ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: Farmgirl88 on March 19, 2011, 10:29:22 am
Here I am, another newly diagnosed AN patient, overwhelmed with information and feelings. I was diagnosed March 1, 2011 with an AN measuring 7mm x 6mm x 4mm (right side). I have had one-sided tinnitus for about 3 years, and finally mentioned it to my GP this year. She sent me for a hearing test, which to my shock showed I have some hearing loss (they haven't given me a specific number), and after that I went for an MRI which discovered the tumour. So far I have no other issues, just the hearing loss and extremely annoying tinnitus which is there 24/7.
I am 48 years old, and sure wasn't expecting anything like this to come from going for a check-up! I am in good health, otherwise. Right now I am waiting for a referral to a neurosurgeon at Sunnybrook in Toronto. I still haven't heard anything about this appointment--do these normally take a while to get? I did contact the AN Association of Canada, but their message board is not working right now, so I hope you don't mind me posting on yours. They did give me a list of some members in Toronto, and I have talked with a couple, whose support has been very helpful right now.
I am trying to wade through the mountain of information that's out there. (My GP said they do not do radiation--maybe she needs to read up on this! I am the 2nd patient she's ever had with an AN.) Surgery sounds scary, but then I am in great health right now, and think about what happens if I wait for it to get bigger, then I'm older and it's harder on me then? I have been reading about the Gamma Knife treatment, which sounds like it might be a good option, too. I am not really thrilled with the idea of waiting for this thing to grow and give me more problems before we act on it. I would really like to save the hearing I still have, if possible. It's so hard, the unknown.
I have a wonderful husband and three young adult kids. Two of them don't even know about this yet, as they're away at school and I don't want to upset their studies.
Hi Lori and welcome to this forum .....
We have many Canadians who are active here so you are certainly among friends!
Although the diagnosis of an acoustic neuroma is terrifying, remember ANs are almost always benign and slow-growing so you have plenty of time to do your research.
A 7 mm AN is well within the range for having all three options, watch and wait, radiation treatment, or surgical removal. The important thing is to find doctors who have treated many, many acoustic neuromas, not just a few. This is one time when experience and skill do really count for a successful result. You are right that you probably want to seek treatment while you are still healthy and with relatively few symptoms, but you should not feel rushed (or pushed) into making a quick decision.
If the research gets overwhelming, back off and just let it simmer for awhile. If your symptoms begin to change is the point at which you will need to be more active in seeking treatment.
Best thoughts. Clarice
Welcome, Lori ~
I'm sorry you're the recipient of an acoustic neuroma diagnosis but glad that you discovered this website forum. As Clarice stated, we have many Canadian members/posters so you're welcome here. Your AN is definitely within the range for Gamma Knife (radiation) and, unless a doctor says otherwise, that is certainly a viable option. Your GP sounds uninformed about acoustic neuromas but that is not uncommon. I'm not familiar with the medical bureaucracy operations in Canada but you do need to seek out a physician/specialist that has extensive experience with treating acoustic neuromas. That can be more difficult than it seems, but it is vital to stacking the odds for a good outcome. Observation ('watch-and-wait') may be the initial approach a doctor may suggest, based on the relatively small size of the tumor. However, it will eventually have to be addressed and your eagerness to do so is, in my opinion, the right attitude to take, especially with your desire to save what remains of your hearing ability. Please stay in touch via these forums and update us when you've had your neurosurgical consultation. Thanks.
I too am a Canadian from Ontario. I live in Hamilton (Stoney Creek) and I see a Dr at The Toronto General. It took me 5 weeks to get in to see him. I was seeing someone in Hamilton and had surgery in Hamilton but I did not care for his doctoring, a very long story.
Your tumour is relatively small and your symptoms minimal, so you are a good candidate for watch and wait. The doctor might prescribe imovane or ativan to help with the tinnitus. Radiation is available if that is the treatment you choose. As Jim stated your family doctor is uniformed. My family doctor always tells me that he isn't the expert, and I probably know more about this than he does. I have to agree with him on that, thanks to this forum.
Explore your options and if you feel you need a second opinion, go for it.
Hi Lori and welcome from another Ontarian.
Sorry for your diagnosis, but at least your AN is small, giving you plenty of time to research all your options.
You are in the right place in this forum, there is a lot of collective experience here.
Generally in Canada doctors favor conservative management (i.e. watch and wait) for small ANs. They will most likely suggest that you get another MRI in 6 months to establish if it is growing, before you do anything.
Don't be afraid to ask for referrals - there is no bureaucracy involved (you just show your health card), but there is an issue with wait times, as they will tend to prioritize patients who are at more risk.
