ANA Discussion Forum
General Category => AN Issues => Topic started by: ladythunder on March 31, 2008, 03:22:39 pm
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Hello and greetings from Maine..
I wish I knew what to say other than "wow, I'm glad a place like this exists" and being grateful to finally have a diagnosis as to why I've been so sick for so long; 2 yrs from onset of permanent symptoms to diagnosis.. From what I understand, my symptoms are at the extreme end of the spectrum; I have the instability on my feet, the dizziness, the tinnitus, a lot of ear pain, some really, REALLY bizarre sensations in the ear, sensitivity to sound, and even the vertigo that I'm told isn't so common; yuck..
I have a really weird symptom that hasn't been explained to me and I wonder if anyone else might have it; difficulty reading.. I get so nauseous and dizzy from trying to read..
I will try to be here and be as supportive as I can, but this reading "thing" as I call it makes it very difficult for me.. I wish I understood why it's happening..
Ah well, they say all things take time and I'm sure we'll get to the bottom of this as well..
Anyway, greetings from Maine and thanks for having such a great forum! ;)
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Hi Ladythunder
Welcome to the group. That's quite some title you have. Don't think I want to cross you. As far as the reading issue, I can't say that I experienced any problems like that. I do get tired of reading -- but that came post-surgery.
I do have a question. Have you seen a doctor and been diagnosed? And if so, what type of treatment are you following?
My best
David
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Hi and please don't fear me! ;D
Yes I was diagnosed by MRI in January of this year. The kicker was that the tumor was initially seen on a previous MRI in April 2006 but disregarded as a vascular blush, whatever that is. I think someone in radiology needs to go back and learn how to read an MRI.
I go to Boston this Wed to talk about what my options are; my ENT (God love this man, he has the patience of a saint with what he and I have gone through!) is wondering if what hearing I do have left in that ear is worth saving; he says there's a lot of damage that's been done to the nerves according to my latest ABR and other tests.
From what my husband has found and read to me, GK seems to be a good bet. I'm not big on the idea of someone opening up my poor old noggin and messing with my brain pan. :o
Thanks for the welcome and I hope to be able to send some loving humor along the way.
LT
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ladythunder -
Hi from Illinois! Welcome to the forum; I think you'll like it here; it's a great place :)
It's not surprising that your AN was originally misdiagnosed - it's happened to others - but I'm glad they finally figured out what it was.
you mention you are thinking about GK. Do you know the size of your AN?
Jan
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Hello Ladythunder,
I'm also a Mainiac!! Where in Maine are you from? I was diagnosised in 2006 with a small AN. I also experienced some of the symptoms you have mentioned. Some are still bothersome and others like the dizziness are occuring only once and awhile. Most of the time it happens when I am fatiqued. I have adapted well I think.. Life goes on. I will be a watch and waiter until this thing grows. Thank goodness it is a slow growing tumor.
It is nice to meet someone from Maine on this forum. I found this site almost 1+ years after diagnosis. It gives you a great wealth of information. Again, welcome to the forum. Helen
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Wow! Evening and hello fellow Mainiac! :D
To Leap: I beleive he said it was small.. I was still trying to wrap my mind around the fact that I finally had a diagnosis after 2 years! It's an Intracannalicular one, and he said it's in a weird spot.. I swear, there's the right way, the wrong way and LT's way, which is usually far worse than the wrong way.. ;) I'm hoping Boston can give me some kind of good news, though..
To STAR: I'm smack dab in the middle of the state.. -waving- howdy!
Ooosh, I've worn myself out from all this reading and writing.. Off to bed for me.. Night folks and thanks again for the warm welcomes..
Sweet dreams and well wishes to all..
LT
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Hi
I had my surgery at Mass General in Boston. My ENT Dr. is at Mass Eye & Ear. What hospital are you going to? We may have the same Dr.
Paul
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Hi lady thunder,you said you hope to get some good news in boston ?
I got some for you,IT'S NOT CANCEROUS, YAY !!!
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hello Maniac from a Mass____ :) Ok, will leave it at that! :) Was treated in Boston as well, as well as many that participate on this site. There is a large group of AN'ers here from New England that have had all forms of AN treatments and knowing them, all are great folks to help answers questions and share experiences..... I know GK, in the New England area, is offered at Tufts University and down in Providence, RI. Lots of other radio-treatments offered in the Metro Boston area as well. Great surgical outcomes by many (incuding dear Crazykat/Paul, above) done at MGH/MEEI. Many options available locally...... and hoping that you hang tough and know we are all here to help as best as we can.
