ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: jenna1 on November 27, 2008, 09:01:50 am
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wayne,
i was also recently told i hane an AN it is 2.8 cm and went to dr.post on 11/25.
are you going for any other opinions, dr port told me the same as he told you but stated i should have a97% chance of no face sagging. on the other hand he said there is only a 30% chance of hesring retention in that ear
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Hi,
I was just diagnosed a few days ago and I like everyone else is overwhelmed and don't know what do to. My tumor is small right now and I have no hearing loss but I have balance problems and occasional ringing in my ears.
I live in the NYC area and went to NY Presbyterian Hospital. I had consulation with Dr. Selesnick and Dr. Steig. If you look up Dr. Selesnick he has amazing credentials. But I'm not sure what to do....surgery now and risk hearing loss or wait till it grows. I will be going for ENG and have started doing some vestibular therapy.
If surgery is inevetible is it better to wait or remove it while its small, Any help or suggestions anyone has please feel free to help.
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Jenna1 and Dawn,
Hi and welcome to the forum. I split your two posts off into a new topic, so maybe more people will notice them. I think Jenna's got lost in the Thanksgiving feeding frenzy. :)
I will let others chime in on some of your questions, but a few quick comments: I have heard of Dr. Selesnick; surgery is not inevitable, but treatment while the AN is small is usually easier; and most of us would recommend getting a second opinion if possible, so you have a good perspective on your options.
Best wishes to you both, and please feel free to ask anything, and make yourself at home.
Steve
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I would also get a second opinion especially if you are being quoted a high percentage like 97% that you will not experience faciial sagging.
Until they get in there, they don't know the extent of damage. I don't mean to scare you b/c there is a really good chance that you will
recover like many others and not have facial issues but I would question someone who makes that claim.
Good luck.
Mary
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Until they get in there, they don't know the extent of damage.
I'm with Mary.
Doctors can certainly quote the statistics, but they can't predict which patients will encounter which side-effects. In addition, no doctor can guarantee you anything. Docs are only human and, while they do their best, they only have so much control over patients' outcomes.
A second opinion can't hurt, and it might help you.
Good luck,
Jan
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Hi, Dr. Selesnick was my 3rd opinion and all are saying that the tumor will grow...unsure of how quickly it will grow, but as I'm only 40 it will have to come out at some time. I have no hearing loss but some balance issues. Just wondering if anyone has ever had a small tumor removed and what procedure was used and how they feel after surgery/problems afterwards. thanks
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Jenna and Dawn!!
I am so sorry to hear you were just diagnosed!! i know how overwhelmingly this is :o but you found a very rich place - people and information here are priceless, really!!
What is important is to have more than one opinion and then compare them!!
Dawn
I did NOT have a small but instead very large tumour and surgery was the only option I have! You are right, in most of the cases tumour grows and as in my case it grows very fast (it just swelled!! but this does not happen in most of the cases - so it grows around 3 mm every year which is a good time for you to research.) There are people who do radiation or surgery on small tumours!! so it depends on hat you really prefer - to know that it is in or to have it removed, in 95% for ever!
I just wanted to drop a line and say you can PM me if I could be of any help!!
Best with your decisions!!
Hrissy
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I shall also extend a welcome to Jenna and Dawn to our Forum. We all sympathize with what you are going through right now and totally, believe me, totally understand your fears, frustrations, and anxiety over this unexpected development in your lives. It's not easy and it would be easier if there were only one method of treatment for everyone. But there isn't. There are several options to choose from. Microsurgery is one option and with that comes several options for the type of surgery that best affords the physician the most workable way to get into and take care of business. Radiosurgery is another option and with that comes the options of Cyberknife or Gamma Knife or some other radiation delivery system. And with that (whew!) comes the decision of a one-shot, knock 'em dead today like GK, or a knock 'em dead over several treatments that is usually with CK. Or you can do the watch and wait thing and just keep an eye on it with regular MRI's for awhile and see what happens. You may be one of the ones where the AN is very slow to grow or shows no growth at all. Sometimes this happens. You do have choices and it's always nice to do your homework and ask the right questions of your doctors. You can get second opinions from House in Los Angeles for free and often they will do a telephone consultation with you. They are a top notch facility, and specialize in AN treatment. Their full name is House Ear Institute.
My only advice is to find the doctor you are most comfortable with, make sure they answer all your questions, make sure that they have a balanced view of the different treatment options and make sure that they are up to date on the latest information and techniques. My pet peeve is the surgeon who will tell you that you might get cancer from CK or GK. Yes, you could. But you could also have a terrible reaction to anesthesia if they do surgery. So, there are minor risks in both camps. The point being that many surgeons aren't that interested in CK and GK because that isn't their training. And a radio-surgeon might not be interested in surgery for you. But there are many doctors who are well versed in both options and will look at you and help you decide the best course of action for your own particular needs. I hope you are lucky enough to get one of those.
