ANA Discussion Forum
General Category => AN Issues => Topic started by: MAlegant on July 12, 2008, 10:09:19 am
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Hi all,
I have been recently diagnosed with a 3cm AN on the cerebellum pontine angle. Have had intermittent facial pain/numbness for quite some time but had really ignored it. I've had no discernible hearing loss. I am 48, in good health, a runner and a wife and mom. I am also a musician (a singer) and work as an academic dean at a conservatory. This would have continued to be undiagnosed if not for my excellent primary care physician who suggested an MRI after I explained my symptoms. Right now we are seeking the right surgeon, one who will try mightily to spare my facial nerve and my hearing, though I know there are no guarantees. I live near Cleveland, so the Cleveland Clinic is my best bet and that is where I assume I'll have my surgery. In the end, coming through this in almost any condition is better than the alternative but I fear my life is about to change in a dramatic way. It's amazing how close we all are to the edge, we just don't know it until something like this happens to us or to a loved one. I appreciate being able to post on this forum and reading the posts has alternately terrified and emboldened me. I'll keep you all posted.
Marci
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Hi Marci,
Glad you figured out how to start your own thread. Forum navigation is an important skill. :)
As others will tell you, taking a little time to find the right surgeon is well worth the effort. You may lose the hearing on the AN side, which is always harder for the musically inclined, but not an insurmountable problem. There is a good chance that will be the only significant issue. In some cases, an effort to spare the facial nerve means leaving a little bit behind, and treating it later with radiation if needed. That has worked out well for several people on this forum.
I think you are right, your life is about to change in a significant way. Most of the time, the "new normal" turns out to be quite workable and acceptable, so there is every reason to be optimistic instead of terrified. You can't really determine the outcome beforehand; you just have to go through all the steps, and see where you end up afterwards.
Best wishes,
Steve
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Hi Marci-
Welcome to our little family - the one that no one really wants to have been a part of... You are, however, in great company here - we have all gone through or are going through this same process.
I've seen lots of great things about the Cleveland Clinic, so it seems that you are going to be in good hands. You may also want to send your MRI CD (copy) to House Ear Clinic in LA, as they will do a free telephone consult for you. That was the first opinion I got, and although I chose to have surgery close to home in NYC, I would have been in equally excellent hands at HEI. Interestingly, they were the first of three surgical teams to suggest that translab was really the best approach for me given size/location of the tumor. Along with that approach, of course, comes SSD which scared the pants off me. However, I will say that SSD is not as bad as I feared, at least not so far. I hear everything extremely well through my left ear, and that includes music. My husband would tell you that I actually hear more things now than I did pre-surgery (even though my AN side hearing was not that bad). I believe my non-AN ear is working more effeciiently now and hearing more tones and sounds. Of course, I may be completely nuts on this - but that's what I believe! ;D
Post any questions, fears, concerns you have here - you'll always get lots of great response. I can honestly say that I would not have gotten through this nearly as well without all the caring, knowledgable and supportive people on this form!
Wishing you some calm moments,
Debbi
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Marci--
Glad you started your own thread!
In response to your question on the other one: I'm doing quite well. My recent surgery was for a smaller regrowth of a much larger AN removed 20 years ago, and that first surgery was much tougher to bounce back from for a number of reasons, one of which I'm convinced is how utterly unprepared I was for what was coming! You are very wise to be gathering info here as you research your options out there...
I think the fact that you are a runner will stand you in good stead (stamina and a well-exercised vestibular system should come in very handy post-surgery...).
Like you, my AN was found (in '89) by my family doctor. We were living in Podunk, NM; ANs were pretty much off the medical radar at the time; and yet I lucked out and checked out my weird but not terribly bothersome symptoms with the one doctor in probably a 3 state radius who came up with the correct diagnosis on his first try!
About how reading posts here can frighten as well as reassure: I absolutely identify with that. Sometimes, in the weeks after my (re)diagnosis this February, I found myself latching onto threads posted by folks who had had problematic outcomes, and had to remind myself (as is so frequently pointed out by wiser, calmer heads here) that ANs are slow growing, benign, and if you get yourself a surgeon with lots of AN experience, the chances of your coming through treatment for one just fine is excellent!
