ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: Sobes on November 06, 2009, 12:11:03 pm
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Hello from WI everyone!
I have a date set for middle fossa on Dec. 22 with Dr Pyle and Dr Baskaya in Madison, WI:) Will be so wonderful to be on the other side of this! It seems as though a few of my symptoms have gotten worse since diagnosis (last few days actually). Mainly the balance issue...it is quite bad at times :( This brings me to ask a few questions: Knowing now that this AN exists:
- Is it possible that I am creating almost a "placebo" effect...thinking things are or have gotten worse just knowing it's there?
OR
- Could the tumor actually be growing a little?
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Yes and yes. There is the possibilty of both of those! Plus it wouldn't need to be much more of growing to cause more symptoms. Your other side might be working harder now to compensate for what is happening to the balance nerve with that darn tumor causing problems. Plus once we have become aware of what is going on and it is not all in our imagination makes it worse! Hang in there and know the end is in sight for getting rid of it. Keep walking to work on balance even when it is hard. I wish you well! Cheryl R
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As Cheryl said - yes and yes. I found that, once I knew I had a balance problem, I noticed all kinds of things that I hadn't noticed before. Whereas before, I might chalk it up to being a klutz, after diagnosis, every stumble became an AN related event. :)
Glad you have a date. If you're like most of us, you'll have a million other questions between now and then - so ask away.
Debbi
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Cheryl and Debbi-
Thank you!! That helps to keep it all in perspective. And yes Debbi, surely there will be many, many more questions! lol ;) It really is good to know that it isn't all just the imagination...all this time I really thought I was going a bit bonkers. That makes the diagnosis bitter-sweet doesn't it?! And of course, it could be SO much worse! Does anyone else here feel overwhelmed (in a good way) by the comfort, support and friendship here? It is so good to know that people still take the time to show they care about others. I am still trying to figure out how to navigate here...getting better though:) I cannot thank you all enough for all of the support and guidance here :'(
Bren~
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Bren ~
Congratulations on obtaining a surgery date. Reaching this point following diagnosis and treatment/doctor research is a major milestone on the 'AN journey'...well that and getting the date entered on our AN Treatment Calendar, which has already been accomplished, so you're good to go. :)
Cheryl and Debbi answered your very relevant questions adequately and I'll agree with them that ANs do grow and because of their location, as Cheryl noted, even a slight expansion can increase your symptoms. However, once made aware of the tumor and it's ramifications on balance and other functions, it's easy to become near-paranoid about even a slight change and immediately assume the AN is growing. Either way, it won't be around much longer! I can clearly recall being in the hospital the days following my (successful - uncomplicated) surgery and wishing it was all far behind me. Now, it is. Time passes and before you know it, this entire episode will be a memory. I'm confident you'll do well. Meanwhile, try to keep busy - and know that many folks around the country (and overseas) will be thinking of and praying for you now, on the Big Day and during your recovery.
Jim
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Bren,
Congratulations on your surgery date!! Although it isn't exactly something to look forward to, it is at least a date that will be the beginning of the end of this. :D
I know you have thought long and hard about this, so I'm sure that you have made the right decision for you.
And I have noticed more symptoms now. Some of them I think I just never noticed before (like how loud sounds HURT my left ear), but I think the dizziness has gotten much worse. I'm attributing it to stress making it worse, but who knows! But as for your symptoms, it could be either. They say these things go through growth spurts, so maybe yours is in one.
Lyn
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Jim~
Thank you so much! :) Is it ok to ask when you may be having another MRI? Do you still have 1 a year or is it more like 1 every 5 years now? So glad to know that you are doing well and thank you for the encouragement. It is really great to know what to potentially expect after surgery. Sure takes a lot of the guess work out of it as well as much of the worry! Have a wonderful weekend and I will continue to update and look forward to reading others' updates as well. :)
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Hey Lyn,
Thank you and same goes for you!! Hopefully we can stay in touch during our time before surgery! Please let me know how everything goes as soon as you are up to it! My prayers will be with you and I will be following right behind:) Did you get my PM? I am very glad surgery is set but wish there wasn't so much time to think about it...know what I mean? I will just work a lot...that will be a good distraction. How are you doing now that you have a date set? How are you doing with your studies?
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Brenda .....
I missed your first posts while my husband was in the hospital. Very belatedly, I want to add my welcome to this forum. You have already found that this is a caring, supportive group of friends who can fully relate to what you are experiencing on your AN journey.
You already have had good answers to your questions. Just wanted to add that sometimes symptoms are temporarily worse due to fluid retention in your tissues. Unless you have other medical issues, you might want to monitor how much salt you are consuming and drink plenty of water.
Best wishes as you plan and prepare for your surgery.