The Sunnybrook team where you have been referred is probably the most experienced in Ontario so you are in good hands. I was told that they do at least 2 AN surgeries per month. If you are interested in the radiation option you should also ask for a referral to the GK centre at Toronto Western. Be careful though with them, their opinions may vary widely depending on who you consult with (they rotate, so different doctors may be present at different weeks). I can give you a lot of insider information on the centre and who to ask specifically to see, if you want to PM me.
There is also a new CK (Cyberknife) centre in Ottawa. We have heard may good things on this board about the doctor running it. One forumite recently had treatment there.
Feel free to ask any questions you have - personally I have consulted with all the major teams that are experienced in ANs and there are many other Ontarians here.
Hello Lori and welcome to our club!! I am sorry you had to find this, but you'll be glad you did! Everyone before me has given great information, but I wanted to say hello. Please feel free to ask questions, there are no dumb questions on here! This is also a great place to vent, on ANYTHING...keep us updated on how things go! Good luck! :)
I was a Toronto girl until a few months ago. You will see from my siggie that I am also the proud owner of a very small AN (actually, marginally larger than yours ... but then, around here, one could just say that is simply the difference in the MRI machine!)
I was diagnosed just over two years ago - I would have been 36 years old (I think, maybe 37 years old). I hadn't even noticed my tinnitus (but it must have been there) but had a routine hearing test as part of a work medical package. My hearing loss is very minor - at the time about 30db PTA (pure tone average) with good word recognition. Regardless, unilateral hearing loss is a bit of a flag (not a definitive one mind you) for an acoustic neuroma. I was referred to Dr. Rutka at Toronto General (Yardtick, aka Anne Marie also goes to Rutka).
Like MK (Marianna) indicated, Canadian doctors favor conservative management (watch & wait) - Dr. Rutka has written numerous papers (published in good medical journals!) on the topic. I have a copy of his 10 year study follow up on W&W if you are interested (PM me please if you are interested). According to his study, something like 67% of small AN tumors don't show any noticeable growth in 10 years and most who will fail conservative management, will fail within three years. [I am three years this year, fingers crossed for no growth at my July MRI.] Follow up is key, hearing loss is definite but potential no worse than having any treatment (GK or surgery).
I am W&W. I am young-ish (now, turning 40 later this year), mother of four very very very active children (oldest is 8 years old), I work full time, and heck just quit a good job in Toronto and moved everyone to Calgary for a new opportunity. This tumor doesn't slow me down - I am lucky as some people on these forums are severely impacted by symptoms, post-treatment issues and fast growing tumors. I do stagger at times, and my hearing is weak in noisy situations (did I say I had four children - this house isn't quiet and I misunderstand my husband a lot. I get creative with my interpretation because 'whaaaat'? gets boring fast.)
I acknowledge I will lose my hearing (regardless of the choice of treatment), I may need treatment this year, next year, five years, ten years or maybe twenty years down the road. I can't guess. I know I won't die from this tumor. I am diligent about my care, I know my options, and always make sure I go to my appointments as they are dictated by my doctors. I can't do much more than that - so I don't worry too much about it.
I should also say that I am tremendously upbeat, find humor in almost everything and a bit energetic so alas, you get the positivity of my mood tonight.
Do your research, I would suggest asking your GP for an ENT referral who can manage your case (and offer you conservative management supervision should you chose that route - I wouldn't want to be with a GP if I was going for the long haul. I would highly recommend Dr. Rutka - ANs are one of his specialities. If you aren't close to Toronto, we also have an Ottawa person ... Tenai(???) who will have some suggestions for ENTs) The Gamma Knife centre in Toronto can offer you management care if you want to go the GK route. I HIGHLY doubt neurosurgeons will offer any type of long term care - it isn't their strength. Also, don't expect any warm fuzzy supportive comments from neurosurgeons or the GK centre - a few of us can say how discouraging the appointments were from some of our referrals.
Tell your kids - my kids know I am losing my hearing and can't hear well in noisy environments. I told them something is growing in my ear/head and I won't die from it. (I think my eight year old knows I have tumor - but again, not a big deal to me, not a big deal to her.) Obviously, your kids are older so are even better able to manage the truth - a benign cranial based tumor (you don't necessarily have to refer to it as a brain tumor - mine isn't a 'brain' tumor due to its location - however, everyone is a bit different!)
Good luck, stick around - a very supportive group. People can have very similar tumor sizes but will chose very different treatments. Everyone is different and luckily for most of us here with small tumors, the choice is typically our own - no wrong answers.
Welcome aboard. I am so sorry to hear you have an AN but I am also happy to hear you got a diagnosis. Often many are misdiagnosed. I was originally diagnosed with migraine. I am from Brampton. I had surgery in Vancouver, but consulted at Sunnybrook, Trillium in Mississauga, Toronto Western, House and Vancouver (VGH). There are no clear 'right' answers when it comes to AN, more there are 'best fit for you' scenarios.
