ANA Discussion Forum
General Category => AN Issues => Topic started by: alwaysthere on April 14, 2009, 11:39:20 pm
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I am waiting to see the Dr's at Mayo the first of May and it is driving me insane. Since I have already been diagnosed I am going there to discuss surgery, as I want this thing out of me and the sooner the better.
But, in the meantime the wait is agony. I am now having numbness on the AN side of my face and shooting pains into my head and ear. I went to my family Dr. yesterday just to make sure I didn't have a ear infection. He said after looking in my ear that I had fluid, but he wasn't sure if this was from possible sinus or to do with the tumor. Has anyone else had a problem with fluid? My balance has also been really bad the last week or so. This along with veritgo almost every day. Makes me wonder if the AN is growing.
My nerves are about done for. I still cry at the drop a hat and get teary eyed talking to people if they ask how things are going. I see our lawyer on Monday to have my will updated. I don't know why I feel so strongly about that, but I do. I hope this is all normal feelings and I'm not going off the deep end.
I too worry about the facial nerve and will there be damage. I'm really not that vain about my looks, but can't help being concered anyway. I would love to go to a support group meeting, but since I live in the middle of Missouri, the closest one is about 3 1/2 hrs away. So, all I have is this forum and reading what all of you are going thru or have been thru. That in itself is a big help.
Thanks so much to everyone on this forum, because without it I don't know where I would go for info and help. God Bless you all.
Patty
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Hi Patty,
I understand your concerns completely! I had my surgery 6 weeks ago, and the worst part was waiting for surgery day! Well, maybe trying to decide what treatment option to choose, but both together were way worse than the actual event.
The symptoms you describe sound like AN symptoms. There is a good chance that most of those will abate after surgery. I never had a problem with fluid, so I can't speak much on that front.
It is perfectly normal to feel the way you do now. It's never a bad idea to keep your will updated, but I can just about promise you that you'll get to update it again at some point after surgery. Yeah, not much chance of death with this surgery, no more so than with any other major surgery.
I'm sorry about not having a local support group to help you along, but what about a church group? I know my church has countless support groups for everything under the sun. While I'm sure they won't have an AN group, they may well have a general "illness/wellness" group you could join. I bet your journey so far could help others in that group, who perhaps are facing similar issues.
Not much more to add here, but I will keep you in my prayers!
Ernie
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Patty, Hi - hope you are feeling a little better after maybe getting some rest this morning.
I have felt the stress of waiting for this appointment and that appointment, researching my options and going for 2nd opinions, etc.
Anyway, i hope you can get to MAYO clinic soon - have you considered calling to see if they will contact you if an appointment slot opens up? I actually had a neurosurgeon's office call me back and offer an earlier appointment time (i was shocked!) Sometimes you have to call for an update on a particular day, like Monday morning or Friday. Maybe this will work....
Honestly, i wish i could cry some days - i get real emotional and frustrated, but can't cry very easily.
I agree with Ernie - no wonder you feel the way you do - you have alot going on, and it is perfectly normal.
Lately, i have been trying to do more things for me to 'relax.' I know this is going to be harder for you, since you are already not feeling well. Just try to take one day at a time, maybe rest more when you can, and soon the waiting will be over. I also know that every time i have an appointment, etc., i want to get 'everything in order' prior to that, like clean the house, get laundry done, etc., etc. Maybe you can do a few tasks each day, to help the time go by. I never 'plan' these things, but maybe putting a few tasks each day on the calendar will distract you and get you to the Mayo date! [Even if you don't get every task done, that's ok.]
BTW - kudos to YOU for updating your will! I know i am LONG OVERDUE to do this and have been avoiding it. My sister, on the other hand, has had 3 hip replacement surgeries (not by choice) and was required to do this each time for military insurance. This is an important task to take care of and i believe there are a lot people out there who have not (including me!) So - i will put that on my 'to do list' - thank YOU for the inspiration!
Keep posting - we are all here for you.
I want to go to a support meeting too, and they are about 2 hours away - found out i have to WORK on the next one, geez!
My thoughts and prayers to you and your family.
Sincerely,
Sue
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Hi Patty,
What you are feeling is right on target for your diagnosis! We seem to be programmed to want things fixed now, especially when we get a diagnosis as distressing as an AN. Of course you are stressed out, and what makes it worse is that now you find yourself at the mercy of someone else's schedule--the drs. You got some good advice from Suboo about seeing if you could get an earlier appt. People cancel appts. all the time, so maybe you could get lucky in that regard. In the meantime, see if a good friend, church group, or family member could serve as a sounding board for your fears and frustrations. You definitely do need someone to talk to. And of course, you have this wonderful forum at your beck and call 24/7!!
