ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: fav on September 15, 2010, 11:05:47 am
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hello all,
i am glad i found this place.
after experiencing sudden hearing loss (total) 10 days ago an mri found a 2cm tumor on the eighth nerve.
the ent wants this addressed asap as do i.
my insurance co will not approve house clinic but has reffered my to a dr. jeffery harris i believe from scripps.
anyone know of him?
thanks
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Hi, fav.
I'm in Illinois and don't personally know any docs in San Diego @ Scripps or elsewhere, but Dale (user name dalern) recently had BAHA surgery with Dr. Harris. I'm sure she'd be happy to help you.
Also, if you search on "San Diego" - the search box is on the top lefthand side of the screen under your user info - you'll find posts related to docs in San Diego.
Good luck,
Jan
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Hi fav,
Dr. Harris is wonderful. He just did my BAHA surgery in June for my SSD. His primary location is UCSD which is where I see him and had my surgery. He us also on staff at Scripps and is well known and highly respected. You will be in the very best care. Please feel free to email me here. I'm on my way back to San Diego from a business trip and will be home late this afternoon. Would be glad to talk to you on the phone as well.
Talk to you soon.
~Dale
(Dale and all, personal contact info should not be noted on public forum here for your own privacy/protection. Folks can PM/email here to obtain your personal contact info, if need be. Thanks for understanding. Phyl)
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Hi fav and welcome to this forum .....
You described my situation leading to the diagnosis of an AN, almost exactly.
Glad Dale has reassured you about Dr. Harris. I have a thought re insurance ..... I went "out of network" for my surgery and my neurosurgeon's office staff did all of the negotiating for me and convinced the insurance company to pay the entire cost. If you really would like to go to HEI, you might check with them (maybe you have already ???) and see if they would negotiate for you.
Best thoughts.
Clarice
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Hi and welcome, Fav ~
I'm sorry you were diagnosed with an acoustic neuroma but I hope you'll be reassured from reading the posts on these forums that what you have is benign and eminently treatable. We're happy to share information, offer solicited advice and unqualified support to all AN patients. You're part of a family, here. Please 'stop by' as often as you wish. :)
Jim
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thank's dale and to all of you that responded with such kind words.
my appt with dr harris is 9/21 and after speaking with dale and doing some research on my own, i am feeling more confident about this dr.
a warm and kind bunch you all are.
best
fav
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Good luck with your appointment, fav.
Hope it goes well and that you like Dr. Harris.
Having faith, trust, and confidence in one's doctor is crucial.
Jan
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Hi Fav,
Just wanted to welcome you to the site, let us know how things proceed.
This is a great place to get advice, info, support. ;)
Maureen
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after this mornings appt with dr harris and dr carter, these men have my complete confidence.
at 2cm, i was told i have an option of surgery or radiation.
i am 56 and must make this decsion soon.
best
dan
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Dan ~
Thanks for the update. Finding doctors you can feel confident about is a major hurdle you've now surmounted. Choosing a treatment is always the toughest part but whatever you decide, we'll support you and give you any information we have that might help.
Jim
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Dan -
options are good. I had both options and although I initially thought there was "no way" I was having surgery ultimately that's what I decided to do. It was a great choice for me, but others choose radiation and was an equally great choice for them.
Educate yourself, weigh the pros and cons of each treatment, and then decide what is best for YOU. It's a very tough decision - but the other tough decision is deciding on a doctor (or doctors) and it sounds like you've already got that figured out.
If you haven't yet, you should contact the ANA for their informational brochures. You'll find they are a great resource - just like this Forum is ;D
Best,
Jan
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any one here ever had treatment with a Linear Accelerator?
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I agree with Jan - at first, there was absolutely NO way I was having radiation...and later, I changed my mind! Do the research and trust your own feelings after getting all the info you can~
Nancy
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Fav,
Sorry late to this party, but I just wanted to welcome you and mention that the toughest part of my AN journey was deciding what type of treatment to have. You will have to go with your gut...think long and hard about it and after some time and weighing pros and cons you will come to a decision you are comfortable with. Then you will get a nice sense of relief...its a good feeling.
Good luck to you and sorry I don't have any information on the linear accelerator...but it sounds pretty cool.
