ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: kathleen anna on August 12, 2010, 05:06:17 am
-
.
--------------------------------------------------------------------------------
Hello.....I am new to this sight and also newly diagnosed with an AN on the 29th of July..(happy birthday to me!!) I have had hearing loss for about 3 years and was told that a virus damaged my nerves. In February, I had a bout of vertigo and have not truly healed....still off balance, still no hearing, and when I turn my head, it feels like it takes a few seconds for my head to focus on what I am looking at, having pain in the left ear, numbness on the left side of my face and on and in my mouth. I went in for a MRI and found the AN on the left side.......I have surgery scheduled (translab) on September 15th. Now here is my "emotional rollercoaster". I thank God every day that this tumor isnt malignant. I know that there are many, many more people in this world that receive horrible diagnosis than an AN. Then on the other hand, I am so tired of physically not feeling good, am scared about the surgery and the recouperation, and I feel guilty feeling this way because I know it could be worse. I have been a single working mom for 14 years and pretty much can handle things that come my way.......usually look at the glass as half full, not empty. But I really am having a hard time with this one! Too many emotions..... Has anyone felt this way and any advise on how to get off this ride?? Thanks.......Kathleen Anna
-
Kathleen Anna, Many,many of us have felt this way! The time before surgery is so hard as one can't be told exactly how it is going to be post op! Once you know post op what effects it has on us does help. Plus makes for a new way of life for us. One does adjust in time and many issues get better in time. How long the time is varies for everyone and may try the patience! So hang in there and be good to yourself now and feel free to talk to us all you need be. We know how scary a time it can be. Cheryl R
-
Kathleen Anna .....
Welcome to this forum of caring, supportive new friends! As Cheryl said so well, most of us on here can well remember the emotional roller coaster we were on after diagnosis of an AN.
Please know that we understand and we care. The best thing that worked for me was to busy myself with fun and/or interesting things to do ..... spend time with family and/or good friends. It also helps to organize your household to make things a little easier post-op.
Best thoughts and many prayers.
Clarice
-
Kathleen Anna .....
The best thing that worked for me was to busy myself with fun and/or interesting things to do ..... spend time with family and/or good friends. It also helps to organize your household to make things a little easier post-op.
I agree with Clarice, it helped to surround myself with good people and staying busy was key. It was still hard and I had to take anti-anxiety meds from time to time, but only on really bad days. Try to do some of the things you love the most, I rollerbladed A LOT! It made me happy and helped my balance. Try to do physical things to help clear your mind. A good dose of endorphins does it every time.
Hang in there and let us know if you need anything...we're here to give advice, share experiences, but also to listen.
Take care,
Liz
-
Hi, you are definitely entitled to these emotions you have an AN and having surgery yes it is benign but it is still major... Just try not to get too stress before the surgery think and do some things that you enjoy and if you need to vent we are all here for you.
From someone who does not like rollercoasters but has been on one for a few years...
Best Wishes,
Pat
-
Hi, Kathleen Anna - and welcome to the ANA discussion forums!
I'm sorry you've been diagnosed with an acoustic neuroma but I can understand the stress you're dealing with and the emotional 'roller coaster' you've described, because we've all felt like that at some point, so what you're experiencing is quite normal. Although we're grateful to learn that the tumor in our head is not cancerous, simply hearing a doctor tell you that you have a 'brain tumor' is shocking and often, life altering. I seriously doubt that anyone hearing those words can remain completely unruffled, so your angst is hardly without cause. That you don't feel well to begin with is clearly a factor in your emotional whiplash.
AN removal surgery is no picnic but techniques have vastly improved and most AN surgical patients do very well with the surgery and enjoy an excellent recovery. The surgery can run from 6 to 12 hours. Mine lasted 9. You'll be 'asleep' during that time so your waiting family and friends will have it the hardest. The hospital stay is approximately 5 days, for most AN patients. The first few days post-op are usually spent sleeping but within 72 hours, the majority of AN surgical patients begin to sit up, walk the halls and generally 'come back'. This was my experience. Following discharge from the hospital, you'll likely not be physically up to doing much but within a week or so, you'll improve. Balance-related PT is often helpful at this time. I had it and it helped. I also did a lot of walking to regain my sense of balance, and that was also very beneficial. The 'average' AN surgical patient returns to work within six weeks, although fatigue is often a factor and if you can stay home longer, it's often a good idea. Complications can arise during and after the surgery, but usually these are transient. Still, we all worry about the unknown, and no doctor can guarantee total success and no complications. If only they could! Alas, we all have to deal with a certain degree of 'unknown' with AN surgery (or radiation) but fortunately, you've found a great place to vent, ask questions or just read about other AN patient's stories and, we hope, find some solace and maybe a bit of inspiration. I hope you'll consider the AN forums as a resource and the people that post here as 'family'. We care about you and want to help in whatever way we can. Please don't hesitate to post when you feel you need too. We'll be here for you. We don't second-guess or judge, we just want to support you and whatever decisions you make. I look forward to seeing your posts. :)
Jim
-
Hi Kathleen Anna,
Yes, I can totally relate to your feelings and they are NORMAL!