Thoughts and prayers. Clarice
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Brenda, welcome to the group and congrats on the date! You sound like a mirror of myself, as I also have an 8mm on the left side and am getting a Middle Fossa done on Dec 9th. It'll be interesting to compare our recoveries and see how similar or different they will be. I've been getting little dizzy spells ever since I had two major days of the room twirling. And yes, now that I know I have this in my head, EVERYTHING is related to it! And of course, I'm driving my wife and family a little crazy with it! (But not too bad, I hope! lol). Take care and ask away, cuz this forum is awesome for the answers!
Jay
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Clarice~
Thanks for the welcome and the wonderful advice. Now that you mention it...I have been consuming lots of salt lately! That's something I never would have thought of. Do you know why the fluid retention makes symptoms worse? Sorry to hear your husband was in the hospital :( Is he doing ok now? This site is truly a gift and I feel like you are all my new found "family" :) hopefully that doesn't sound too weird ???
Hope your weekend is a great one!
Bren~
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Hi Jay,
It's nice to meet you! Thank you for writing and yes...it will be very interesting to compare our recoveries, etc. Wow, your surgery is right around the corner...how are you feeling? I think I'm driving my hubby a bit crazy too lol!! It has been a challenge for me to not allow this to consume my every thought...how about you? So, I come here to drive all of you crazy instead of taking it all out on my hubby! ;D
I find myself visiting here often (when not at work) so if you want to share please don't hesitate. Would really love to here about your symptoms, how you discovered your AN, etc. Unfortunately I haven't gotten the chance to read too many threads here so I want to do that and get to know everyone's stories! I have met some really special people here and look forward to getting to know many more:) Hope to talk soon and hope you and your family have a super weekend!
Bren~
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Bren ~
To answer your question: I'm on an annual MRI basis (my neurosurgeon is very cautious). I was supposed to have an MRI this year but insurance hassles have delayed it. However, I'm doing well, have no symptoms and the 2008 MRI showed necrosis & some slight shrinkage so he hasn't pushed me to have the next MRI. I'll likely end up having an MRI in December. If not, I'll definitely have it in 2010 (I'm a bit cautious, too). I'm hoping that I can move to a biennial (2 year) or even a quinquennial (5 year) basis because even though the MRI is not a problem for me, physically - I'm not claustrophobic and I have 'good veins' for the Gadolinium injection - my co-pay on the MRI is brutal. I realize the 5 year scenario assumes I'll live a long life, which I have every intention of doing. :)
Jim
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Jim~
Thank you for sharing with me:) Sorry to hear that you have had insurance issues. I have yet to receive the bills from my 7+ hour ER visit:( I really am afraid to open those as my insurance has recently been..."restructured". :( MRI's are soooooo expensive so I am very sorry to hear that your co-pay is so high (I know some of them are a certain % of what the test costs). It is so good to hear you are symptom free but also glad to know that you are cautious and will be getting an MRI:). I look forward to sharing with you here during the next 20+ years!! ;D
Happy Friday :D
Bren~
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Hi Bren .....
I feel the same way about this forum ..... my understanding family, as no one else can. My husband was in the hospital for a heart arrhythmia, which is now under control but it was a scary time. My AN friends here on the forum are fabulous pray-ers and it paid off!! :) Thanks for asking.
Re: fluid retention ..... a doctor treating my migraine-like headaches years ago (long before AN days) told me to watch salt intake because he said when your tissues collect water, your brain does also thus exerting additional pressure, causing headaches to be worse. Not certain if that was his theory or based on fact but it seems to have been true for me. I know my AN symptoms waxed and waned during the course of several months before my diagnosis was made. I did not know I had an AN until it was over 2 cm in size.
Although you did not ask, I had an MRI at six months out, one year out, and will have another at two years out and go from there.
BTW, my husband grew up in Janesville, WI and we used to regularly attend a conference at Green Lake so we are Wisconsin lovers! Actually my father and my maternal grandmother were both born in WI, as well. See how we are all connected???
Best to you, as well.
Clarice
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Hi Bren,
I want to wish you well with your upcoming surgery. I too have my date set, it's December 28th in Boston at Brigham and Women's with Dr. Peter Black. I'll be following in your footsteps. I thank God that I found this forum and this wonderful group of caring, supportive people. I had the privilege to meet a lot of fellow an'ers recently at a brunch held in Worcester, Ma. a few weeks ago. I got valuable first hand information from them. I also went to a support group meeting with other fellow an'ers the month before. The information I got from people helped me out so much in reaching my decision.
I feel the same as you. I wish the surgery date was sooner. I think I'm driving my husband nuts too!! This thing seems to have a way of consuming you! Luckily we have set our dates and we will get thru this and move on.
