ANA Discussion Forum
General Category => AN Issues => Topic started by: Clifton on August 07, 2007, 05:15:12 pm
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Hey,
My name is Clifton. I have just been informed this morning that i have an AN.
I woke up about 9 days ago with the sensation in my right ear like i was under water. I couldn't hear at all like i normally could. Frequencies were different from normal and i couldn't really understand talking.
After 2 days i went to a med clinic where they thought i might have some sinus congestion and she said that if it persisted to see an ENT.
So after another 2 days i was worried and set up my appt. He did some tests and said i've definitly lost alot of hearing and prescribed me some different meds *ie. steroids and famvir* thinking it may be a virus but also made sure to set up an appt for an MRI.
Well today was the day of the MRI and he broke the news to me...
I apologize if I am about to ask some stupid questions but im just in a little bit of shock at the moment.
The doctor told me that i have 3 options.
1.Observe
2.Surgery
3.Radiation.
He said that because of my age i shouldn't just sit back and watch it because it could continue growing, and he seemed to steer me into the "surgery" option more so than the radiation, again, because of my age probably.
The thing that bothered me the most was that he said i could potentially lose control over my facial expressions with the surgery option. Has this happened to anyone on here?
Im leaning more towards the surgery option, but the loss of my facial muscles scares me of course.
I am elated that i was able to locate this board so maybe some of you can help me shed some light on the situation. Im trying to be as optimistic as i can be, but its a little rough.
There are alot of questions that i want to ask but in order to not confuse myself i guess i'll just take them slowly.
Thank you so much for having me.'
God bless.
Clifton
San Antonio, Tx
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Hi, Clifton:
I'm sorry you've been diagnosed with an acoustic neuroma tumor but I'm glad that you found this site and forum. We're not doctors and can't offer medical advice but we can and do try to offer practical advice, based on sometimes hard-won experience.
You’ll need to find out exactly what the MRI report said and what was the measurement of your AN. If the tumor is tiny, ’watch-and-wait’ may be the most practical course to take – for now. These tumors can stay dormant for years or grow very, very slowly. They can also experience growth ‘spurts’. My neurosurgeon speculated that my large AN might have been there for 10 to 15 years before growing large enough to cause symptoms. This is not uncommon.
If the AN is small enough, non-invasive radiation treatment may be your best option. It isn't guaranteed not to have complications, but it's easier than surgery.
The surgery your doctor mentioned is another, common, approach to removing AN tumors. I had it, as have many others posting on this board. Surgery certainly does have implications for facial paralysis and other assorted problems, but so does radiation. Unfortunately, because the AN tumor usually originates on the 8th cranial (auditory) nerve, it can affect various otherr crucial nerves that control swallowing, blinking, facial expression, etc. This doesn't always occur and I didn't suffer these problems, even with a relatively large (4.5 cm) tumor that was surgically 'cut down' and then, radiated over a 5 week period. I'm fine, now, 14 months post-surgery. Of course, we're all individuals and no responsible physician can or will guarantee the outcome of any procedure.
Basically, having an acoustic neuroma tumor is a bit of a minefield. You do have options, of course, but there are always going to be residual problems and emotional issues to deal with, sooner or later. The good news is that it's a benign tumor (not cancerous) and is treatable. You'll get through this.
Please browse the website ands take advantage of the excellent information available here, along with the collective wisdom of the forums. You are not alone in this journey and we want to help you in any way we can so please, Clifton, stay connected and let us know how you're doing and what you're doing. We want to know because we care.
Jim
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Hi Clifton: Glad to meet you. I don't know how large your tumor is, but PLEASE, take a deep breath - you have some time no matter what. Look into the different sites here - many questions you probably have are answered here - and any you want to know we're all happy to help you with. I didn't know about this site until after my surgery - I am so glad you found us.
To answer 1 of your questions - I lost my faical function - & it has not been an easy road (to put it mildly) - but this is about you.
Yes, you are in shock. But you're right, take it slow - no need to make any 'quick' decisions.
Please let us know the size of your tumor. The surgeon says your at an age for surgery, so you're probably NOT in your 70's - 80's & in poor health. And if he/she told you you can observe, surgery or radiation, you DO HAVE TIME.
In the physician section you'll see people ask about docs all over the country; the radiation section deals with just that, etc., etc.
We're all here for you, believe that. So, take your time, ask away.
All the best, Nancy
ps: oh, & don't let any dr. rush you into ANYTHING.
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thank you so much for the patience.
Dr. Perry in San Antonio is who will be discussing the situation with me in more detail.
