ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: DLM4me on March 14, 2009, 11:07:15 am
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Hello. I don't normally register on a forum and immediately start posting new threads, but this is different. I'm scheduled for surgery in early April and I'm REALLY scared, for a number of reasons.
First, some details. About 5-6 years ago (in my 40s) I started having inexplicable episodes of losing my balance. My primary doctor ordered a brain MRI w/contrast, but it showed nothing, so she couldn't explain it. We plodded along baffled about the balance issues but just basically living with it. I fell 3 times and broke bones 3 times. More tests were done along the way but revealed nothing.
Last fall I was losing my balance even more than usual and I started feeling like my right ear was plugged or blocked or something; I was losing hearing in it, and had developed HORRIBLE, continuous, loud tinnitus in that ear. I was dealing with personal tragedies at the time and couldn't be bothered with seeking care, so I let it go. In January I finally saw my primary doc (not the same one as before--I've moved since then); she said there was fluid behind my right eardrum and that was causing the problems. We spent more than a month trying various meds (decongestants, antihistamines) to drain/dry up the fluid. I finally called and told her there wasn't one iota's improvement. She then sent me to an ENT.
I went in to see him thinking that WORST CASE SCENARIO I might need minor surgery for tubes to drain the fluid. But after he and his associate both examined me and did extensive testing, they not only found no fluid but also could see no obvious explanation for my symptoms. Another brain MRI w/contrast was ordered. I had it on a Friday; the ENT called me on Monday with the news: I have an acoustic neuroma and it needs to come out soon. He sent me to House Ear Institute in L.A. where I saw Dr Brackmann and one of his associates. After reviewing the films and report, they completely agreed with the radiologist and the ENT. We discussed options and because of its size, location, and involvement with surrounding nerves, the only feasible option for me is surgery to remove the tumor.
So here we are! We agreed on early April to allow time for family members to make travel arrangements and organize things at work.
Right now, it's looking like they're leaning toward translabyrinthine but I want to ATTEMPT to preserve whatever hearing I may still have in that ear, so I'm hoping for middle fossa. I'm seeing the internist who'll be on my case on March 30 for a physical and lab work, then I'll meet with Dr Brackmann and the neurosurgeon for a final pre-op visit the day before surgery.
Aside from this being brain surgery, which is frightening enough!, I'm really worried about the aftermath. Specifically, since the dizziness is already AWFUL (I basically spend my day lying down now), and I know they're going to remove the vestibular nerve on the right, I can't even imagine what it's going to be like post-op. They're saying that the left side will eventually learn to compensate and I'll relearn how to balance, but in the meantime...what? I've already fallen and broken bones three times; I am NOT looking forward to more falls.
Sorry for the ungodly length of this post! I'm very worried and I guess I just need some reassurance from people who've been there. What was it like relearning how to balance? What about preservation of hearing? Is it OKAY to tell the doctors which approach I prefer?! (If middle fossa isn't feasible, of course I wouldn't insist on it.)
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Well Hello,
Sounds like you have an acoustic neuroma. Welcome to the club. :)
If they are saying it needs to come out soon, it may be too big for middle fossa. Do you know what size it is? I think middle fossa is usually limited to 2cm (20mm) or smaller.
When they take out the balance nerve on one side, most patients adapt within a month or two. It is actually easier for the brain to make sense of one good signal, rather than one good one and one scrambled one, so hopefully it will not be a long term problem.
The main thing is that these tumors are benign and treatable, and you will get through it all fine. Things may be a little different afterwards, but you will still have lots of living left to do.
Take a deep breath and relax a little. You've got AN friends now. :)
Steve
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Thanks, Steve. :)
The neuroma is only 4x12mm as of the MRI two weeks ago, so middle fossa is still a possibility. The deciding factor will be whether it can be completely removed via that approach.
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4X12 mm isn't that large, and a bit smaller than mine when I had retrosigmoid. I noticed you didn't mention radiation, but that could be because of the balance issues you are having. Probably best to remove the nerve than leave it mis-firing. Others can help you with radiation outcomes when it comes to balance.
I am wondering why they didn't recommend retrosigmoid approach to try to save the hearing though. It's probably only a 50/50 proposition, and in my case, the tumor was just to sticky to save the nerve. I'm no quite two weeks post op yet, so no telling how I'll adapt to being SSD (single side deaf), but so far I'm ok.
I didn't have the balance issues pre-surgery, but have some now as my brain adapts to using just one side. I have not fallen though, so I have to side with Steve in saying it's better to have the brain concentrating on one good signal than receiving false signals from a misfiring one.