Hang in there. The waiting truly is the hardest part.
Priscilla
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Patty~
You have received some great reassurances here! I just want to let you know that if you would like to talk on the phone, I would be more than willing to call you. I have unlimited long distance so it certainly is not a problem. Just PM me your number if you are interested! There is no support group where I live not did I have a "Forum Family" for the first 12 years after I have AN surgery so I know how it can be very isolating! I would LOVE to chat with you!!
K :D
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Patty -
if it's any consolation, what you're going through is normal. Anxiety is a big part of the AN journey. Sometimes it's the "what ifs" in life that get ya ;)
Hopefully talking to the doctor's @ Mayo you help ease your fears. I know in my case it just took two very confident, comforting doctors to help calm my nerves; I wish the same for you.
The others had very good advice - I especially like the ideas of trying to schedule an earlier appointment and about keeping busy. And a call to Kay will definitely cheer you up. Another forumite always says Steve has a sunny disposition - and I can't really attest to that (no offense, Steve) - but I think Kay has the best attitude I've come across in years.
I'm not around much during "regular hours" - working, parenting, and now my mom is having back surgery next week - so it's hard to reach me by phone. But I read and answer email at all hours of the night and early morning. Please feel free to contact me.
We are all here for you. Don't hesitate to lean on us; we'll get you through this.
Be strong and keep the faith ;D
Best,
Jan
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Do you have allergies or non-allergic rhinitis? Because this time of year, certainly in Mo., some AN symptoms (headache, fullness, dizziness) could be aggravated by seasonal allergies or barometric pressure changes that affect your sinuses, esp. if their is fluid in your ears.
Stress doesn't help either: Notice you said "My nerves are about shot." There is no question in my mind that "nerves" in the emotional sense exacerbate symptoms. Then we worry more that things are getting worse! It's a vicious circle but a normal part of the process. Just try to accept that symptoms can fluctuate, don't overreact emotionally to each one if you can help it, and there will not be a life-altering change in what's going on in just the next few weeks!
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Boy your post brings back (unpleasant) memories. I really remember that fear and anxiety before surgery. I can remember how every symptom seemed magnified and frightening. Remember these things grow very slowly. Your tumor finally got big enough to cause some sx and so, of course, you notice them. But that doesn't mean things are getting worse day by day. Anxiety can cause some of the symptoms you describe, too.
Everyone on this board came through okay and you will, too. There may be challenges (I have faced some) but life you will come out alive and recover at your own rate.
You have a lot of support here!
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Hi Patty...I am fairly new to all of this (just diagnosed on March 6th) but know that there are alot of supportive people here...I too had issues with meltdowns in the beginning...I hope you find the answers you are looking for
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Patty ~
I can only reiterate what others who got here before me have stated. Your feelings are normal and so are your fears. Facial complications were very much a concern for me, prior to my surgery. I would have to assume this is one of the most common issues pre-surgery AN patients worry about - with good reason. Frankly, at some point, you have to gain control of your emotions or they'll just make everything more difficult. Your determination to have surgery will probably help you gain some emotional control, especially once you have a surgery date. Trusting your doctor(s) will be paramount. If you're confident about your choice of treatment, your doctor's knowledge and, especially, his skill, you should be able to set your sights on your ultimate recovery and lose some of the angst. With your symptoms acting up, this isn't easy, I know. I guess it's an act of will. I expect that you realize you have a better chance of winning Powerball than dying during AN surgery, but having your will up to date is always a good idea, even if it won't be read for many years. Oh, and crying is allowed for AN patients. :)
FWIW, I'm pleased to learn that you appreciate the forums. We expect to be seeing lots of messages from you in the future, especially once you're an official 'postie'.
Jim
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Thanks to all of you for the encouraging words. I think that when you live in a small town and no one has ever heard of something like this it makes it harder. Cancer they have heard of but not Acoustic Neuroma's. I do belong to a great church and am in fact a Deacon and the chairperson of our Health & Wellness Committee. We put health tips in our weekly newsletter and am thinking of putting an article about AN. Not to get sympathy but to educate people on this type of tumor.
After I was told I had Fibromyalgia and other autoimmune prolbems about 5 years ago I started a Arthritis Support Group that is still going strong. So maybe this is my way of getting the word out about AN. I really believe that things happen for a reason.