Carrie
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I had my surgery at University Hospitals Cleveland with Dr Megerina. I highly recommend him, at the very least for a consult. Sent you a private message........
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Hi, Marcie:
Let me extend yet another welcome to our site and forums. :)
My take on your AN situation is that your fears are completely natural. It would be condescending to assure you that you have nothing to be concerned about and that your fears are groundless. They aren't. As you have observed and others agree (as do I), your life will change somewhat in the months ahead. No one likes that kind of involuntary change, but we are surprisingly adaptable creatures and, although no one can predict the future, I'm confident that you'll do just fine. You're relatively young, admittedly in good health and active as well as putting yourself in good hands with the Cleveland Clinic.
The good news is that an Acoustic Neuroma is almost never malignant and can be effectively treated with surgery, radiation or sometimes, both, as mine was. I'm much older than you, probably not as vigorous and I underwent surgery + radiation and came through very well. I was able to regain normalcy in a fairly short period of time. That says nothing about what you'll experience, of course, as every case/patient is unique and yes, some AN patients do have complications and problems following surgery/treatment but many do not or else they experience transitory problems that are resolved within weeks to a few months.
I like to use the metaphor that having an Acoustic Neuroma is a 'minefield' because I see it as analogous. Unfortunately, the AN diagnosis is not optional and we all have to deal with it, physically and emotionally. From the realistic character of your post and the optimistic attitude I perceived trying to surface within it, I think you'll navigate this situation quite well, Marci. We're here to help you do that. Just ask. :)
I wish you all the best as you begin this journey and I'll look forward to seeing more posts from you, soon.
Jim
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Hi all,
So here's a question for you: what is the best way to deal with spouse's/partners who are having a really hard time with this? My poor husband is a wreck and though I'm trying to "pick him up", it's not working. He's depressed and anxious and though I know he'll be a rock when he needs to, right now he's in bad shape. Any advice?
Marci
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Hi Marci-
Would it help him to read some of the threads on this forum? Or, to read other information about Acoustic Neuromas? My husband read everything he could get his hands on the first few weeks. He also went to all my doctor's appointments, and talked to some of the WTT folks when I had calls scheduled.
I personally think that it is almost easier to have the AN than to be the person who loves the ANer. Your husband probably feels completely helpless, and that's just not easy for anyone.
Be patient with each other - it's a hard time for both of you.
Debbi
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Hi all,
We met with Dr. Barnett at the Cleveland Clinic today and had to rule out GK because of the type of tumor I have. We will meet with Dr. Selman at UH shortly and it will be a difficult decision, Barnett is a top surgeon, so is Selman, how does one make such a life altering decision? Help....
Marci
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Hi Marci,
As an ANer whose spouse has been certifiable the past couple of weeks (he was pretty solid leading up to and for the first 2 weeks after surgery, but as soon as it became clear I was recovering OK, he kind of came apart at the seams-- from pent-up stress, I guess...), and who literally bounced off walls 20 years ago, I fully empathize with your concern. I agree with Debbi that he may calm down if he's a little more informed; both an overview of AN as well as getting to know some individual stories (which you can pick and choose for best effect!) may help tremendously.
I was pretty much in the dark myself the first time around, but even so I knew that what was most at risk, for me, was my facial function (due to the size of the tumor). But DH remained convinced (up to late March of this year, when, heaving a huge sigh, I FORCED him to sit down with the statistics) that I had had a 50/50 chance of dying during surgery! I never realized that's what he was so terrified of--it certainly explained a lot... ;)
Re the neurosurgeon doctor search: I got my recommendation from my original surgeon, then confirmed it by researching the doc's background (he had a website online with his full vitae and publications) as well as seeing what folks on this forum had to say about him.
I don't find anything about dr Barnett in past threads, but doing a search for Dr Selman turned up several threads you may want to check out. Here's the link:
http://anausa.org/forum/index.php?action=search2
Carrie
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Hi Carrie,
Thanks for yours. I tried the thread but it didn't lead anywhere. Once more? And I can't say enough about how much I appreciate everyone here.
Marci
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Hmm... Sorry about that--I thought I could link to the search for you, but apparently not.