Hang in there. Also, I wish I had read this article when I was first diagnosed. Please read this as you will understand your balance system and how it works and how it can affect you, even in the smallest way. I had some of these symptoms long before I knew I had an AN.
http://www.hearinglosshelp.com/articles/balancesystem.htm
Sue in Vancouver, USA
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Another good reason to have treatment while your tumor is small/med and no bigger than 2cm is there is a greater risk to damage to the facial nerve. Now having said this, there are people with large tumors, who have had surgical treatment with no facial nerve trauma. The doctors at the last symposium (you can order the cd's of the informative sessions from ANA website) feel there's increased risk with damage to the facial nerve when tumors are greater than 2cm.
If you are not having facial nerve issues now, and feel wait and watch is the way to go for a while, certainly do this as maybe your tumor will stop growing. I for one, would do all my research on treatments and talk to multiple doctors before hand, do the wait and watch for as long as you can and then when the facial nerve is involved, choose your treatment.
My doctor suspected I had a brain tumor in 1991, but ordered the wrong MRI (no contrast) and for 12 years life went on with all sorts of weird issues popping up and increasing. It was in 2004 I was finally diagnosed due to hearing loss and in 2005 I had surgery. My tumor was medium, did alot of bone damage as it grew, but my facial nerve was spared. My second surgery in 2008 my facial nerve was spared (once again) but this time with a dehischence. I do have mild palsy, but not seen by lay people only me and my doctors. I still have numbness to the tip of my tongue, some days I can taste well, some days I can't--no biggy.
I really believe this tumor was there from the very start of my life, but did not notice this until 1991. Doctors cannot prove this, this is just what I believe as I know myself and body intimately. I have always been able to detect idiosyncracies long before doctors.
Like you my symptoms started with balance, facial issues, and finally hearing loss. Most people start with hearing loss, then balance, then facial issues. Hope this helps you in making your decisions, I know this is overwhelming, but you do have much time to consider all and that's the "blessing" of this type of tumor--time and choices.
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I was diagnosed with a 2.6 cm AN which I treated with Cyberknife in August 2007. I had multiple consultations with surgeons and radiation doctors and I describe my experience, in particular, how I went about evaluating my treatment options, in detail in my website below (in my signature line). There's a "resources and tips" link on the site to some additional resources for newly-diagnosed patients, and I also describe in the "post-treatment" section how I've been feeling since my treatment. I hope it is helpful to you.
Francesco
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Hello. Brand new member as of this afternoon. I already feel better after visiting this forum. I have not been dxd yet but I just had an MRI this morning and I am thinking that a dx is likely. Just want to say thanks to all of you in advance. The science says this is very likely not fatal. I hope not as I'm only 43 (on Sunday) need to stick around for my 3 year old son! I, like many here, tend to research things to exhaustion. I've had about 7 or 8 years of gradual hearing loss. No balance issues yet. Minor facial tic every now and again (not sure it's even related). I think it's very cathartic to tell one's story and to hear others. I appreciate the openness and genuine concern here. I sincerely hope all you who are coming up on surgery or other treatment decisions the best.
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Jenna and Kabe
Welcome Newbies. I am so sorry you are dealing with this. Once I heard these ANs are so rarely malignant I knew I would make it through okay. This site has really been a true blessing for me. I am sure you will find it that way, too. It is shocking news but just reading the resilience and the tenacity of people here helped me. I even get quite a few chuckles here which I swear is a great medicine for all that ails you.
Take care and stay in touch. We want to know how you are.
Mary 8)
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Kabe -
hi and welcome to the forum; I'm glad you found us.
ANs are generally not fatal, unless they go untreated for a long period of time and/or get so huge that they cause major problems. I was diagnosed at the age of 45 1/2, had surgery, and lived to tell the tale :D I also survived BAHA surgery about 9 months after my AN surgery.
When do you expect the results of your MRI? and what part of the country are you from?
Jan
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Appreciate the thoughts and perspective. I live in Cincinnati. We have very good medical options here for a mid sized city but I'm open to traveling anywhere. The Cleveland Clinic is only a 4-5 hour drive. And of course Mayo is farther but they are the best of the best I think.
I tried to read the MRI myself (they gave me the CD) and it just confused me more. I noticed something "in there" but it was on the left side (my right is the problem). I think I should just not look at it and wait for the doc to call me (I would hope Mon.). He already explained what it could be - said there was @ 1/3 chance it could be AN or I could just have "an ear that sucks". I love when docs bring it down to our level. I wish I would have done something about this sooner. I'm kickin myself. I had this for 7 years or so. Now I've got thoughts racing through my head (including perhaps it's not NA and something worse). But I suppose if it were something worse I'd have seen other symptoms by now. If it is AN, I know the prognosis is excellent (as far as not dying) but I'm thinking more about the long term side affects and the recovery time.
BTW - I must say everyone is very helpful here but you seem to be always "on the job". I'm sure you have helped countless others. You've already helped me. Thank you.
