ANA Discussion Forum
Archive => Archives => Topic started by: Gennysmom on March 06, 2006, 10:08:28 pm
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greetings all, I had my very first MRI done last week and the ENT called the next day with a diagnosis of right side AN.  I have an appointment on 3/20 with another ENT specialist, where I hope to get a lot more information. I have had gradual hearing loss and tinnitus for years, to which I attributed to too many loud concerts and parrots screaming in my ear ( with my mother goading a "I told you to wear earplugs"), so I never checked until now. In the last couple of years I've noticed a fullness in my ear when there are loud sounds, and the last couple months I've noticed some slight nausea. I"m hoping to hook up with anyone with similar symptomology and/or live in the Seattle area and have experience with Doctors here (I'm Group Health). I found the Seattlean website, but it looks like it hasn't been updated in a while. I'm thankful for those who have come before me to make the path easier for me....and I hope that I will know more after 3/20. Thanks!
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Kathleen,
My sister in law is in seattle. She's an oncology nurse at one of the hospitals out there. I know when I was diagnosed she offered for me to come stay with them as she knew of some terrific docs that we versed in my problem. I'll shoot her an email and see if she can send me some names. I'm not sure who else on here is from that area.
Did they tell you the size of your AN?
Mine ent was very vague when I got my mri copy and report for my consult I learned more than I wanted to know lol The ana boolets are very informative. So sorry you are joining our club just remember we are an exclusive bunch who only let the best and their families join us ;D
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I've emailed my initial ENT today, so hopefully he still has the charts to tell me about the size and orientation of my tumor. Will post the info when I know it....
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Just because I've had to do this more than once...Ask for copies of your records and mri films and reports and start a file. I've needed info for other doctors, insurance company, disability company plus I want to know what they don't always tell me.
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It's 3.1cm x 2.0cm x 2.1cm, and I got the MRI photos too. It's pressing against my brain stem....darn, darn, darn.
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Kathleen,
Mine pressed against my brain stem too...I had such horrible headaches. Please do not get on any roller coasters! I had trouble with flying too.
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No worries, I hate rollercoasters. I only have tension headaches so far. I need to fly, I have a 2 1/2 week trip to Europe coming up in June that I do not want this to interfere with.
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Oh MY...I had to take a business trip after diagnosis and would rather have crawled. I was having horrid headaches before and started taking decadron for the headaches. They were from the pressure on my brain stem. Depending on the type of plane you are on...If the pressure is too much ask for a hot cup of water with a washcloth and hold it over your ear..You look silly but it did provide me with relief. The stewardesses don't want to do it but tell them why and they'll accomodate. After almost tossing my cookies on a stewardess sitting next to me when I turned white and almost passed out they were quick to help out ;D
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I saw two ENTs in Seattle, opted for Dr. Jay Rubinstein at U of WA. He is a great doctor with excellent bedside manner. I'm still suffering 7 months post-op, but can't say it's related to surgery. I'm mystifying all of the docs I've seen.
Anyway, I recommend him.
Nan
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Thanks! I'll have to see what my options are...I'm Group Health (an HMO) so I hope I can get coverage to do what I want. Battyprincess just told me that UW is the place to go. Her sis in law is an oncology nurse up here. I will add his name to my list of questions to ask the ENT specialist I'm seeing on 3/20. Who were your surgical team?
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Nan - Are you any better? I know you were headed to see other doctors, how did that go?ÂÂ
Still keeping you in my thoughts and prayers and sending a hug your way.
Take care,
matti
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Gennysmom,
I have flown on three trips in the last ten months, and encountered no problems with cabin pressure.
Have a great trip this summer. Don't know where you are going in Europe, but I have been to Italy, Germany, Austria, Spain and England a while back. I loved it, Europe is so not America or American!!
Denise
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Denise what size plane did you fly in? I had problems and was told that (I think) DC-10's are the worse for cabin pressure and ear problems. I'll have to pull out my old ticket and see. Plus for me my tumor was in and around the ear canal so I'm sure that had something to do with it.
Kathleen: For a chance to go to Europe I'd take a chance just remember the hot water in the cup for landing :o)
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I'm crossing my fingers although the stress this week is bringing nausea to the forefront of conditions and I'm not doing so well with it. Experementing with the OTC meclazine I found, if it doesn't do any good I'm calling the doc. Dun wanna travel if I'm going to be miserable.
Me, Boyfriend, Mom, Dad, Aunt, Cousin are jumping the pond to meet up with 3-4 Spanish exchange students we had growing up in Brussells. Then us Americans are hopping aboard a riverboat in Antwerp for a 12 day cruise along (mostly) the Rhine. So if I have surgery before, mom wants to cancel the trip. I really want to try and make it, then have surgery when I get back. Clarity will hopefully come on 3/20. I'm not sure what we're flying on....I will try and find out.
Denise....did you fly pre or post op?
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Sea Band bracelets helped me quite a bit.
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I flew a few months before my AN diagnosis. I did not have nausea, but did have ear pain/ head pressure on my AN side for a few days after I landed. Both going and returning. Since surgery, I have flown a few times and do not have any problems. I use EarPlanes for the cabin pressure. You can buy them at a drug store, you put them in when the cabin door closes and then can remove them when you reach altitude. There are a soft plastic and literally screw into the ear canal. I always keep mine in the whole time. They will interfere with hearing, and if have SSD, like me, then you won't be hearing much, but I"ll take that over ear pain/pressure anyday.
take care,
matti
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Thanks everyone for your advice, I can't find the sea bands I had, so I'm going to get a new set today. I just started this bad bout with nausea, so I'm also hoping maybe it's just a virus or something. Before this week I had it occasionally, and not enough to want to take anything. The last time I flew was a year ago and I didn't have a problem, so I'm hoping that the Dr. will give me the all clear to wait till July for surgery. Keep your fingers crossed! You guys rock!
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I had surgery in May, 2005 and flew post-op on in the following months, September 2005, November 2005 and February 2006. I don't know what kind of planes, but flew Northwest, Midwest, and American Airlines.
Denise
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Cheryl-
About the same, sorry to say. Thanks for asking. Almost done at the Mayo. Had a very bad experience with Dr. Colin Driscoll on my follow up, he was blaming/shaming me for not trying hard enough...basically saying my not getting better was my fault. Needless to say, I won't be seeing him again and may write a letter of complaint.
Also saw the neurologist, who just says it's taking a long time...back on anti-depressants, seeing a psychologist too. Reading books on chronic illness--hate to think I'm in that category, but it fits for now.
Hope you are doing well?
Nan
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Hi. I am a Seattle resident who had a left-side AN removed May of 2004 by Dr Mangham/Dr Steege...Seattle Ear Clinic. Huge amounts of dizziness, vertigo and nausea...surgery with them was brilliant and I had an awesome recovery. They are my favorite people. Should you wish to chat E-mail me at littlemissrory@hotmail.com ...I don't often come on the forum.
Best of luck. Seattle is a great place to be in this situation.
Rory