Ernie
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Hi DLM4me,
I would like to say Welcome to the forum! I have never posted on any other forum either, but please know that this is THE PLACE to be! ;)
There are SO MANY WONDERFUL FOLKS here with so much information!
I am sorry you had to join the the AN 'club.' But you are among friends, most who can say 'been there done that.'
For me, i am still in W & W mode - i don't have any advice about surgery, balance issues, etc. BUT THERE ARE MANY HERE THAT DO.
For example - One forumite, Helene (aka Catlover), is from Sweden. If i understand correctly, they always cut the balance nerve in that country, after the surgeon gives a shot to 'kill' the nerve. She does exercises for learning the new 'balance,' as i'm sure many others here do too!
There is alot of information here, but it hard to absorb all at once -- Try to take breaks when you can, ok?
Looks like your AN is small - there are those here that will say 'small but mighty.' In my surgery consult at Hopkins, the surgeon urged me to do something soon since it my AN is smaller. Sounds like you are taking action promptly - a positive attitude, despite the challenges.
I am so glad your family members are coming to help you. My family, including me, helped my younger sister thru 3 hip replacement surgeries.
My thoughts and prayers are with you in this journey.
Sincerely,
Sue
PS Keep posting - we are here for you.
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DLM4me ~
Although I'm sorry you have an acoustic neuroma to deal with, I want to add my welcome to our little corner of the internet. As my fellow moderator, Steve ('sgerrard'), stated, you've got AN friends, now. :)
I try to caution newly diagnosed AN patients that - as much as we all wish it were not so - surgical outcomes (or irradiation outcomes, for that matter) simply cannot be guaranteed and there is no credible template by which to to gauge your (prospective) recovery. 'Ballpark' estimates are the best anyone can do. Generally, just as Steve stated, it's easier for your brain to compensate and adjust for clear input from one normally-functioning balance nerve than trying to decipher the input from one functioning balance nerve and one malfunctioning balance nerve sending scrambled signals. To answer your pertinent question regarding the time needed to 're-learn' balance, post-op, "a month or two", again, as Steve stated, is usually the norm - but with the caveat that 'individual results may vary'. Most post-op AN patients have to do some PT and practice a bit to help their brain re-gain balancing functions but it usually does return. Using a walker or a cane while you work to rehabilitate your balance is probably a prudent thing to consider and can help you avoid any more falls and broken bones. Realistically, you may always have some minor balance deficits. I do, and I had a very successful surgery, plus radiation - and a splendid recovery. However, my balance is very serviceable and you would never know that I'm operating on one balance nerve. It's only if I happen to stumble (very rarely) that I may have some difficulty quickly regaining my equilibrium. Walking backwards is still a minor challenge, but not one that I have to deal with very often. I consider myself to have about 85% of my former balance function, and that works for me. :)
As for the preservation of hearing, that's a tough one, too. Generally, what hearing you have going into the surgery (assuming you don't undergo Translab) is close to what you'll have coming out, but, yet again - that is an estimate based on others experience and cannot be guaranteed. Realistically, during AN removal surgery there is always some risk of losing all hearing in the AN-affected ear, as your doctor will likely warn you. Fortunately, there are now specialized bone-anchored hearing aids (BAHA) that can greatly help hearing in those who are SSD (Single-Side Deaf).
Please don't apologize for the length of your post. Good questions and explanations take more than a few lines and, as a notoriously verbose forum habitué (aka 'forumite') I have no problem with reading slightly longer messages. I trust this forum will be a resource for you as you go through your 'AN Journey' as we like to call it (well, I do, anyway). We want to help. :)
Jim
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Like everyone else said welcome!!... There are so many of us that have felt the fear associated with this issue. I did not have the balance issues but I did have what I call bad eye twitches where the whole mental picture would jump to the right and left very quickly... I knew that left untreated it would just get worse and after my surgery I have not had 1 incident, thank God!!! I wish I would of posted on this site before my surgery, but honestly I was just afraid...
There are so many wonderful people here that have been through this and are just an encouragement during this difficult time. Now for the great news... I am 5 months post op and feel wonderful.. I actually forget, that I have SSD. There are so many of us that have crossed that bridge and pretty much back to normal.... So don't let it get to you too down and share your feelings, people here actually care and offer encouraging advice!! Keep us updated!!
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Hi, DLM4me,
Welcome to this forum! I gather that you live in the L.A. area since you actually went to House in person for a consultation. There are quite a few House "alumni" on this forum -- I'm one, and can assure you that you're going to a wonderful place and will receive top-notch treatment (that being said, I'd like to add that there are many, many excellent AN surgeons and treatment centers throughout the country, and you'll find their satisfied patients on this forum as well).