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Hi Kabe,
Welcome to the forum. You are right, someone is always on the job; often it is Jan. :)
Don't hesitate to ask questions if and when you have more, even if it isn't an AN. "Ears that suck" are a specialty around here.
Steve
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Well I did some further research. Compared my MRI to example found on UC Hospital (Mayfield Clinic) Brain Tumor website. Sure looks like AN. I looked at the MRI a little closer and I had my side mixed up. It's def. the right side. I see something on the left side (much smaller). Not sure if that's anything to worry about but I'm sure the doc will tell me. I tried to interpolate the size based on the zoom level and it looks to be @ 2 cm x 1.2 cm. I've already been researching surgeons. Just wondering what advice you were given as far as size and options. I'm wondering if they could try to "zap" it first to shrink then remove if necessary. I'm a little glum about the possibility of SSD (just figured that acronym out) but my right "ear sucks" anyway so it prob won't be all that different.
It's starting to sink in that I very likely will need brain surgery. I'm sure all of you know where I'm at currently. I keep telling myself, however, that if I have to have a "brain" tumor, this is probably the best one to have.
K.
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You are right, someone is always on the job; often it is Jan. :)
Steve
Actually I've been slipping a little in the past weeks, but now that my house is finally clean and my Christmas shopping is done, I'm back ;)
Kabe -
what you see on the left side of your MRI may actually be what's in the right side of your head. MRI results are often confusing and you may be looking at the images backwards - or should I say opposite - so that left is in realty right. Regardless, it might be best to wait for an official diagnosis from your doctor before we all assume you have an AN.
If you do have an AN, life as you know it might change, but life will go on - and odds are it will be good ;D We like to talk about a "new normal" post treatment here, which basically means we are all normal, but not necessarily the same normal as we once were. For example, my new normal involves being SSD and it also involves having a BAHA (bone anchored hearing aid) which helps me with my SSD.
As you say, an AN is generally a lot better brain tumor than most, but it's scary and frightening nonetheless. If you should receive a postive diagnosis, I encourage you to contact the ANA and ask them to send you their informational brochures - they explain a lot and in terms that are easy to understand.
You mention surgery, but that isn't always a given. Depending on the size and location of an AN, radiation (zapping) or watching and waiting may also be options. My AN was 1.5 cm and on the 7th & 8th cranial nerves when I was diagnosed and I was given the choice of surgery or radiation. I was also told I could watch and wait, but not for an extended period of time.
Recovery and long-term side effects vary widely from patient to patient - same goes for post treatment symptoms. Most side-effects improve in time, but some like SSD don't. I hate to sound so wishy-washy, but every AN journey is different.
Mayo and Cleveland Clinic both have good docs who treat ANs; but if you don't find a doc at either place that you like, and if you're inclined to travel to the Chicago area, I have a wonderful neurotologist who does both surgery and GK (gamma knife radiation).
Jan
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My MRI showed a big white blob on the right side of the screen, but AN on the left. I assume this is just the way the pictures get taken and put onto disk.
Many here have kicked themselves at not having these things diagnosed sooner... many of us complained of tell-tale AN symptoms for years, but were still not given the right tests. Hope you find peace on this, as there is no turning back the clock, no 'coulda shoulda woulda'. At least it is now, and not another 7 years down the road.
Talk to a few different doctors, research well your options... eventually you will land in a place where you can make a decision. Knowledge is power and at least there is time to ask questions and get the answers you need.
Good luck and keep on postin'
Trish in Toronto Canada
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Thanks Trish. I finally realized that the MRI reverses the image (so what you see on the left is actually on the right). I also figured out how to use the viewing software. Bottom line is I didn't know what I was looking at. Like I said I compared it to one I found on the UC website and it looked very similar. However, my ENT called Mon. to tell my that I DO NOT have an AN. I asked him 3 or 4 times if he was sure describing the comparisons I saw etc... He assured me that I don't have and AN and that I just have "an ear that sucks". He's been doing this for a long time so I trust him. But there is something inside me that's still not sure. Could the scan reports have been mixed up? So I'm going to go in and see him to talk about it and hearing aid options. I must admit it's a relief that I don't have an AN, especially with all I've read about it here. But now I really have no answers other than I'm losing my hearing in my right ear. It's amazing how much I've learned about this in 5 days!
Thanks again and best of luck to you.
Mike.
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Jenna Dawn and Kabe:
Good luck to all of you as well. I am in your club now. I found out on Tuesday of this week that I have a AN as well. I had a hearing loss about 2 years ago with tinnitus (the wonderful sound of crickets 24/7) and found that my right ear had gone from 40% loss in the high frequency range to 80 to 90% about 2 months ago. I went in for the MRI and was told of the AN. I will be seeing Dr Rigamonti at Johns Hopkins in two weeks and Dr. Walter Jean at Georgetown at the end of the year as well. I have to say that this forum was a GREAT resource to find the doctors who know about this condition. I am a little concerned as well about my options, but have decided not to worry until I have been told my options. I will try to let the forums know about the two doctors. I will keep you all in my prayers. :)