Take care,
Gingerbread6
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Hi Gb6, (hope that's ok?)
So nice to meet you here!! We will have to be sure to stay in touch during our recovery! We can be a great support for each other :) I will say many prayers for you and will have you in my thoughts as you continue your journey! Isn't this a wonderful forum/place?! Can you imagine going through this without it...the support...goodness...I sure can't! :( I am here almost daily if you need to talk :) I enjoy it...would love to hear your AN story!
Bren~
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- Is it possible that I am creating almost a "placebo" effect...thinking things are or have gotten worse just knowing it's there?
OR
- Could the tumor actually be growing a little?
Hi Bren, I've asked myself this question. I think your looking for things that you normally wouldn't pay much attention to. I'm guilty of this also. My middle fossa is the 16th, 9 more days to go. As Tom Petty says the waiting is the hardest part.
I know it's practically impossible but you just got to keep yourself busy with other things. I find spending a lot of time with toddlers works the best. There in a whole other world then we are. It's a good place to go.
Congrats on your date.
Mike
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There seems to be two groups of people in this topic. Some of the old hands, who I recognize and feel like I have known for years, and a group of newbies all headed for surgery in the coming days. Since I have said hello to none of the newbies, I will do so now.
Bren, Lyn, Jay, Gingerbread6, and Mike, welcome to the forum. Glad you joined us. Best wishes on all your upcoming surgery dates. Despite not posting in any of your topics so far, I have been reading them. Honestly. You all sound like perfectly normal people having perfectly normal reactions to being scheduled for brain surgery. ;)
As for the old hands, hello to you lot too. ;D
Steve
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Thanks for the hello Steve, but you did sort of greet me at some point there a little ways back: I was the one whose radiology report indicated my AN was 8cm, not 8mm...one of the happier mistakes for sure! :) Anyways Brenda, I guess my AN story is pretty much similar to everyone elses. I have had tinnitus in left ear for a few years now. But more recently, since the first of the year, I've noticed my hearing getting worse in that ear. And then out of the blue I had a couple of bad days of dizzyness so I decided to go see an ENT doctor. He did the usual checks, did an audiogram and found my hi freq's were pretty much shot. So he said I could benefit from a hearing aid but wanted me to do an MRI just to rule out any tumors...imagine his surprise when I did show up with one! It's funny, because he's basically a newbie doctor himself, I was his first ever AN diagnosis. It was nice to having to jump through a bunch of hoops to arrive at this point (i've read so many stories of this happening). So now, as you know, I am set for Dec 9th to get this thing out of my head. I still have little moments of dizzyness. Sometimes it gets worse like I stood up too fast. The tinnitus screams in my head a lot and of course the hearing is so so. I made the decision to go middle fossa just for the fact I'd like to retain whatever hearing I can. I won't be too surprised if this doesn't work, based on feedback from a lot of people on here. But i'll be the hands of the infamous Brackmann/Scwartz team so if it can be saved, I have a good shot with those guys. And that...is my AN story! :) Take care!
Jay
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I was the one whose radiology report indicated my AN was 8cm, not 8mm...one of the happier mistakes for sure! :)
I do remember that! :D
Steve
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Hi Bren,
Yes, we will be a great support for each other, and our fellow pre surgery an'ers too. To answer your quesion, I found my "an"completely by accident, if that makes any sense to you. I work at a local country club as a waitress and I couldn't hear my co-workers who were standing to my right! They jokingly told me to get my ears checked. I was also having trouble hearing conversations of the phone. I made an appt. with my GP and she didn't see any signs of an ear infection or blockage and told me that I was too young for age related deafness. Long story short, she sent me to an ENT who diagnosed my an. I felt like I was hit by a truck when he told me the news. The word "benign" stuck in my head, at least it isn't malignant I told myself. But he emphasized that I needed to follow up on it and not let it go. The rest is history..
I got two opinions in Boston and chose Dr. Peter Black. I immediately felt comfortable with him, he has a wonderful demeanor and a truly caring side. He even wrote a book, "Living with a Brain Tumor". I've already read it. It's written for the layperson and explains anything and everything that we as fellow an'ers need to know. He is the chief of Neurosurgery at Brigham and Women's Hospital in Boston as well as a professor at Harvard. He has done over 5000 brain surgeries in his career. He told he has done about 250 for acoustic neuroma's. I went in with a list of 12 questions for him and he he took the time to answer everyone. He told me if I had any further questions that I could call him at this number. He turned over his business card, and wrote down his cell number!! Right there and then I knew that he was the doctor for me. He is world renowed in his field.
We'll all get through our surgeries with flying colors. Keep the faith.
Gingerbread6 (GB6) is fine too!!!