Believe it or not, I was actually relieved to learn of my AN, because I had been feeling crummy for YEARS, and didn't know why. And I DID feel better after surgery. I could actually think clearer, I was able to enjoy morning coffee, without feeling like I had to go back to bed.
I'm optimistic for you that you will feel sooo much better once you get the booger out of your brain! Attitude has a lot to do with it so continue to think pos with your glass half full and you will do fine. Really, once the surgery is over and you recuperate (which can take anywhere from 2 weeks to 1 month to 2 months (every one is different :) ) youlll be on your way.
Sorry for the crummy birthday gift, but look at it on the positive side. You know it is there and it is treatable, and hopefully you will be on the road to feeling better after surgery. Majority of cases have minimal side effects. If you feel the anxiety is getting to be too much, don't hesitate to ask your doctor for a little help along the way, OK?
We're here for you. give us more specifics if you haven't about where the surgery is, size, etc.... Good info from JIM!
Maureen
-
I sure as hell do NOT feel guilty for being terrified and climbing the walls over my AN.
I do know I did have my childhood and things could be worst. But when I whack my finger with a hammer. I get really pissed off. Not cuz I'm selfish. Cuz it totally sucks.
Who cares if you have a pity party. Do it. You can only feel sorry for yourself for so long before you get bored with it.
As for your birthday. Your 2010 birthday, you will never forget. And you have me beat. My Initials are BP and July 13 is when I found out about my AN and the day BP capped the well. Its been a bad year for me too. I think someone put the voodoo on BP and hit me instead.
I'm still waiting on a date. So atleast your one step ahead of me.
-
Kathleen Anna,
Welcome to our world of "normal," but sorry about the dues you had to pay to join! What you are feeling is right on target. First the diagnosis and then a barrage of important decisions to make, with all the worries that come with it. Then you end up w/information overload as you try to understand the tumor and the treatment. The good news is that this is the right place to get answers. Whatever your question or situation, one or several of the forumites have been there/done that. Use us get answers, encouragement, or just plain whine! You are under a lot of pressure and you need to talk to people who "get it." ;)
Priscilla
-
I've seen those older roller coasters where they have two coasters that run side by side . . .
(Over at King's Dominion I beileve it was called the Gemini . . . and I also believe they started running it BACKWARDS later in its lifespan to try and get more riders)
Anyway --- I'm right there with you. . . on the parallel rollercoaster journey.
Very similar symptoms.
You were diagnosed several weeks later than me but are getting surgery only 6 days after me!
Things are really moving fast for you!
I don't know about you, but I'm kind of a mess myself. A lot of it is of my own making though, since I have told very few people what's going on with me.
I actually went about 4 weeks without telling anyone about it.
That's something that is likely to change by the end of this upcoming week as I think there will be a general announcement.
It has me a little concerned because for some reason it is the expressions of sympathy and offerings of help from friends (as they all know I essentially don't have any close family) that throws me into an emotional spiral.
I don't know how much helpI can be, but if you want to talk to someone riding the twin rollercoaster at the same time as you, feel free to drop me a line.
Scott
-
I don't know about you, but I'm kind of a mess myself. A lot of it is of my own making though, since I have told very few people what's going on with me.
I actually went about 4 weeks without telling anyone about it.
I tell everyone. Get lots of sympathy and ahhhhhhs. Lots of people saying they will pray. Even had a permit for construction work on my home that was going to run out soon. Was able to say with a strait face "I have brain cancer and can I get a break?" and got a full one year extra on the permit for no charge.
-
Kathleen Anna:
Welcome to this forum, although I think the membership requirement is a bummer.
When I got my diagnosis, I got right on that rollercoaster, front seat. (My diagnosis came very near my birthday, too, check out "Guess what I got for my birthday . . .")
Anyway, this forum is an excellent place to spill your guts, question, whine, proclaim your victories, whatever. Most of all, know that you are not alone. Check in often, let us know how you're doing, let us know how we can help. :)
-
Was able to say with a strait face "I have brain cancer and can I get a break?" and got a full one year extra on the permit for no charge.