Just enter "Dr Selman" in the "Search" box above, and you'll get the same results I did.
Carrie
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Hi Marci
Welcome to our special family,not only, because we all have acoustic neuromas but because there are so many special people here to help walk you through and support you through this whole ordeal. Your husband is also part of our family so we would also like to help him as well with whatever questions he may have. We can give our thoughts as patients but leave the technical questions to the dr's. What we can't answer the "Cyberknife patient support group.org" link has the best of the best Dr.'s that volunteer their time,energy,and expertice to help answer questions that are concerns to us. Please log on to ease your minds with answeres so you can move confidently through the AN journey with your next questions. You'll be surprised how many others have the same questions. You are not alone.
Best wishes and congrads for finding this site.
Claire
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Hi, Marci and welcome. Sorry you have to be here, but there are worse places and you'll find the members of this forum very helpful and very supportive.
I see you have a 3 cm acoustic neuroma which is at the upper limits of radiation, so I assume you are currently researching surgery.
I had surgery a year ago and I had a great outcome - my only lasting issue is SSD (single-sided deafness). I had a BAHA implant about 4 months ago and it's really helped with my SSD.
I encourage you to contact the ANA and request their literature on ANs - it's very helpful.
Jan
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Hi Marci -
Welcome to this forum. I think you will find this forum to be a fountain of information, compassion and understanding. Feel free to post any questions, fears or just vent when you need to. We are all here to help and support one another. I have to agree with Jan about BAHA or Transear, expecially since you are musically inclined. From what I understand (I'm having surrgery next Friday and plan to have the surgery and get the BAHA processor as soon as possible) it's not quite the same as natural hearing but helps a lot. I wish you the best of luck and hope your husband will soon get a handle on things. I know this is a scary experience for him as well as you.
Best wishes,
Wendy
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Marci:
On the issue you raised about spouse/family dealing with your AN diagnosis I would simply add that your attitude is crucial. My wife was very concerned (to put it mildly) when I received my diagnosis and surgery was indicated. However, I maintained a fairly serene attitude throughout the consultations, lab tests and so on and although she remained anxious, she handled it well and involved herself in making appointments, driving and accompanying me to the doctor visits and all the things necessary when dealing with an AN and deciding on a treatment. I doubt she ever completely shared my equanimity but her efficiency and moral support were invaluable.
The underlying point is that this is about you, not your husband or relatives. They have a right to feel some anxiety but not to make the situation worse by becoming more of an obstacle than a help. There is obviously no point in arguing about this with your husband but by setting an example of relative calmness and having some control over your emotions (not always possible, I know) you can set the 'tone' for the situation. I expect you're already doing this and that your husband's fears are abating and his attitude has stabilized by now as your surgery is scheduled and the reality of the situation is coming into focus. Prayers are already being said for you and of course you have the support of many unseen but very real friends on this forum. You'll be O.K. :)
Jim
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Marci -
Jim is right about your attitude. IMO also, it's crucial.
Try to stay upbeat and don't let others "bring you down".
I'm confident that everything will turn out fine for you. Count me among those who are praying for you and hoping for the best.
We're here to support you.
Jan
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With surgery on Tuesday, I have settled into a strange sort of calm. As a musician, I've perfected the art of "positive visualization", except instead of a good performance and wild applause, I "see" the surgeons going in and getting the tumor, or most of it, and then I imagine myself opening my eyes--both of them, so that I can hear the doctor say, "you did great, you're going to be fine". It may sound hokey, but it's gotten me through my share of stage fright. Of course, wild applause would be welcome as well.
My husband has also calmed down and has been terrific in the pre-surgery days. I can see in his eyes that he's worried about me, but I know he will be the rock I need as I try to recover. Interestingly, our 20 year-old son has been calmer than either of us. After his initial meltdown he has been amazing. I maintain that my son is my most important accomplishment. He is an exceptional young man. I am prouder of him than I can say.
I can feel your good thoughts and your prayers--keep them coming.
Marci
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Marci-
Perfect visualization is a wonderful and powerful tool. I am glad that you are able to do this. And, yes, there is a certain peacefullness that seems to descend as you get so close to surgery.
Prayers and good thoughts are with you and your family. You're going to be fine.