Welcome and take care,
Liz
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any one here ever had treatment with a Linear Accelerator?
Yes. I underwent 26 FSR treatments as a planned follow-up to AN debulking surgery in 2006. However, I'm not an expert on radiation apparatus and procedures. I can only offer my experience as an AN patient treated on a LINAC. It was tedious but painless and ultimately successful. A bit of a challenge if you're claustrophobic (I'm not) but otherwise, quite tolerable with no side effects, in my case, which may not be typical. I trust other members will be posting more detailed information, soon.
Jim
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i would like to know how many of you were cell phone users, average time spent daily on one, and do you all still put a cell phone to your head?
thanks
dan
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Dan,
The cell phone thing is still up for debate, not sure if its what caused the AN or not. I wasn't a huge cell phone user, but I have had one since the early days. I do still put it up to my ear, but tend to text more now...
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i would like to know how many of you were cell phone users, average time spent daily on one, and do you all still put a cell phone to your head?
Dan ~
You may (or may not) be surprised to learn that this cell phone question has been a subject of discussion on these forums for lo these many years. Some of us 'veterans' are a bit weary of the conversation but we also understand the curiosity of newly diagnosed AN patients who assume that even minute forms of radio waves next to their ear may have triggered the growth of the tumor we refer to as an acoustic neuroma. It's not unreasonable to pose that question. Unfortunately, although 'studies' have emerged on this issue, many are too small or are financed by a business or interest group that render the results, pro or con, suspect. For my part, I don't see the connection. Remember, ANs were diagnosed decades before cell phones were invented. I don't believe that just because the AN forms within the ear that the actual cause for the abnormal cell growth is necessarily associated to the ear, itself. However, I'm not a doctor or scientist, just an AN patient - so my opinion is just that, an opinion, not supported by scientific evidence, just like most of the AN-cell phone 'studies' that are currently extant.
That having been stated, I suggest you type 'cell phones' into the search box (on the left) and it will provide you with a plethora of threads from the past few years all relating to the cell phone/AN debate. I think you'll find it interesting.
Jim
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Hello there, and welcome to our little club...sorry for coming into the discussion so late but I just wanted to wish you luck on whatever you decide. Someone told me in my early days of this that whatever choice you make will be the right one, so don't second guess yourself to death once you do make that choice! Also, on the cell phone thing, I used cells VERY rarely but my AN is on the side I would put a phone (I'm right handed, so I would use phone on left side so right hand can do whatever..) I am sure this debate will go on forever! Anyways, good luck and keep us updated, or if you need to vent we are here for that too!
Jay
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Numerous threads on the cell phone debate; nothing concrete has been proven.
Search on "cell phone".
Personally I still go with the fish hatchery theory (inside joke for all those "oldies" out there) ;)
Jan
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Welcome fav, as nanramone (Nancy) said it illustrating that sometimes even the most determined of us change our mind, "I agree with Jan - at first, there was absolutely NO way I was having radiation...and later, I changed my mind!"
I suspect the cell phone theory doesn't hold. But just to complicate things, in a study I read, "Recent studies have examined the risk of radio frequency radiation emitted from cellular telephones on the development of AN. The hypothesis that intracranial energy deposition from hand held cellular phones might cause AN was tested in an epidemiologic study of 90 patients and 86 control subjects. In patients who used cellular telephones, the tumor occurred more often on the contralateral than ipsilateral side of the head".
Okay, I gotta go or my wife will blast me.
Glad to meet you, sorry it's under these circumstances.
Talk to you soon,
Mark
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Welcome fav, kind of a nanramone story for me, "I agree with Jan - at first, there was absolutely NO way I was having radiation...and later, I changed my mind!"
HUH? This isn't exactly agreeing with me. At first I said there was no way I was having surgery - and that's what I ultimately did.
Jan
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Yeah, I suppose I wasn't being clear. I was quoting nanramone who, I believe was trying to illustrate that we sometimes start out convinced we are going to follow one path only to change paths later. She said that is what you did, only you chose to have surgery and she chose (as I did) to have radiation. So I wrote that mine was a nanramone story, then I quoted her.