Just wanted to clarify here that an Acoustic Neuroma isn't cancerous. Statistically 99.9% of ANs are benign.
You have a brain tumor, you don't have brain cancer. Two ENTIRELY different things.
Jan
-
Im glad you pointed that out Jan. Dont want any newbies getting the wrong idea about AN's. Very reassuring :)
Louise. x
-
Was able to say with a strait face "I have brain cancer and can I get a break?" and got a full one year extra on the permit for no charge.
Just wanted to clarify here that an Acoustic Neuroma isn't cancerous. Statistically 99.9% of ANs are benign.
You have a brain tumor, you don't have brain cancer. Two ENTIRELY different things.
Jan
Sorry. I'm a newbie 4sure.
-
Nothing wrong with being a newbie, Funnydream ;D
I was one once myself - and I've learned a lot in my years on the Forum.
Just didn't want to freak anyone out with the thought that their AN is cancerous - since the vast majority aren't.
Jan
-
The problem you are having with your eyes is similar to what a lot of us go through. Your balancing systems are operating out of their normal profile. Your vestibular system is being compromised by the tumor, and it is telling your brain that you are not vertical or horizontal, or what ever you really are at the moment. Your balancing system in your muscles are not compromised and neither are your eyes, but they conflict with your ears...so you stagger, or get dizzy, trying to get all 3 to agree on what is really going on. The majority of your balancing is probably being done with your eyes, and they are just over worked...turn your head side to side like at a stop sign looking for traffic, and it takes forever for you to recognize what you are looking at. As long as that vestibular nerve is compromised, you will have that problem. I had translab 5 months ago, and still have that same problem, but not as bad as it was at first. Your doctor can give you exercises that will help you with this problem. This just takes a lot of time to get better.
Try this to test your balance. Have someone with you in case you start to fall. Close your eyes and walk about 10 steps, and then you will realize how important your eyes are to keeping you top side up. Walk backwards with your eyes closed. Walk heel to toe. Stand on one foot.
It really gets better following surgery. Get in the best physical shape prior to your surgery...you will recover faster. And stay in shape, it will make your life better. Good luck to you and your family.
James
-
Thank you for all your words of encouragement......I have some questions about some of the symptoms that I am experiencing. Headaches that are more like "pressure aches" across the back of my head and across my forehead and eyes, then feel a little nauseas, then it goes away. But it happens quite frequently throughout the day. I have always had the pain in the left ear, but this headache/pressure feeling has only been happening for about a month now. Has anyone experienced this? Cant say its a horrible headache, but it is very uncomfortable and does hurt.
Surgery is scheduled on Sept 15th at Univ of Penn with Drs. Judy and Bigelow. Has anyone heard of them? I am told that there is slight brain stem compression and am wondering if this is causing this feeling? Thanks for any input! Kathleen Anna
-
I have the neck pain too. More like left side of my head pain were I have muscles that are being worked.
Since my eye and mouth are dry. I figure my muscles are dry too and that's why they hurt.
I am NOT a doctor. So its only Joe public speculation at best.
-
Hi Kathleen Anna,
I'm sorry I don't know about Penn or either of those doctors. Hopefully someone else here can help you out. My own desires to learn about my doctors has actually taken me down a different roller coaster ride.... to the point that I'm considering backing out of the scheduled surgery. I had some sense of relief knowing what the general path was that I was going to take, but that sorta went to hell on me as I became less sure.
I do believe what everyone here seems to say - you should be comfortable with your doctors. Even if everyone tells you they are good, but you don't have a good feeling about it . . .trust your feelings. It will be better for your mental health if you don't do something you don't feel is right.
At the beginning of this thread, I claimed I was on a twin roller coaster ride with you, but it seems like your ride as far a physical symptoms goes is a little more severe than mine.
While my unilateral hearing loss has been getting progressively worse for several years, it did take a sudden turn for the worse over one weekend.
That's when the balance issues and loud tinnitus kicked in. I don't know why they suddenly got worse. Maybe the plane ride caused something to shift? (Not unlike tectonic plates on the earth's crust that build up pressure and then suddenly let go with an earthquake.) Maybe my nerves finally gave up in that game of tug of war with the tumor. Maybe it just started growing faster...
The idea that it is going through a growth spurt bothers me. I feel like the fullness in my ear has gotten markedly worse over the past month and a half . . . since I found out about this AN. It could be all psychological though - since I now know about the ping pong ball that's back there deep in my ear.