Some days are just worse than others and yesterday was one of them there days. I did call Mayo to see about getting in sooner and couldn't. But, they did tell me to keep calling back to see.
I think that when a person deicides what they want it's hard to wait, but we have to. Anyway, thanks again for letting me vent. By the way I look forward to being a "postie"
Patty
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Patty,
You already have great advice here, and I don't need to reiterate what was said. Before I sign off, I just want you to know that I had a complete and successful tumor removal on Monday. The average stay is 5 days, but they said I was doing well. So I came home today to a loving wife and three cute kids. I know I and lucky, but I just want you to know that you will get through this just as I did this week. My facial numbness is already subsiding. My balance is not great, but I don't have bad vertigo and minimal pain. Yes, SSD may be an hump to get over, but there are options. Just keep focused as Jim says. May is right around the corner, and these are VERY slow growing tumors. Wishing you the best.
Steve
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Patty -
I like your idea about putting an article in your church bulletin to educate people about ANs. As you say, most people haven't heard of them - even most of us, prior to diagnosis - and I personally like to educate people about ANs - and BAHAs. You never know when the information might be helpful to someone - there are a lot of potential future AN patients out there.
It might also help those you know understand a few changes you might have post op. One of the tough things about some of the surgical side-effects - like the wonkyhead, the drunken walk, and the SSD - is that they are "invisible" to others. Most times even your surgical scar won't be something that's noticeable to others. While this can be very good, it can also be very bad - and not from a "pity perspective". It can be hard for others to realize you aren't "yourself" anymore because on the surface they can't really see anything wrong with you. Frustration and/or depression can end up being very common emotions.
I think the more others understand what you are going through, the more they'll be able to support you.
I should probably clarify my comment about not being "yourself" anymore. Life post AN is good - no doubt about it - but it often brings what we like to refer to as a "new normal". For example, my new normal includes being SSD and sporting a spiffy BAHA 8) - and I'm perfectly okay with that. A little different than I used to be, but perfectly okay ;D
Jan
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I am shocked at how many people are diagnosed with these tumors! Everytime I get on, I see new people! How do you guys keep everyone straight? You are all so good at making us feel like we will make it and we will be ok not matter what happens. I am happy to know with all the bad things going on in the world - there are so many good hearted, supportive people out there. Thank goodness for our computers!
Take care Patty. We will persevere. Alicia
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You are all so good at making us feel like we will make it and we will be ok no matter what happens.
That's because you will be. Try to focus on that.
To quote a very wise and kind man - my neurotologist - you'll be fine.
It's very interesting to me that although he said that to me almost two years ago - and it's not exactly a prophetic or stellar comment - I remember it to this day.
Faith and support are wonderful things that will help you through your AN journey. A positive attitude is another.
Keep your chin up ;D
Jan
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Hi Patty,
Everyone's advice here is so good. I was diagnosed in Nov 08 and felt absolutely fine (scheduled surgery in Jan 09). I kept putting off thinking about the surgery (always seemed far in the future). Then in December, i started feeling more 'wonky headed' and tipsy with ringing noises and all of that. I was convinced my tumor was doubling in size. That went on for a few weeks, then I started feeling a bit more normal again (or getting used to what I was feeling). I was relieved to have the surgery. I asked afterwards if it had grown and it had just a little (like 1 mm). I think there's times when the 'feelings' the AN causes seem more prounounced and we're more aware of them. I think the stress of it all makes it feel worse as well.
I went to an AN support group and it was good, but, since there were so many people and so little time to really delve into issues, I have found that I receive more support on the forum (OOOH NOOO... i'm not trying to knock the support groups and please anyone who's in the one i was in don't take it personally!!) There's just more time here to get so specific, get answers and opinions, and get ongoing support that can be daily. I do hope you get some support in person (whether it's through your church group, etc). I have felt very supported from my church and knowing they were always praying for me.
I think getting your will updated was smart, but not because I think surgery's going to be the end. When I flew somewhere with my husband a couple of years ago, we got our's updated, but not because we thought the plane was going to crash. It's just smart.
Thank you for sharing your feelings about it all. I do hope and pray you have peace. 4
Keri
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Everytime I get on, I see new people! How do you guys keep everyone straight?
There are a lot, aren't there? There are a couple of things that help us all keep up. One is the AN Calendar (see link below), where you and others can post treatment dates and other milestones. The second is the weekly update, put together by David (LADavid) every Sunday. Here is the latest one: http://anausa.org/forum/index.php?topic=9255.0
It's fun and worthwhile at the same time. Most of us started out in the same place you are now, and found others here to help us through the maze. Some of us have now become part of the furniture. :)
Steve
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LOL, Steve. I love the part of the furniture reference. We definitely have a room full of comfortable furniture.