I live in New Jersey and am delighted that I made the cross-country trek a little over a year ago for my translab procedure at House/St. Vincent's. I would go back there in a heartbeat.
Best wishes as your surgery date approaches!
Catherine (JerseyGirl 2)
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Thanks, everyone, for the warm welcomes and thoughtful replies.
Yes, I'm in the L.A. area. In fact, I was born at St Vincent! And when I saw the docs at House last week, they told me that the floor they now use for surgery used to be the labor and delivery floor. When I told my mom that, she really got a kick out of it. I've gone ABSOLUTELY full circle!
Because of other health issues I've been disabled since 2003. In 2006, after many years of living in other states, I returned home to California and now have yet another reason to be glad I did, as House seems to be recognized as THE best place for AN treatment. Funny how things work out sometimes.
One thing I'm wondering about is this: I was told the other day that I have to come in for a pre-op physical and lab work with Dr Stefan, whom I have yet to meet. What can I expect at that visit? I'm asking because the TWENTY-TWO PAGE health questionnaire he sent me covers every conceivable body part! Is it just like heart/lungs/BP plus lab work, or really an actual physical?
They're concerned that because of my other health issues (including severe asthma, difficult to control hypertension, tachycardia, and more) I may not be cleared for surgery. Um...then what? I'm BARELY functioning right now because of the dizziness.
Thanks again for the warm welcome.
Grace
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Hi Grace
I can tell you a little about your pre-op orientation. I had surgery at House a little over a year ago. You spend a full day there. Meeting first (usually) with your head surgeon and the neuro-surgeon. Then you have lab work done at St Vincents. Finally, a physical with Dr Stefan. It's pretty thorough. They want to make sure that you are in condition to withstand up to 8 hours of surgery and that you have nothing viral that would put your system at risk.
I also wanted you to know that there are several of us former House alum who live here in LA that get together with pre-surgery ANers to give them support and answer questions they may not be finding elsewhere. If you're interested in meeting with us -- feel free to PM me. In the meantime, best wishes.
David
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Hi Grace:
Welcome to the forum. I had surgery a little over 3 weeks ago at House. My team was Dr. J. House, Dr. Swartz and Dr. Stephan. Like Jerseygirl2 said you are in excellent hands at House. I also traveled to LA from the east coast. I am from Maryland and the trip across country was well worth it.
As David said Dr. Stephan iis through and wants to ensure you can sustain the surgery. He is an excellent internal medicine doctor. Everyone loves him. You may want to meet with David and the House aluni group before surgery. My husband and I met with David, Nancy and Lanie and they are a great group of folks. I really enjoyed meeting with them and they shared so much. They are kind enough to share their time and experience.
Just a few things that you may want to pick-up for after surgery that was a help to me; refresh tears or other eye drops, stool softener, and lip balm. ALso drink plenty of water afterwards, you may be dehydrated.
ALso put your surgery date on the AN calender. Wishing you well.
Sonja
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HI Gace and welcome.
I'm sorry to hear you have an acoustic neuroma, but you've found a great place to come for information and comfort.
Regarding your balance issues, generally speaking, the more problems you have before surgery, the fewer you have afterwards because the balance nerve in your other ear has already started to compensate. It is better to remove the damage nerve instead of it continuing to send wrong messages to your brain. As for the aftermath of surgery, although everyone's outcome is different and there is no way to be completely certain what your outcome will be many of us have gotten through surgery relatively unschathed I am SSD but had BAHA surgery in January and am scheduled to start using the processor April 3. I have high hopes that it will be a huge improvement. While my balance issues have never been really terrible, I did use a can for a few weeks after surgery. I still have some minor balance issues but they don't affect me all that much.
If you haven't done so already, and your surgeons will be using the translabyrinthine approach, I would ask about having BAHA implanted at the same time as your AN surgery. This approach sacrifices your hearing but offers the best chance for sparing the facial nerve from possible damage -- I know others (jerseygirl2 for example) have had that done at House. I hope your other medical problems don't prevent AN your surgery. Please feel free to ask any questions you need to or just vent, we are here to support you however we can.
Best wishes,
Wendy
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i think Wendy meant "cane" not "can" - but it did give me a chuckle ;D
K
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Hi DLM,
I am another House patient, having had retrosigmoid almost 3 years ago. You will be in great hands at House, as the physicians are very thorough. And I agree with you that you are fortunate to be back in the LA area! We flew to LA from another LA, which is Louisiana! :D
As you've already read, & in answer to one of your questions, Dr. Stefan's important role is to make sure that you can withstand the surgery well, so that is why you had the questionnaire and the upcoming physical. You will meet with your other physicians, including your neurosurgeon, and I am sure that you will find them all to be very personable and caring. Dr. Friedman and Dr. Schwartz were my two main surgeons (can't say enough good about them!), and I met Dr. Brackman when Dr. Friedman brought him to my room to meet me, and he was just delightful, as well.