Sorry - I've turned this into a story about me.
As for you . .. Sept 15th isn't THAT far away.
If you feel good about the doctors that are going to do the surgery . . . then do you think you can tough it out?
If not, then perhaps you should talk to them about the escalation of your symptoms.
They may know of something that can help.
Who knows. . . a dose of steroids or something to reduce any inflammation you might be having...(once again. .I'm not a doctor)
Good luck to you Kathleen Anna.
Feel free to vent more or ask more questions.
We are here for you.
Scott
-
I have the neck pain too. More like left side of my head pain were I have muscles that are being worked.
Since my eye and mouth are dry. I figure my muscles are dry too and that's why they hurt.
I am NOT a doctor. So its only Joe public speculation at best.
Dry eye I understand.... damaged nerves either make it so that your eye doesn't produce tears or you don't blink and so you don't spread the tears around and so your eye dries out.
I suppose if a nerve caused a tear duct to stop making tears, it isn't too much of a stretch to think a damaged nerve could cause a salivary gland could stop making saliva, and result in a dry mouth.
Dry muscle?
What would a Dry Muscle be?
-
Funnydream -
suggestion for you.
Contact the ANA and ask them to send you their informational brochures. They are a wonderful resource and will explain a lot of things about ANs. I highly recommend them and I'm confident you'd find them very helpful.
Best,
Jan
-
Hi Scott.................it is funny that you mentioned the psychological aspect of these feelings. I was just thinking of this earlier in the week. For so long, I have kept alot of these symptoms to myself because there always seemed to be something going on with my head, ears, balance, etc that I didnt want to sound like a hypocondriac. But now that I know what is causing these feelings, I am wondering if the pressure that I am feeling is knowing that the tumor is in there........I have a great support system with family and friends. I hope that when you make your announcement, that you will accept their support......as the saying goes..."thats what friends are for". I am wishing that the surgery date was sooner......this waiting is certainly wearing on my nerves......Are you on the internet alot? I feel like I cant get enough information about this subject. I feel at this point that it is consuming my life and I cant wait until is is over with and I can start to heal and move on. I feel like I am in limbo right now! UGH!
Take Care and please keep in touch!....................Kathleen Anna
-
For so long, I have kept alot of these symptoms to myself because there always seemed to be something going on with my head, ears, balance, etc that I didnt want to sound like a hypocondriac.
I feel like I am in limbo right now! UGH!
Kathleen Anna,
I can relate to your post! I also felt like a hypochondriac for years prior to my diagnoses.
I would just fall asleep in the car on road trips, and just felt this unease with the balance/dizziness. I was actually relieved to know what was causing all these symptoms and I just wanted the thing OUT. The limbo stage is surreal,as is probably all this time before and some time to come.
Sept is around the corner, try and stay busy and focused and do things for yourself. If you exercise, do that as much as possible too. Will help in the recovery. Plan ahead, start Christmas shopping early! :D
Hang in there,
Maureen
-
I feel like I've fallen back into limbo.
Several weeks ago I knew exactly what my plan was and was busy trying to find out what I should expect.
What's the pre-op like?
What's anesthesia like?
What's the post op like?
How long will I be in the hospital?
When will friends be able to see me?
When will I get to go home?
Once I get home, how much help will I need? (which is important to me since I live along and have to let some friends know what to expect)
How long will I be out of work?
When will I be able to drive again?
and on and on and on
Unfortunately for me . . . my quest to answer these questions led me to find people who had been seen at the same place, and by the same doctors if possible.
I say unfortunately, because the more I looked, the more caution flags started waving around.
And yes. . . I frequently stay up WAY too late reading all this stuff.
While I now have somewhat of an idea of what to expect in surgery and recovery, I have also pretty much decided to ditch my neurosurgeon and find a new one.
Whether that's at Hopkins, Georgetown or House, or somewhere else ... I don't know.
And so . . . I'm back in limbo . . . with tumor that's giving me an earful all the time.
Rollercoaster analogies abound.
Scott
-
Scott -
lots of people find that all the information on the Forum can be very overwhelming - especially when they are trying to make their treatment decision, which is probably THE hardest part of the AN Journey.
As a result, lots of them step back and take a break from their fact finding; regroup, and then come back here for more.
Most ANs are very slow growing, so taking your time to fully assess your situation, educate yourself, weigh the pros and cons of treatments, etc., is something you can definitely do.