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Hey, wait a minute!
Who are you guys calling furniture?? :D
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I'll let all the sideboards, chairs and tables above me keep chatting, but in the meantime Patty, I just wanted to say I hope you're doing ok with the wait and I totally understand - the last week before my surgery I was really anxious just to get it done. I meant to do something about a will but I forgot - I certainly didn't need it and I don't have anything worthwhile to leave anyone so all good!!
As for your numbness and pains... I too had these before surgery. The shooting pains I put down to the tumour irritating the trigeminal nerve. After surgery the numbness was gone when I woke up and has remained gone and I had a few shooting pains in my ear the first couple of weeks afterwards which I guess was everything just settling down in there, but since then nothing. All fixed!
You're going to be just fine...it's just the waiting which is a pain in the bum. Maybe find a new hobby to take up some time and take your mind off things? I started knitting and that worked a treat, and I've made some nice scarves and hats for friends!
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I did call Mayo to see about getting in sooner and couldn't. But, they did tell me to keep calling back to see.
Patty -
another option, while you're waiting with your appointment with Mayo, might be to consult with the docs at the University of Iowa who treat ANs. They have a very good reputation and, even if you ultimately decide on Mayo, another opinion can't hurt.
Jan
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Hi Patty,
Similar to others, I agree that the waiting and the anxiety of all of this is awful. I needed an anti-anxiety medication so that I could at least eat. That was the best thing I did for myself. Also, when you do meet the doctors, if they are the ones you choose to do this procedure, you will begin to feel calmer. You will be fine. And we will all be here. And there are quite a number of us in this particular orchestra. (A better analogy than furniture, huh? :D) Feel free to PM me at anytime.
Best,
Marci
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And there are quite a number of us in this particular orchestra. (A better analogy than furniture, huh? :D)
Absolutely. Being called a member of an orchestra, IMO, is much nicer than being called a piece of furniture ;)
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You all are a riiot. It's so much fun reading all this. ;D
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You all are a riiot. It's so much fun reading all this. ;D
Well, if nothing else, it gives you something to chuckle about while you wait for your appointment @ Mayo ;)
Signed, The Couch - or is that the Violin ?
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Definitely violin. First violin, and concertmaster, or rather, concertmistress. This means everyone in the orchestra has their eyes on you and watches your every move. Theoretically. Too much pressure???
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Geez. That's a pretty big job :o
Perhaps I should just stick with the first idea and be a couch :D
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You could be a viola player. That's "couch" in musician-ese! :D
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HEY!
I played the viola!! ???
K
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No offense. But you must be used to the viola jokes. There are just as many soprano jokes.
M
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Actually, not really - I only played it in elementary school! Gave up music for athletics and then got hurt!! Go figure...
K
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HIJACKED!
Patty,
That is what happens a lot when the subject totally changes. Funny how it happens.
From people being "furniture" to "orchestra" and then to find out that K played the viola!
It is all in good fun.
Welcome, and it sounds like you are doing better, and that all this good advice/personal experiences of others has helped you.
There is humor here. If you don't laugh, you'll cry. (Okay, so I do a little of both :'( )
I am post op almost 3 years, and never used the forum during the process and post op due to crazy life surrounding the AN.
So now I like to hang around and follow the newbies and give advice when I can .
Keep venting. tis good.
Maureen
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Patty,
Are you logged in? I went to Dr. LInk and Driscoll at Mayo, Mn. Nov. 21st buger came out, when is your app. I would be willing to drive down and meet you, I only live 1 1/2 hours away for MAyo.
You are in great hands, the doctors are great and so is St. Marys hospital.
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Bell,
It's nice to hear from someone who has been there. I will try and send you a pm.
Patty
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Hi Patty ...... as others have said, the waiting can be tough. Same for me back in '04 prior to my retrosig AN. But since then, I've tried to live every day as fully as possible, and try not to think of SSD, etc. Hope you're able to do that, with help from friends here.
Maureen recently said. "So now I like to hang around and follow the newbies and give advice when I can." What'll she think ....3 "newbie" posts in a row .... probably doesn't happen too often.
Keep smiling .... at least give someone one of yours, as they might need it more.
Greg
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OMG there are THREE newbies? I'm slacking! Actually I remember one other one-Greg who are the other 2?