Please keep us updated on how your appt goes.......
Welcome!
Phyl
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Hi lady thunder,you said you hope to get some good news in boston ?
I got some for you,IT'S NOT CANCEROUS, YAY !!!
And that is NOT an April Fool's Day joke.
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Hello and welcome Lady Thunder, from another New Englander (Connecticut):
Your dizziness and eye problems relating to your AN are not especially uncommon. You see, although we all suffer from the effects of the same abnormality (acoustic neuroma) the AN can be located in similar but different locations within a small area and of course, as individuals, we all will have slightly different symptoms within a basic range. Pre-treatment (surgery & radiation) I was dizzy, listless, had no appetite and became very fatigued. Other AN patients have similar but slightly different versions of the same symptoms. At least now you know what is causing your symptoms and can deal with it.
Mass General is a great facility with some excellent doctors that understand acoustic neuromas. You should do fine there. I was treated out of the Hospital of Saint Raphael in New Haven. My neurosurgeon - the brilliant Dr. Issac Goodrich - is top-notch and very compassionate. He doesn't push surgery and works closely with a radiation oncologist. PM me for more information, if needed.
Meanwhile, don't strain your eyes but do try to remain in touch with us. We want to help and support you in any way we can. :)
Jim
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Hey all!
I was very relieved when my doc told me it was not cancerous, and it had completely escaped me that it was considered a brain tumor until my neurologist told me. I did the whole "it's a what?" thing the rest of that day, I think. I like the description you all gave it though. "Brain Booger", man that fits! lol :D Wonder if I should get a t-shirt made up saying "proud owner of a brain booger"? :o Oy, that's too much, even for me!
Tomorrow's the day for me! I'm hoping the good news I get from Boston is that I can have the gammaknife or something along that line for treatment; right now, the idea of "brain surgery" seems a little scary. I have noticed in the last few weeks that my right eye twitches and waters a bit now and then, and the side of my mouth is going a bit numb from time to time; it feels like I had dental work done and the novacaine is wearing off, that kind of sensation.
Jim: for some reason, they seemed to think that my difficulty with reading was odd; if they think it's odd hearing about it, they should try to live with it! lol. And thank you for the explanation; no one took the time to tell me about the different types of symptoms we can get. Now I don't feel so weird. It's a relief! Thank you for that.
I was seen by some of the doctors at Mass Eye & Ear, but they completely missed the tumor.. They thought I had some rare migraine disorder type thing, so I did not have the greatest experience with them, with the exception of one doctor; a neuro-opthamologist who asked point blank if they'd ever evaluated me for a tumor, and even told my ENT that he suspected I had one. Needless to say, when I got the diagnosis, I called and let him know. He told me if I ever needed anything to give him a call. He's a wonderful man.
Bah, worn myself out again.. -sigh- If I could at least get this fool dizziness thing to stop, I think I'd actually feel a bit better.
Happy April Fool's Day all! Take care and feel better.
LT
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ladythunder -
good luck tomorrow; I'm hoping you get good news, too :)
Let us know what the doc says,
Jan
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well, I guess I should TM the name of the AN, eh? :)
LT, what are the specifics of your AN? Size? location? do you have the MRI report that outlines its specifics?
for GK.... you don't have listed where you are going for your appt tomorrow in Boston but only Tufts in Boston (Medford) offers GK... (then Providence, RI with Dr. Noren)... the other facilities in town offer all other forms (ie: Trilogy, CK, Proton, FSR, etc)..... hoping you get the answers you seek.
Good luck tomorrow.
Phyl
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Pearl; they have not given me much for specifics and it's really ticking me off. About the only things that I know for sure are that it's small and seems to be located at the entrance to the right internal auditory canal. Maybe that's what the ENT meant by "weird location". Seems like it would be a tight area for something like that to be in and could explain why I'm getting all the symptoms.
Wish I knew more now, but I'm hoping this doctor I'm seeing tomorrow will explain it all to me. I hate being kept in the dark.
LT
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LT -
contact the hospital where you had your MRI done and ask them for a copy of the radiologist's report. My MRI was ordered by my ENT who called with the news that I had a "growth" in my inner ear canal. He didn't elaborate on what this "growth" might be and told me he "didn't know the size of it". Then he promptly referred me to the neurotologist who ultimately did my surgery.