The ENT who showed me the MRI's said that my tumor is very very small...he said 2.5 mm in length or so, which is why he says that i haven't experienced any numbing of the face or dizzyness.
I am going this thursday to Dr. Perrys office to discuss different routes to take. The ENT said he does about 1 per month, similar cases to mine here in san antonio.
Anyone in the area have someone to recommend?
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Clifton: I'm not in the area, but be patient - the way it works is as people log on, they look thru the sites, & will find your subject. And, the good news : YOU'VE GOT A BABY AN ! Lucky you(believe it or not) - you CAN play the 'watch & wait' - In fact, look at the pre surg, or search the words watch & wait - you'll find quite a few folks doing just that!!
Again, so glad you found this site pre-op. Best wishes, Nancy
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Hi Clifton and welcome to the Forum.
I had a beautiful, long post for you...but everyone beat me to it! :D
So I'll just say Welcome and best wishes to you in your treatment of your "baby AN" and be sure to look at all your options.
Good luck and take care,
Sue in Vancouver USA
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I've been a member of quite a few message boards but none like this. I definitly appreciate the support.
I am visiting the Dr. Thursday to analyze the situation and decided what would be best for me.
Is it possible to regain control of your facial functions if you lose it post op?
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hey clifton,yours is in the millimeter stage,thats actually good.
this forum has some very wise people on it,very attached,you have found
a very good place.you will overcome this , it may seem hard to believe right now,but you will !
john from dallas..
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I too have a very small AN...2-3mm and have been advised to Wait and Watch. I am going for a second opinion next week at MD Anderson in Houston. I would advise you to seek at least a 2nd opinion too. I don't know of the treatment facilities in San Antonio, but I have been really impressed the people at MD Anderson so far. I will let you know what i find out next week. I fortunately have have had no change in my hearing (knock on wood), only some dizziness and headaches. We are lucky that our's are so small in that we do have time to research and make the right decision for us. The people in this forum have been so helpful to me and are such a caring group of people. Good Luck to you and keep me posted.
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Hi Clifton and welcome:
I am sorry you need to be here but glad you found us.
This is only my opinion Clifton but, I think you should watch your AN for a while to see if it grows. This would give you time to explore the options available and the possible complications for surgery and radiation. By your next MRI, you will be very versed in everthing AN and you can make an informed choice if it is growing.
Good luck to you Clifton. If you end up deciding on surgery, you owe it to yourself to select a surgeon that does 100 or more AN surgeries a year.
If you click on the ANA logo at the top, there is a link where you can request information on everything AN.
See you around the forum!! Kathy
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Hi Clifton;
Guess I didn't catch your age in the thread but considering your AN is that size, if this were my decision to make, I'd watch the thing a bit and repeat MRI in 6 months and no more than a year.
Oftentimes the real damage is accrued upon treatment.
Re, facial paralysis or weakness, that's always a possibility with any treatment type but the facial nerve is the most resilient of the 3 nerves generally involved with IAC tumors. Generally its a weakened nerve which appertains to normal in IT's time. Weakness doesn't always occur however.
NF-2er
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Hi Clifton- welcome to Club AN! ::) I have a 2.5 CM tumor so I did have to "deal with it" but I was told I had some time, like 6 months to a year... My first ENT set me up with his business partner who would have done a translab procedure to debulk the tumor and then I would go for gamma knife radiation to kill the rest of the bugger. The lastest procedures now debulk with surgery then radiate with gamma. My second opinion was with House in LA who said just surgery. With translabrynthian surgery the balance nerve is cut in order to preserver the facial nerve. So while people were going to save my facial expression, my hearing in the left ear was to be gone completely with no chance for a hearing device of any type. Third guy suggested a retro sigmoid surgery with 5-10% chance of hearing preservation. Fourth guy- who I went with suggested CK (cyber knife) as I had no balance issues. My hearing is still preserved and CK was really easy...When my husband asked Fourth guy (Dr. Chang, Stanford) why so many different plans just to treat my ear, Chang explained that surgeons who trained in the 1980's were trained in surgical techniques while guys in the 1990s were trained in both surgerical and radiation. And yeah- surgeons are the best salesmen out there! Each opinion I got was compelling- that's what both my husband and I found frustrating. I always wanted the "least evasive" procedure so it took extra time, effort to get what I wanted. My advise- do lots of research, and yes take your time. Please contact me via email or personal message if I can help you at all. Take care of yourself! Annie
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Hi Clifton: People can regain use of facial function if the facial nerve is stretched, not cut - but many times even with stretched it doesn't go back 100% - there are usually residual eye problems at the least. Those of us who's facial nerve was cut, well, we either go for further nerve surgery, or like me, in a few months I'll have reconstructive surgery - my face will look more'normal' but I still won't have movement on my right side.