Balance issues, as you've heard from several people, can be predicted, but are very individualized, at the same time. My first time to walk after the surgery was surreal, but I quickly made progress with the wonderful p.t.'s help (Lovely "Pinky"!). Maneuvering stairs was also part of the learning therapy. You will probably be given some easy exercises to do on your own that will help with mobility.
Regarding the type of surgery you will have, I would like to note that when I arrived at House, my physicians, my husband, and I discussed the pros and cons of two methods of doing my surgery; the surgeons were not "tied" to one method. Because hearing preservation was high on the charts for me, together we decided on the retrosigmoid method. And they did preserve most of my pre-op hearing, which is good for low tones, not for high pitched ones.
Know that you are under the care of some of the very best in the AN business!
Wishing the best to you, DLM! Let us hear from you again!
Kathy
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The outpouring of helpful info and support is just amazing...and so very, very welcomed. :)
The more I think about it, the more worried I become that they're not going to clear me for surgery. As noted in an earlier post, I have several other, serious problems, any ONE of which could disqualify me. And now all I can think about is, if they won't clear me for surgery, what am I supposed to do? ??? I'm already just barely functioning due to the dizziness, which has gotten worse and worse over the past 2-3 months. Even a month ago was "good" compared to now! (And it sucked.) So if they don't clear me, what on earth will I do? I'm only upright now for very brief periods of time; mostly, I'm lying on the couch doing nothing. (Reading exacerbates the dizziness, as does looking at a computer screen or TV.)
It's a little hard to accept that after 5+ years of dizziness (and its accompanying broken bones!) of unknown origin, I finally have a diagnosis but might not be able to have the one treatment that will get rid of it. Obviously, I don't want the docs to do anything they feel would [unduly] threaten my health/life, but on the other hand...I don't want to think about NOT being treated. :o
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I would suppose that they would recommend the radiation treatment via Gamma Knife, which is what I think House has there. You might also consider talking with Dr. Chang at Stanford, who does CyberKnife. This will kill the offending tumor, not remove it. About the balance issues I have no answer for that, exactly. You might be able to withstand a brief surgery where they would cut the balance nerve, but you'd have to ask your doctors about that one. Try not to stress about this. What will be will be and the doctors always will think of something to help you. I hope! You know, where there is a will there's a way. Plan A doesn't work, there's always Plan B. That kind of thing. ;) And there is vestibular therapy, too. That may be of great help to you.
Your story sounds a lot like me, except I didn't have the extreme balance issues. It took a year to get the correct diagnosis, tho. So I sympathize with you greatly. I'm sorry you are having such a tough time.
Sue in Vancouver, USA
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Dear DLM,
O.K. Here are the facts: You are due to find something out in the next couple of weeks...you don't know what the doctors will or won't do. Can't read or watch t.v.....lying on the couch......soooooooo.....here is your answer: Music and books on tape!!!!! Music, music, music, & books on tape of any kind that will engage your mind. You know what? Another fact (sorry!) :-* is that all of the stressing and worrying in the world won't change what your doctors will or won't decide to do. So be kind to yourself....distract your mind with music, books on tape, conversations, phone calls, whatever it takes to engage your mind in any other way than worrying. Is this easy to do? No, not really. Will it work? Yes, really, it will, for those periods of time in which your mind becomes engaged in something other than AN will be a relief & friendly time to you/your mind. I'm not saying to ignore your problems, just to give yourself some small vacations from them mentally.
Keep in mind, too, that your House physicians are top of the line, and have faith that what they say needs to be done (or not done) is correct; their determination of how your case should be handled will be done not just on a professional level, but in a caring and compassionate way.
You have many people following your case and praying for you, so do take some time to let us know how you are doing (inbetween your "mental vacations", of course!)
