ANA Discussion Forum
General Category => Inquiries => Topic started by: inmaine724 on June 16, 2010, 07:01:30 am
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I was just told that I have an AN as well. I had lost quite a bit of my hearing in my left ear back in December, and since I had had an MRI done the previous Feb, they took a look at that and said that yes, I did have an AN. So now I have to go in to have another MRI done to determine size, how much it may have grown and what our course of action should be. The problem I have is that everything I look up shows that it's benign and slow growing and is generally curable.
In the last 3 years I have had 3 surgeries at Lahey Clinic to fuse my spine in my neck. I am a healthy 39 year old woman, very active, thin. Those were scary to me, but I got through it just fine. I am concerned that I am not fully appreciating how serious this AN could be. I am not looking for someone to lay it out in a way that can scare me! However, I would appreciate someone explaining to me what this is exactly, and if it is indeed something to be concerned about.
Glad I found this group! Thanks for any insight...
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Mainer-
Welcome to the forum and sorry to hear you have an AN, but just so you know everyone's journey is different and they also have differring symptoms. First step is to join the ANA and have them send you their literature as it is very informative and then the next step is to determine the size of the AN and then what the treatment course should be. Watch and wait, surgery (many approaches, trans lab., sub occipital etc) , or stereostatic radiation (multiple methods, gamma knife, cyber knife and fractionated radiation). Choosing the treatment can be the hardest part because neurosurgeons want to do surgery, the specialists in radiation would like you to use their method (if the AN is small enough). Rarely is the decision made for you. What symptoms are you having? Just the loss of hearing?
Try not to worry too much and please do not hesitate to ask any questions or express your concerns. This forum is a wealth of information and we all know just what you are going through.
Take care,
Liz
PS Also make sure you if you choose treatment that you find a surgeon or team of surgeons who are experts with AN surgery because this is a very specialized surgery and experience is everything...
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Hi there .....
May I presume you live in Maine? Welcome to this forum of caring, supportive friends!
First of all, I hope none of us "scare" you ..... having the diagnosis of an AN is scary enough, without us adding to it. :-*
Secondly, I hope you will send for the free ANAUSA materials (see http://anausa.org/sc/apps/forms/forms.cgi). They are extremely informative and helpful as you being this walk in the world of having an acoustic neuroma. Basically you have three possible options (depending on the size of your tumor, the location, and your symptoms): wait and watch, surgical removal, radiation treatments to stop the growth.
Tell us a little bit more about the size and location (is it closer to the brain stem or the cochlea?) of your tumor and what your symptoms are.
You mentioned having to have another MRI ..... was your first one done with contrast? If not, be sure the order is written with contrast for this one. Also, remember that readings can be different from one radiologist to another or different MRI facilities. There is a margin of 1 to 2mm error even if both MRIs are read by the same person.
ANs are benign and usually slow growing so you almost always have plenty of time to research your options and choose the most experienced medical professionals you can find for evaluation and treatment. Occasionally some of us have had rapidly growing ones, but it is not the usual path.
Let us know how you are doing and there are many on this forum who will do their best to answer any and all questions.
Again, welcome.
Clarice
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I do have other symptoms, but until the doctor pointed this out, I had no idea they were related to something like this. I have a twitching (spasm like) close to my lip on my left side. I also have a lot of pain behind my eye and behind my ear when I move my head. The pain goes right through my ear, kind of like pulling. They informed me that it would be a result of where the tumor is. But so far, I really don't know what that means.
I don't know size or location just yet. The first MRI was not for this purpose, so that area was not zoomed in on or highlighted with contrast. And it was 16 months ago now, so they are expecting to see some change in it at this point.
The only thing scaring me is that I feel like I should be concerned more than I am. That maybe I'm not understanding how bad this could be potentially.
Thank you for all your kind words! And yes, I'm from Maine!
...Danielle
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Danielle,
Please just make sure that you have your next MRI with contrast so the tumor lights up and let us know what the dimensions are. I wasn't overly worried at first, but then once I was facing surgery I began to get scared, but like I said earlier everyone's journey is different so its hard to know how each individual felt when they were diagnosed. Keep up the positive attitude and keep us posted.
Take care,
Liz
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Hi Danielle,
Welcome to the forum :) Lots of good advice/humor and just venting going on here.
My AN was med-large and complicated, which is NOT the norm, so don't let my sig scare you. I am fine! Just want people to know what I had and where, for info.
