General Category > AN Issues
Very worried
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 from: Tod on October 15, 2016, 08:39:34 pm ---[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.
--- End 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
[/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:
--- Quote from: ANGuy on October 15, 2016, 09:11:42 pm ---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.
--- End quote ---
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
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