God bless,
Kathy
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Kathy, I see what you're saying, but here's a little more insight into my situation: I've had SO MANY operations I can't even remember them all (without really thinking about it). Just in the past five years I've had...let me count...seven, I think. And that doesn't even touch on prior to that. Dating back to when I was 21 and nearly died from gyn problems, I've had illness after illness, surgery after surgery, to a point that I really didn't think I could handle it if ANOTHER one became necessary...and here we are. All of the prior operations were necessary, including several that were emergencies. Every time I've had surgery it's taken more of a toll on me; recuperation has been longer and more difficult each time; depression (which is a lifelong problem anyway) becomes much worse in the post-op period as I struggle to bounce back; I've also become prone to infections. So let's just say I don't feel terribly upbeat right now! The reality for me is that while I dread going through yet another operation...especially brain surgery!...it's even scarier to think of NOT having it, because I certainly can't live like this. Also, Dr Brackmann stated quite emphatically that I am not a good candidate for gamma knife. So I can't help but wonder "what if?"
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I was wondering why Dr. Brackmann said that you are not a candidate for GK/CK. Based on the size that you mentioned, it seems that you are well within the acceptable range for radiosurgery. Unless there is a major issue like brainstem compression (again, probably unlikely with your size). There are many doctors who are very much anti-radiation. Before you make a decision you may want to seek a second consult on this, perhaps with Dr. Chang at Stanford.
Marianna
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One of the classic (old school) criteria for radiation treatment was always "not a good candidate for surgery," so it does make you wonder why radiation is being ruled out. It may be because balance issues are not addressed by radiation treatment, and that is clearly a dominant symptom for DLM4me.
My concern here is that every case of recovering balance I have read about, after surgery or otherwise, has involved physical therapy and movement. I think the mobility issue is really at the top of the list; my gut says DLM4me, you have to get moving, one way or another. Canes, crutches, a walker, something. I think it is quite difficult to overcome a balance issue without moving around on a regular basis. Surgery can cut the bad balance nerve, making it easier for your brain to adjust, but you still have to go through some physical therapy and activity to get back in business.
I hope the pre-op consultation goes well, and that you get a good plan in place. If you are not cleared for surgery, there are alternatives. It does not sound like it is going to be smooth sailing, but there will be a way forward. We will be here every day to encourage you along that path.
Steve
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Dear Grace,
Wow, you do have so many issues. I like your name GRACE.
God will give you the grace to get through this. And the power of prayer is amazing- we all pray for each other-we all think it does make a difference -
Evidence proved us right with a fellow AN friend who's husband had lung cancer which was totally gone after the surgery (OK they took 2 of his 3 lobes out, but there was not a trace of it anywhere else. That is another story- let's focus on YOU).
I agree with the CD/music/books on tape/meditation. Calms the mind......
Trust in God and trust in the good surgeons you have. We are here for you.
Maureen
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I was wondering why Dr. Brackmann said that you are not a candidate for GK/CK. Based on the size that you mentioned, it seems that you are well within the acceptable range for radiosurgery. Unless there is a major issue like brainstem compression (again, probably unlikely with your size). There are many doctors who are very much anti-radiation. Before you make a decision you may want to seek a second consult on this, perhaps with Dr. Chang at Stanford.
Marianna
I totally agree with Marianna. Doctors, like everyone else, can have biases and sometimes those biases steer them away from treatments that they don't personally perform. Just because they don't do a certain procedure though, doesn't mean it isn't right for you.
You need to educate yourself and look into all possible treatment options. In the end you may or may not choose surgery, but at least you will have made an educated decision and done your research.
Dr. Chang would be an excellent choice for a second consult.
Jan
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I agree with so much that has already been said - especially with STEVE and the comment that in some form or fashion, you have to GET MOVING! It is easy to talk yourself into how bad it is but if you don't take charge of you to make your life better, who will? I have had more surgeries than I can count the last few years too - they may not have been as big & bad as yours, but have certainly taken a toll, none the less. I think that anyone that knows me would tell you that I haven't had all "sunshines & rainbows" but I CHOOSE to have a good attitude - never say die - this IS NOT going to get the best of me!! ;D You can do it - we are here to help & cheer you on! Try to think positive about having the surgery instead of what could happen to keep you from getting it!
K
PS -MOE loved your comment too!
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Hi again, DLM,
I am here to bug you again! ;)
I agree with Steve, Maureen,Kaybo, etc. Although facing AN can be very difficult at times, and though some have larger crosses to bear in life than others, we all have to choose how we handle things! Be proactive in finding ways to alleviate your mind from your AN worries, at least intermittently. Rely on those music cds, books on tape or cd, call some people to while away the time, etc. And keep in mind that you have so many people cheering you on; imagine us in the background all rooting for you!
May God bless you in many ways,
Kathy
P.S. Believe it or not, many of us become grateful that we had an AN & not something worse!
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Welcome, your story sounds oh too familiar. We are here for you.
Knowledge is power... empower yourself. Research and ask tons of questions.
Michelle ;D