Take your time deciding....
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Hello Clifton,
So sorry that you are joining us, but am glad you found this forum so early in your AN journey, as these are wonderful caring, and sharing people who have, been down the many roads this journey can take us. If I can impart any wisdom on your situation it is that "You do have time to do your research, before you have any procedure done"! Initially panic seems to be the first feeling we ALL share. You really must give yourself the necessary time to calm down and research your options and what is best for you! Your AN is very small, so you do have the luxury of taking the time for research. Don't allow anyone to push you into doing anything until you are comfortable with your choice, and that is only achieved by research and understanding what this journey is all about. Continue to post your progress, and good luck!!!
Jackie
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Is it possible to regain control of your facial functions if you lose it post op?
Definitely ! Most come 100% back 6 months or so ... but even after few years.. mine had zero movement after 1 year... and tomorrow is my 2nd year anniversary!! ... and I have lots of movement since then...
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UPDATE:
Well my friends, it appears as if there was a misunderstanding because i called to verify the size of the tumor and i am now being told that it is "2 cm long and 1 cm into the canal". not quite sure what that means if someone can help me understand a little better.
Most of you are right about the panic and rush rush being my immediate response but apparently this has been around for awhile, just unnoticed so i assume i can safely do more research to decide how to remove it. Im guessing since its much larger than originally comprehended i have drastically less time to decide.
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Clifton,
I’m sorry to welcome to our club, but I hope you find as much comfort with it as I did. I was diagnosed on 7/9/07 with a 4cm AN. You can read my thread http://anausa.org/forum/index.php?topic=3894.0 (http://anausa.org/forum/index.php?topic=3894.0) .
This website was amazing in the first few days of my diagnosis. I gathered so much information that it was honestly a bit overwhelming, but I was glad to have it and felt better to have it than not. One thing I learned…..DO YOUR HOMEWORK!!! There are too many surgeons out there that are not AN experts. AN is very specialized and the surgeon(s) must be experienced. You are lucky, your AN is very small, you have options. I do not, mine has to come out and quick. I must, as many on this forum, sacrifice the hearing in my right ear (AN side). About 3 months ago I started having facial issues. This may just be due to the fact that the tumor is aggravating the facial nerve and I may not have issues post-op. The surgeons won’t know until they actually get in there and see what the situation is.
If I can offer any advice, stay strong and don’t freak out. I was lucky, I have an amazing amount of support from my girlfriend, Sam and an amazing amount of support from friends and family. I have a meeting with Dr. Bartels http://www.tampabayhearing.com/PeopleBartels.aspx (http://www.tampabayhearing.com/PeopleBartels.aspx) and Dr. van Loveren http://www.societyns.org/society/bio.asp?MemberID=176 (http://www.societyns.org/society/bio.asp?MemberID=176) in Tampa, FL on the 15th of this month and a tentative surgery date on 9/6/07. I have not had surgery yet so I can only offer you pre-op advice. Do not feel stupid by asking “repetitive� questions. I did often and everyone was very supportive. Also, ask the doctors you meet questions…..A LOT of questions. Write them down and take them with you so you won’t forget. You will get on many tangents with doctors and you want to stay focused and keep your questions organized. Do not hesitate to ask me or any of the wonderful people on this forum many questions.
Best of luck!
Adrian
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Clifton,
Glad you called to verify the size, it's unlikely an AN at 2 mm would cause any symptoms, but you never know. And, I may get my butt kicked for this but do NOT let someone who only "does" 12 AN surgeries per year talk you into letting him perform one on you! That is just not enough. It is definitely worth travelling to a center of excellence to treat this sucker, whether you choose surgery or radiation as you are within the limits for a non-invasive procedure. Keep us posted. The folks here are GREAT! By the way--get a CD or copies of your MRI films and also the radiologists report and look up some of the terminology on an online medical dictionary. You can also get free educational meterials from the ANA--just click on the logo in the upper right hand corner of this page and find the link and fill out the forms.
About the 2cm long and 1 cm into the canal thing--ANs start on the nerve as it travels through the inner ear canal and sometimes they poke out into your "brain-pan." Boy are THOSE layman's terms! There are good images on the ANA site.
Be Well , Sail On and Don't Worry,
Capt Deb 8)