Let us know what your new MRI shows, and I think it is great that you are not freaking out. It is treatable, slow growing and benign. And you know it's there, so it can be treated.
Chat later!
Maureen
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Hi Danielle,
I just wanted to chime in and say Hi and Welcome.Glad you found this site becouse it will really help get you through knowing all of have had the same issues and it is a very "tough' experience.
I live in N.H. and had my surgery at Dartmouth Hitchcok Medical Center w/ nuero surgeon Dr.Erkman and olotariangoologist(ent)
Dr.Saunders and a team that specializes in watching and monitoring nerve response.
I did went in w/ the same amount of hearing i came out w/...not alot in right ear but didn't lose it all.
Cindy
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Mainer -
get the free info from the ANA. It will explain a lot.
Good luck on your AN journey!
Jan
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Hi, and welcome, Danielle ~
I'm sorry you've been diagnosed with an acoustic neuroma but pleased that you took the initiative to search for answers on the internet, found the ANA website, then took the time and made the effort to register, read and post here. That kind of pro-active attitude will serve you well.
Your concerns are typical and valid. Although you don't yet have a lot of details, you've been correctly informed that the AN (tumor) is benign (non-malignant) and can be addressed. Depending on the exact size and location of the AN, you'll have three to four possible options: surgery, radiation, surgery and radiation (as I had) or observation, known around here as 'watch-and-wait'. The last option - 'watch-and-wait' - comes into play if the AN is very small and your symptoms are few and/or infrequent. This approach consists of annual (or semi-annual) MRI scans to observe the tumor to see if it shows signs of growth. Some do not. If so, you do nothing. However, should the MRI scans indicate tumor growth, you'll have to decide on a treatment at that point. Radiation is a viable option for tumors under 3 cm and not pressing the brain stem. Surgery is always an option and, as it was in my case, the only one available due to the (large) size of my AN. However, some doctors will, as mine did, recommend a partial resection of the tumor to deprive it of it's blood supply and, in effect, 'hollow it out'. This is usually called 'de-bulking'. In my case, it was followed (90 days later) with FSR (fractionated stereotactic radiosurgery) which is easier on surrounding brain tissue and, again, in my case, quite effective with minimal-to-no real complications of any kind. Today, four years later, I'm doing great and back to my normal routine. I can assure you that many other AN patients have similar experiences.
In summation, you have a relatively rare condition (1 out of every 100,000 people a year are diagnosed with an acoustic neuroma, technically referred to by doctors as a vestibular schwannoma ) that can be addressed by medical professionals. As my neurosurgeon explained it: the tumor isn't really all that threatening, it's the location (inside the cranial cavity) that makes it problematic. If surgery is indicated (or preferred), finding a doctor that has extensive experience in AN removals is critical. If irradiation is chosen to treat the tumor, the radiation oncologist also should have experience treating acoustic neuromas. Again, to quote my neurosurgeon, "when I'm doing AN surgery, the OR is no place for amateurs". He was explaining why he would only have a hand-selected team in his OR for AN surgeries, no Residents or Interns, except to observe.
Although an acoustic neuroma diagnosis is not, in itself, something to be frightened about, it is something you need to take seriously. As others have mentioned in their posts, AN patients seem to have a wide variety of experiences with surgery and/or radiation. The majority do well but there are always some minor re-adjustments to make, afterward. Frankly, like your neck surgery (my wife had similar surgery in 2002, so I understand the situation) this is an extensive and somewhat complicated surgery that runs around 5 - 10 hours, depending on the patient's AN size and location. Thankfully, the mortality rate for AN surgery is infinitesimal but there can be ramifications from radiation or surgery, some of which you'll undoubtedly read in these forums. It's prudent to be aware of this but it would be counter-productive to dwell on the negative and allow the 'what-if's' to dominate your thinking or affect your attitude as you prepare to deal with your AN.
I trust that you'll remain positive and continue your research as you prepare to continue your 'AN journey'. I hope these forums can serve as a resource for you. Although we're not doctors, our members have much practical 'real-world' experience that they're eager to share with you. Just ask.
Jim
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Thanks for all the information you guys. I really am so glad that I found this site. My MRI is schedule for Sat the 26th, so I will update then for sure. Oddly, they have to do my cervical spine MRI the same day because of nerve issues I'm having in my arm again. I would love to not have an appt scheduled one week!
