches post surgery. Best of luck to you!

Thanks for the insight. Since my diagnosis I've been actively working out and not drinking soda. I've noticed that I had a quick short tinnitus in my left ear and it stopped. The Dr. said that I shouldn't have NF2 as there isn't a tumor on the other side and that one of my parents would have had to have NF2. None of my parents have any acoustic neuromas and neither do their parents. Perhaps I'm just over reacting. I also took my last steroid pill last night so maybe that might be related.

[ANSydney]

Willbur,

Have you had a consult with a gamma knife unit. Exploring all three options fully (surgery, radiosurgery and observation) is a good idea.

[Willbur]

Willbur,

Have you had a consult with a gamma knife unit. Exploring all three options fully (surgery, radiosurgery and observation) is a good idea.

Yes I consulted a gama knife surgeon and he said it's too big. Currently doing immunotherapy to see if I can shrink it.