Debbi, visualizing your smooth recovery...
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Of course, wild applause would be welcome as well.
Then wild applause it shall be:
http://stevegerrard.home.comcast.net/applause2_x.wav
Steve
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Steve,
That's hilarious and it made me laugh. I shall play it repeatedly. Thanks for that.
Marci :D
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Marci
I'm jumping on this thread a bit late but I'm glad to see many of the issues you started with have been resolved. There are two things I want to share with you. The first is SSD. I've been SSD for nearly 24 years. It does present some challenges like making sure where to position yourself at a table and walking with people on your "good ear" side. But it is managable. The one caution though -- do everything you can to protect the hearing in your good ear -- including wearing ear plugs it you feel you are going to be in a loud environment.
The other issue is running. I too am a runner and have been since I was 10 (I'm old now ;)). Going back to running after surgery was probably the biggest shock I had. About a month after surgery, I tired to run. It felt like my brain was bouncing around in my head. You may experience the same thing. It does get better. Five months after surgery I ran a 5K and I'm now in training to do a Half Marathon in October.
Best wishes
David
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David,
Thanks. As a long-time runner (27 years or so) I know I will be chomping at the bit to get going. I will consider the first step I take after surgery to be the first step in my new training regimen. And I won't do too much until I get the doctor's ok. We're thinking about getting a treadmill at home. We have an elliptic machine but I don't think I'll be up for that. I appreciate the advice from a fellow-runner. As for SSD, if that happens I don't think I'll be able to sing anymore. That will cause me great sadness but I will deal with it.
Good luck with the half-marathon; I ran one of those about 9 years ago but I don't think I trained hard enough, it was not fun. But after, they served hot buttered pierogies! It was November in Cleveland after all.
Thanks again,
Marci
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As for SSD, if that happens I don't think I'll be able to sing anymore.
Jim Scott has pointed out here before that among others, Brian Wilson of the Beach Boys was born deaf in his right ear. You may still be able to sing!
Steve
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Well if Brian Wilson could do it, I can too.
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Marci
I agree with Steve and Jim. Brian Wilson was just one example. If I'm not mistaken, Cher may be SSD. There's a list I came across one day. Listening in stero goes away, but I wouldn't worry about the singing.
And being a Pittsburgh boy origianally, those hot-buttered pierogies sound great for the end of a Half. I used to run the Atlanta Half on Thanksgiving Day so I could eat as much as I wanted for dinner without the guilt. I wonder what kind of food they'll have at the end of the Long Beach Half -- tofu?
David
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I "see" the surgeons going in and getting the tumor, or most of it, and then I imagine myself opening my eyes--both of them, so that I can hear the doctor say, "you did great, you're going to be fine". It may sound hokey, but it's gotten me through my share of stage fright.
Marci -
this isn't hokey at all.
One of my docs and I had this ongoing routine after I made my decision to have surgery. Everytime he told me something that he could tell was frightening to me, he would follow it up by saying "You'll be fine". I got into the habit of answering him with "I'll be fine".
At some point "I'll be fine" became a mantra that I would repeat to myself and it got me through a lot of tough spots post op. It gave me confidence that everything would turn out okay.
The good news is, my doc was correct. I am fine. You will be too :)
Keep the faith,
Jan
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Hi all,
Went for my run this morning and saw two deer! It was a beautiful sight and I loved it. My dogs were extremely confused however, and nearly lost their minds. Be that as it may, I am enjoying my last couple of days of "pre-treatment" and look forward to just having it over and done with. On a brighter note, yesterday I went to have my driver's license renewed and I smiled the biggest, goofiest smile I could muster. Just in case I lose my smile. Just in case. It's the best looking driver's license picture I've ever had. :)
Marci
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Good for you, Marci! No matter what, you now have a kick-**** drivers license picture! And, hopefully, your smile will be as big and bright as ever come Tuesday night. (Okay, you may not feel much like smiling when you wake up from surgery, but you get the idea...)
Debbi, giving you my biggest half-smile!
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So today I went for my Mapping MRI and they shaved my hair in a few places and placed big green and white eyeballs in various places on my head, including right above my eyes. I'm looking pretty bizarre at this point. But probably a cake walk compared to what I'll look like tomorrow. Anyone else have this done pre-surgery?