Does that help or should I just say sorry for the confusion, sorry to derail this thread, and call it a day? ::)
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scheduled for translab surgery 12/08/10 at scripps la jolla
question; for us working folks, how does disability pay and for how long?
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i have already lost all hearing in my right ear due to the 2.1 cm tumor
i have actually thought of not getting treatment and watching it, but i realize now it is too big for that.
i have read how the post op symptoms have left paitents changed forever, especially the 50+ crowd.
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I'm sending you all my best wishes, fav, good luck.
Bear in mind that, regardless of age, regardless of treatment, this tumor thing leaves all of us changed forever. Point? You're in really good company.
Keep us posted.
Mark
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hello,
thank you all for your kind words.
surgery was a success in the fact that they got all the tumor, zero facial numbness or paralysis, no headaches or dizziness.
however, about two weeks post op developed a different type of CSF leak.
no dripping from the nose, ear or wound... instead a lump on the side of my head where in incision is.
its been four weeks and size fluctuates down and up.
my surgeon says it will most likely go away on its own but has given me options; give it time, shunt, or a patch job with glue.
thoughts?
best ....dan
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fav, congrats on a successful surgery (less the CSF). (Having absolutely no personal experience in the aftermath of surgery but after reading of others, I would count yours a successful surgery.) I don't dare offer suggestions on the leak, only congrats on the successful surgery. ;)
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Dan,
I too had the CSF leak with no dripping, etc. I had the lump on the incision side and the doctor (HEI) told me to wait it out, and sure enough after approximately 2 weeks it was gone.
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Dan,
Just to clarify, between the date of the surgery, the lump developing, and the lump going away = approx. 5 weeks.
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hi delgrad
that's encouraging news.
how big was your lump?
mine went away for a day then came back a bit bigger.. it has gone down since i started wearing an ace bandage on it.
thanks
dan
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moderators, please feel free to move this thread to Post Op.
thanks
dan
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moderators, please feel free to move this thread to Post Op.
thanks
dan
Dan
No need as the basic topic is in line with it's current location (Pre-treat) although it may have gone in a different direction. Suggestion is to continue your "journey" here in the "Post-Treatment" section/forum
Phyl
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Hang in there kid...it's tough to have a complication develop after surgery....I'm thinking of you...
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Dan,
From what I remember it was in my opinion a pretty good size lump. It almost felt like half of my head was lumpy on the side of the surgery. The HEI doctor was pretty casual about it, which actually put me at ease. He scheduled a follow up appointment a couple of weeks later and by then it was gone. I never iced it, I just left it alone and that seemed to do the trick.
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thanks degrad.
i am glad it went away in 2 weeks for you.
mine try's to go away but comes back, its been 5 weeks for me but i am going to continue to wait as i really don't want more surgery.
i am really careful not to overdo it now.
i know all about lifting limitations, but i am curious to know what the doctors of other patients here told them about sex. OK or not OK?
best ....dan
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hello all,
i am glad i found this place.
after experiencing sudden hearing loss (total) 10 days ago an mri found a 2cm tumor on the eighth nerve.
the ent wants this addressed asap as do i.
my insurance co will not approve house clinic but has reffered my to a dr. jeffery harris i believe from scripps.
anyone know of him?
thanks
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Hi everyone!
Very much a newbie and making mistakes in trying to navigate this forum but want to say hello and how grateful I am you are all here. I lost my hearing within 6 weeks of going to the dr. for a "stuffy right ear." Thought it was water but learned it was to become tinnitus, the 24/7, roaring, not ringing, kind. That was 5 years ago! MRI was done as well as CT scan but no tumor detected. Last year I started to panic and thought I might be losing my hearing in my left ear. A friend suggested the House Clinic and Dr. House strongly recommended another MRI which Kaiser did not want to do but I insisted. Now, my Kaiser dr. says he is so glad I had this MRI done as it shows an AN but he wanted a better MRI which he says looks like an intracochlear an and now he wants a CT scan.
I'm having a VNG study tomorrow. I have recalled that 6 years ago, before tinnitus and hearing loss, I was constanstly losing my balance but I don't have that today. However, the dr. seemed certain my balance has been effected
I have so many questions and so much more to learn from all of you. At this stage, I want surgery - not radiation as I want this thing out of my noisy little head. I look forward to your feedback, karen