Thanks again...Danielle
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As you can see, Danielle, there are a lot of great people on here with TONS of info about everything AN! I can't add really a lot except to say once you get more specific information, then that may lead to what kind of procedure you might choose. For a lot of us, what the worse part was about this whole process was figuring out what to do, where to do it, when to do it....I was like you in one regard, when I found out about my AN, I really wasn't too worried about what it could mean, at least until I started diving deeper into it. There is such a thing as information overload and that too can drive ya nuts. In any event, please do let us all know what happens with your MRI...in the meantime, if you are having feelings of anxiety or anything of the sort, you can certainly vent on here, or look up the WTT (willing to talk) list and you can call someone directly and talk to them. Good luck and keep your spirits up!
Jay
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Hi Danielle,
Like the others, I'm sorry you have an AN, but so glad that you found us.
This forum is not only here for the ANer, it is here for all that need it. As you can tell by my signature, my wife had the AN.
I hope that as you learn, and understand more about having and dealing with an AN, that you realize knowledge is power.
Please don't hesitate to ask anything on your mind. There are no stupid questions.
Welcome to the forum,
Rich
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Until you have more specifics about the size and location of your AN, there's not a real reason to make yourself sick with worry. ANs are treatable and are very, very rarely considered an urgent, life-threatening situation. Once you have more information, you can start to think about what the next steps might be - and that might just be do nothing for now but continue to monitor.
If you're willing to drive to Boston, there are several excellent centers with A LOT of experience treating this fairly rare diagnosis. I (and many others here) see Dr. Michael McKenna, a neuro-otologist, at Mass Eye and Ear Infirmary. He has quite literally hundreds of patients just in active "watch-and-wait" mode, plus the countless others who have completed treatment (surgical or radiation).
To me, the key to managing an AN diagnosis is to find a doctor who is very experienced. Most will not be. (I am the only patient my primary care doc has ever had with an actual AN.) Whether that means trekking to Boston or not, finding a specialist who has that experience is important for getting a treatment plan that works for you in your particular situation.
Good luck! Keep us posted!
Katie
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Hi and Welcome!
I just wanted to reiterate what Katie said about the importance of consulting with surgeons who have a LOT of experience with treating acoustic neuromas. I met with one surgeon during the early days of my diagnosis (he'll remain nameless) who enthusiastically told my hubby and I how much he looked forward to doing a surgery like this because it was such a challenge and he got so few opportunities! We ran out the door! ;D ;D
I've seen many people here who've been treated and Mass Eye and Ear, and I've heard only very positive things about that facility and about Dr McKenna in particular. Even though it is a pain to have to travel, it's well worth it. (I travel about 2 hours each way for my surgeons - worth every second of time.)
Debbi
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Thanks all. I travel to Lahey in Burlington, Mass every time I have surgery on my spine, and for all my follow ups, so I have no problem traveling for care. In fact, as much as I absolutely love Maine and where I am from, I would never stay here for something serious. Not that the docs here aren't wonderful, they just don't see the quantity of serious issues that they see in Boston.
MRI is tomorrow. (Cervical AND the IAC/Brain) We should know more when we get that back. I'll update when I hear anything!!
Thanks again!
...Danielle
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Danielle -
good luck tomorrow in the tube of gloom (what we Forumites lovingly call the MRI machine).
Jan
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Ha Jan!!
I know! I have MRIs done every 6 months for my spine/neck disease (in fact 4 in the past year now) and each time is like the first! I hate it!
Xanax here I come! :-)
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Don't think I'd like a MRI every 6 months, but over the past couple of years I've actually come to embrace the solitude - and yes, even the clanging - of the MRI machine. It's weird, but I honestly find it peaceful.
This past year I even opened my eyes while I was in the tube - something that I've never been able to do before.
If the Xanax works for you, bring it on ;D
Jan
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Done with the MRI! Ok, now begins my amateur radiological read of the images! Does anyone know a good site to see pictures of different size AN's? I'm sure I'll hear from the doctor on Monday, but would love to see if I can't get a look at it now.
Thank goodness it's done!
Thanks all!
...Danielle
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There are several MRI pictures posted on this Forum; you'll find them if you search.
Here is Pooter's http://anausa.org/forum/index.php?topic=9619.0
Usually an AN will show up as a bright white spot on the MRI due to the gadolinium.
Jan
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How do I upload the MRI image here? I can't seem to figure it out. (and yes, I understand no one here is a doctor! I just want to share! :-)
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you can't upload images here... go to photobucket or somewere and upload..
and when you post a message here.. you can reference the image there.....