Long story short, before my appointment with the neurotologist, I requested a copy of my MRI report and was able to read all the information the ENT failed to give me. In the report the radiologist speculated that I had either an acoustic neuroma or a meningioma (sp ?). It also gave the exact dimensions of the "growth". Despite the fact that I've known my ENT for more than 28 years, he obviously was uncomfortable giving me the "bad" news.
Hopefully the doc tomorrow will shed some light on the size and location of your AN, but even so, you might want to get a copy of your MRI report. It doesn't hurt to get a copy of the films either.
Jan
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Hi all.. Thanks for the well wishes..
I found out that big city + small town girl = bad mojo! ::)
Well, the surgeon I spoke with yesterday says he sees "something" in there, but he doesn't know what it is. At this time, he's not comfortable with calling it a tumor so he and a neuro radiolist are going to look at it together and see what they think.
Well, I guess that's either good or bad, depending on how you look at it.
He thinks I *may* have multiple problems going on with the ear AND my brain. :'(
One thing good that came out of it is that he was able to explain the difficulty reading; it's this stupid nystagmus. Once again, they're in love with that thing. ::) Whatever floats their boats, I guess.
I need to have another stupid VEMP test done as he thinks there's a possibility I have something called "superior canal dehiscence" , or a hole in the bone somewhere in the semicircular canal area.
He did say that if it's this dehiscence thing, there's a chance that if they fix it, I *might* be able to get my balance back again, but he's not sure yet.
They would like for me to use a wheelchair whenever I leave my house though, because I pretty much have no balance at this time; fat chance of that happening! ;) As long as my legs are working, I'm using them! I'll consider it though.
Leap: I did get a copy of the report and the scans to take to the surgeon in Boston. The report calls it a schwannoma. That's where my confusion comes from: is it or isn't it? The report states no size in cms or mms, only that it's "small and located at the entrance to the right internal auditory canal." I had the scan done at EMMC, maybe Star knows of the place. It's a teaching hospital and I'm wondering if a "newbie" read the thing. Total bonehead move if so.
Now I feel like I'm back at square 1 and that I don't belong here anymore. :'(
Love and thanks to all;
LT
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Hi Ladythunder
Sorry for the late response about EMMC. I'm was away in Maryland. I work at EMMC. That is where I had my MRI's . I also had one in Boston before visiting Dr. Fred Barker, Neurosurgeon. My Neurotologist is at UMass Mem. Dr. Daniel Lee. I have been following with him for any changes. So far things are small on the side of the tumor.
However, I am having more facial numbness, tingling in my lip and lower jaw. I went to a local Neurologist here and in Nov. 07 had a more extensive MRI of the brain and C-Spine. I have a cervical fusion in my neck at level C6-7 done 24 years ago. I now have arthritic changes in the C4-5 area and a protuding disc., centrally at level C5-6. Also noted was a prominent vascular structure crossing the trigeminal nerve at the cistern in the meckel's cave. These things were presented to me as "no acute" changes. I beg to differ! I am having symptoms and the above pathology could be causing my symptoms as well as the presence of a 5x5mm AN located in the IAC. I t was recommended to me by my neurotologist not to pursue radiaton . My case was presented at the Skull Base conference at MGH. Neuroradialogy suggested no to irradiating the tumor because of my facial symptoms. 2. Possibly it was a lipoma vs the AN. 3. To rule out a malignancy from another area in my body . I had every test in the book to r/o out that possibility and all came back negative. Thank God. So for now I am adapting . Having some difficulty days of balance issues mostly and alot of neck and muscle pain. I did try tregretol and neurontin. Side effects were awful!. I am now on a beta-blocker called Atenolol , use to help keep by b/p down and eleviate some of my head pain. So that is my story. I will continue to watch and wait. Next MRI is in Nov.08. I have constant loud tinnitus, fullness in my left ear, and occ. temporal headaches. Initially I had the dizziness and horrible balance issues. My hearing loss is approx, 50-70%. I am more concerned about my facial symptoms . If I lose what servicable hearing I have, I can accept that especially considering my age of 58. I
I hope I haven't bored you with all of this. I would like to hear how you are doing after your appointments. Helen
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Hi again LT
In response to the VEMP test, I didn't have that to rule out superior canal dehisence. I had a CT scan. What they call Stellar Orbit scan. It came back negative for the hole in my temporal bone. Maybe ask about the CT instead of the VEMP test.
Who was your ENT here in Maine? I met with Dr. Bradley Goldstein in Ellsworth.
Take care and if you need to talk. PM me and I'll give you my tel #.
Helen