I'm going to see if I can contact the mother ship now.
Marci
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Marci-
Very interesting. I didn't have this done prior, although I know that my surgeons do this with some other types of brain surgery. Do you know if the eyeballs are for nerve monitoring or placement of a head brace or something else?
Debbi
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Debbi,
They said it was to create a computer image of my brain to better guide the surgeons. I say "let 'em have all the navigational tools they want".
Marci (the four-eyed alien)
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Marci/Debbi:
I had a very similar experience the day before my surgery. The hair shaving and the placement of 'markers' (little circles drawn in felt-tip and quite artistic) on various places on my face & head. I asked the technicians what this was for and they said: "nerve monitoring electrodes". I assumed this was standard procedure for AN surgery patients. Apparently not. I looked pretty weird, too, but I stayed in the house so I wouldn't scare any neighborhood children. My wife and adult son were amused by my discomfort for awhile but eventually stopped laughing long enough to remember that I was having brain surgery the next day and they ignored the markers. Well, they pretended to, anyway. I just resigned myself to the series of minor humiliations I would be facing over the next few day (catheter, hospital swill food, etc) and told myself that it would be over by this time next week. It was and the whole thing is a distant memory, now, two years later.
Marci, I trust you'll have a similar experience. Meanwhile, enjoy your life...it will change a bit but probably not too drastically. My hopes and prayers go with you. :)
Jim
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Marci, Sounds like a new thing they've added since my surgery! I am a musician as well and singing with SSD is different. I didn't really notice it until I had the BAHA trial headband. That was when I realized I couldn't hear myself in my head as well without the BAHA. Not sure if that makes sense or not?! The BAHA has definitely helped though.
I just renewed my drivers license this year....the last one was taken a week before surgery. I photocopied it before turning it in....my last REAL smile.
Enjoy your last meal on this side of the surgery...I ate at 11:58 pm and was starving by 2 am....lol I didn't eat much at UH but my dh says they have pretty good food. Good luck and we'll see you soon..............
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I finally have a time...6am at the hospital with a 7:15am start time. Whatever that means....
Marci
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Wow surgery that quick? I'm Mindy nice to meet you and welcome aboard. You are in great company here. Why was Gamma ruled out? 3cm? Did you talk to anybody on the CK board? I never looked to see if you have spoken about this yet. I do wish you all the luck for tomorrow. You are in our thoughts and prayers...Keep us posted when you feel better!!!!
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Hi,
Gamma was ruled out for the moment. The tumor is just on the edge of being too big and there is some necrotic tissue in the middle so three opinions were to "debulk" the tumor first (to preserve the facial nerve and hearing) and to go back at it if there is any left with GK later on. So, surgery it is for the moment. Thanks for your best wishes. I appreciate it as I have appreciated all of the love and support I have found from this unexpected source.
Best,
Marci
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I just got diagnosed today - AN in my left ear - with a recommendation for surgery. One of the doctors mentioned was a Dr. Cliff Megerian at Univ Hosp in Clev. Someone wrote to me and told me he was your doctor. Could you tell me anything about him and your experience with him? Needless to say, I am still in shock and scared and wondering what this is all about. I never heard of it before. Anything you can share with me will be appreciated. Thanx, Zoe
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Hi Zoe,
Dr. Megerian at UH was amazing and so was the neurosurgeon, Nick Bambakidis. Usually the team is comprised of Selman and Megerian but Selman has his arm in a cast so we thought it best that he not operate. Zoe, hearing this news is like being sucker punched in the stomach-you just aren't prepared for it. Megerian and company provided world class care to me and also to someone who's screen name is pembo. Do a search for her and she'll fill you in. I just can't say enough about how they have taken care of me. Tomorrow will be one week since my surgery and I am starting to feel a bit more like myself. The odds are way in your favor with this type of tumor, you should meet with Megerian at UH and others at Cleveland Clinic as well. I made the rounds and had three opinions before I settled on a course of action. I'm sorry you've had to join this "club" but there many wonderful people here to help you get through. Let me know how your journey progresses and feel free to send me a personal message.
Best,
marci