Maureen :D :D
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I would be willing to drive down and meet you, I only live 1 1/2 hours away for MAyo.
Bell -
this is such a great offer; really warms my heart.
Good to see what others are willing to do to help a fellow forumite ;D
Jan
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Well garsch, Maureen ... the other 2 are those just before moi ... Patty & Bell. Just happened to notice :o
Greg
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Its absolutely normal to be anxious. I was too until I was admitted into the hospital, everyone made me feel relaxed. Just take it one day at a time and try to keep a positive attitude. Prayer also helps. If you are hjome try to keep yourself busy either pgysically or mentally.
Lisa :)
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No doubt about it--the waiting is AGONY...My appointment with the neurosurgeon is tomorrow. Originally scheduled for 2:00, they called this a.m. to ask if I would wait until 3:30 or so because he will be backed up. And they said, even at 3:30, expect a long wait! Unbeknownst to those around me, I have been having major butterflies in my stomach about the whole thing and will be very happy to get this appt. over with!
As far as fluid in the ear, I have had that repeatedly and last year around this time, my primary doctor suggested tubes in my ear if it didn't clear up, which it did after a round of antibiotics.
For me, a nice quiet cup of tea at 3:00 is a great way to relax, let loose and then pull things together.
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Kabby, I'm like you. After I finally see the Dr. I think I will feel lots better. I see mine next week. Man, it sure has been a long wait too.
Patty
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Patty,
Right there with you on the emotional rollercoaster. Thought I would feel better after meeting my neurosurgeon and consulting on everything.(it was a week ago today). And I DID feel better. For about 3 days. Then, I had one super duper GREAT day, where I swore I was going to make it through this all positive and happy. I felt calm and people around me actually commented that I was making THEM feel better about it.
Well, I guess I was a little too smug because the last 3 days have been really down in the dumps and noticing things I never noticed before. Two months ago when I heard the news 'AN', I swore up and down to my doctor that I only had one single symptom, and a very minor one at that (slight hearing loss). Funny how in the last two months I now know that I have dizziness, balance issues, ringing in my ear occasionally, fullness in my ear occasionally, Trigeminal nerve shocking up the side of my face, and now- today's new one-blurry left eye. Maybe it's because I've poked myself repeatedly in denial that it doesn't have the normal reflex to close (blurriness would seem like a normal response to being poked/proded too many times!), and yet my paranoia is taking over and I"m SURE it's because my AN is actively growing (along with my imagination.....). I have a call in to my neurologist as we speak.
In short (or not so short?). I'm RIGHT THERE WITH YOU. Hope that makes you feel a *tiny* bit better. We're on this road together, traveling a similar path.....
(hugs) while you go through the journey. Hope I didn't make myself sound like too much of a mental case! LOL I'm really pretty normal. Really, I am......
Adrienne
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Hello Adrienne,
You are right that knowing about the diagnosis can make you more aware of your symptoms. More worrying means more stress, which in turn can increase the intensity of your symptoms. It is a vicious circle.
I noticed that you mentioned that your eye is blurry. Are you currently using drops for dry eye? Since you are experiencing trigeminal issues, you most likely have reduced corneal sensation, meaning that your cornea is not able to keep the moisture in the eye at appropriate levels and doesn't produce enough tears. This can cause severe dry eye. I had this problem for several months (leading to severely irritated eye that I thought was due to my allergies). After I started using the eye drops the problem resolved.
Oh, and by the way, the size of my AN was also underestimated by the radiologist (he wrote 2.4 cm in his original report), whereas in reality it was more like 3 cm. Imagine my shock when I first did the measurements myself.
You are in good hands with Dr. Akagami, I have heard excellent things about him and his rates of success on the ANAC (Canadian ANA) forum. You might want to check with the people that have posted there about him. Everything will be OK.
Marianna
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Hi Adrienne and Patty,
I was diagnosed in November. At first I felt fine, figured I'd just do the watch and wait. But then I was advised to have it surgically removed and I was comfortable with that deciision. I had felt absolutely fine, except for my hearing loss that led me to the discovery in the first place. After a month or so, I really started feeling more symptoms. I figured it was doubling in size. I would get on the forum and ask everyone if I was crazy... now I was feeling dizzy and wonky headed with lots of noises and ringing. Some of the wonkiness subsided before surgery or maybe I just got used to it. Anyway, I don't whether it's that we're just being more hyper aware of symptoms, but this seems to be natural.
You both have our support and prayers as you wait. Hang in there.
Keri