You also have to keep in mind that while all of us seem to experience certain things on our AN Journey, not everyone here is the same. We are all unique in some way. So, while you should ask the questions you are asking (listed in your post) you shouldn't come to expect that your experience will be 100% identical to any one of ours.
For example, it's very helpful to ask how long you will be out of work, but the answers widely vary. I was one who returned to work part-time 2 1/2 weeks after surgery, but that's me. Others returned sooner, others returned later, still others unfortunately didn't return to work and had to go on disability.
My point here is, arm yourself with knowledge and know what to expect, but also realize that your experience may be totally different (better OR worse) that any given person here.
I could be absolutely wrong here, but from reading your posts, I get the sense that you (like me) are a bit of a control-freak (not a bad thing). I tried desperately to control everything about my AN Journey, but in the end I realized it was futile. You can't control things like this. All you can do is research it, educate yourself, make the best choice you can make, and then put yourself into the hands of God (or fate - whichever you believe in) - and some very capable doctors.
Jan
-
I agree with what a lot of what you are saying Jan.
Funny - before you wrote this I said to myself "I gotta get away from all this AN stuff. I gotta get away from this computer"
So went out and mowed the yard and some other stuff.
Of course when I got back . . . there's messages waiting. I couldn't bring myself NOT to read them.
Yeah- I don't think anyone likes being called a control freak, or a pessimist.... but I can understand where that comes from.
The way I work is that I look at possible outcomes and then try and see if there are ways to increase, or decrease the possibility of those outcomes to my liking.
If there isn't a way to shift things in the direction that I want, so be it.
At least I won't be surprised though.
I've read about and watched videos of post-op AN patients who said things like "I had no idea." or "I wasn't prepared for this at all."
I don't want that to be me.
I don't want to look back and think ... jeeze, if I had just done a little bit of research, I'd have known about this possibility.
I'm pretty saturated at the moment . . . so taking a break from AN research is probably a good idea.
That being said . . . I do have an external deadline here.
If I'm going to back out of the Hopkins surgery, I don't have that much time to do it.
One might say . . . "sounds like you've already decided to back out. What are you waiting for? Just tell them."
Good question.
I don't know why I'm acting this way.
Feels kind of like when you quit your job . . .you are pretty sure one of those interviews is going to pan out, but you don't want to tell your boss until you actually have the offer from the new job.
Stupid way to act . . .I know.
Maybe it is just psychological.
For a number of weeks, I had the anchor point of the Sept. 9th surgery date.
If I don't have another anchor point (another surgery date) then I will sort of feel like I'm adrift again.
Make sense?
Scott.
-
Scott, I have NF2 and have gone thru 3 tumors and 4 surgeries, Every surgery has some way it has felt a bit different than the others. I have read here of some who had a worse immediate post op feel and some who have better. It all varies. Part will be what effect your tumor has already had on the nerves. Part is tumor location. Biggest thing I have found that it all does get better in time and one can't push your self to prove you will have a normal life again as you will. There may be some adjustments and we learn how to do that. I have been very happy with my Univ of Iowa care and did get what ever follow up care I have needed depending on what my need has been. I was a basket case prior to my very first surgery way back in 2001 as the forum was not around and I knew of no one who had had this surgery. This was even while working as a nurse at a smaller hospital. My tumor on the other side did not even show up till 2 yrs later to find out I was NF2. The time before surgery as has been said is the hardest when one does not know how it is all going to turn out. You have to do what ever feels right to you! Cheryl R
-
I've read about and watched videos of post-op AN patients who said things like "I had no idea." or "I wasn't prepared for this at all."
Scott -
your post makes total sense and if it makes you feel any better, most of us have been where you are at now. Once you make your treatment decision and are confident about that, you should find some peace. At least that's how it worked for me.
As far as being the patient who says "I had no idea" or "I wasn't prepared for this at all", all I can say is that a good doctor will help you with this.
Before my AN surgery, I had no idea that the ANA or the ANA Discussion Forum even existed. I had never met (virtually or otherwise) another soul who had an acoustic neuroma. I had to rely on my doctor to tell me everything, and believe me, he did. He gave me every little possible scenario of the results from both radiation and surgery (since I was a candidate for both) and he told me things that pretty much scared the hell out of me. But in the end I wouldn't have wanted it any other way. I was prepared for anything that could possible come my way.
You want a doctor who will be honest with you and you also want a doctor you feel totally comfortable with. Like Cheryl said, you should do whatever feels right to you. If the surgery on September 9th doesn't feel right, IMO you should cancel it. You can always reschedule. But don't go through with it if you are going to end up second-guessing yourself.
Jan