Feel free to contact any of us. We are all willing to help and support you through your AN journey. You have time. Deep breaths are a staple.
Welcome to the forum. I am from Toronto as well. I was diagnosed in March 2009. I saw Dr. Nedzelski at Sunnybrook but I understand that he is now semi retired. He referred me to Toronto Western where I had GK in June 2010. So far I am O.K. with slight discomforts which I had as well prior to being diagnosed. I have two young adult children also. I am also 48. My daughter actually helped me find this forum. They will understand when you explain to them what it is. It does sound worse than it is but it's actually not that bad. This is coming from someone that was totally freaked out when diagnosed. If you have any questions, do not hesitate to ask. By the way, the wait time to see the surgeon could be about 8 weeks. I would ask to go on the cancellation list. Take care.
Thank you, everyone, for taking the time to reply...it's so good to communicate with others who are on the same journey.
Yesterday I got mail from Sunnybrook saying I have an appointment with Dr. Chen on April 27! That's faster than I thought! I will be having an audiogram first, before I see him. That's good, because I have only had one, and I still don't believe its results (does that sound like classic denial to you?). I am starting to see the same names of doctors being mentioned by folks here, and also from the other contacts I have had. Rutka's name comes up a lot! I would like to explore the GK option. Some people are totally against radiation, but I am open to it.
There is an ENT specialist in Orillia that I will be seeing if we decide to go the watch & wait route. I'll have this appointment later in April, then we'll see how that goes and go from there. Thanks for the offers of info about other doctors, etc.
I am planning to tell my other two kids when school is finished next month at Easter. I am currently experiencing some interesting word recognition problems--we've had some good laughs about my misinterpretation of some things people say. I am trying to remain positive about this whole thing, and it has definitely been a wake-up call for my husband and me, about just what is important in life.
When the information gets too overwhelming, I am lucky we have the farm here to keep us busy (as well as my day job off the farm). It's maple syrup season right now, so I spent the weekend helping boil sap. It's great therapy!
Welcome to the AN club! I've read all the answers to you post and there's not much more that I can add. Learn as much as you can - that's what helped me the most so far. I am a watcher and waited based on that otherwise I'd probably be recovering from some procedure right now. I'll do that when the time is right.
I agree - sugaring time is great therapy!
Thanks for the update Lori.
Boiling sap? I never gave a thought to how one gets maple syrup but it's as good a therapy as I've ever heard of.
(Some of the saps I've met could do with boiling! ;D)
Keep us up to date if you can please? Good luck and best wishes to you and your family.
Went for my appointment with Dr. Chen today at Sunnybrook in Toronto. I had another hearing test, and it was pretty much the same as the one I had 3 months ago: moderate hearing loss at high frequencies in the right ear, with good word recognition. (although I know there were a number of words I could not make out ???)
Dr. Chen showed us (my husband and I) the MRI and said it's small, and he couldn't operate on it without sacrificing my hearing, due to its location. He is recommending watch & wait until it demonstrates growth. He did say this is something I (we) will have to get used to and accomodate (eg. my word mixups) but for now, since I don't have other symptoms like balance problems, it should just be monitored. He did talk about the tinnitus problem, and discussed tinnitus maskers and possibly a hearing aid to help.
He is not a fan of radiation; my age (48) and unknown long-term effects of radiation 20 or so years down the road make him uneasy about that treatment.
So, I guess I'm a watch & waiter now, until this tumour decides to grow. I do feel a little frustrated with that decision, that I don't have much choice. I guess I'll just have to wait and see if this thing starts growing, or my hearing gets a lot worse, before we can investigate the radiation option. I did want to look into that, though. I am told that I will continue to lose my hearing, but that's a given, no matter what treatment.
I'm supposed to get on with life, and not think about this, but right now, between the fullness feeling, and the howling tinnitus, there's a constant reminder that there's something in my head that's not supposed to be there. Maybe time will make this better, that I'm still in "diagnosis acceptance" mode. I do need to try to not stress, as he did say that contributes to tinnitus, but then working in a quiet library doesn't help, either! :P
Take it from someone with 13 years experience. If you don't pay attention to it, you won't hear our tinnitus. :-)
Got your PM ... and will send the study onwards!
I love maple syrup season.
I would push for a GK consult (in Toronto) so you have another point of view re radition. While my instinct is to distrust radiation, not sure much evidence exists to suport it (or refute it ... at least over a 30+ year time frame!). Many of the GK and CK patients on this site are in the 40-50 year old range so not convinced it has traction (the 30 year out theory). The GK specialist will have a different view. (I find great peace knowing what I would chose if this tumor shows grow - you may find the same with another consult or two!)
Welcome. I am new here too. Just diagnosed back in March as well. Right sided hearing loss with tinitus for about 2 years. My GP kept telling me nothing wrong and just take decongestants.ugh....
Anyway I finally went to an ENT who sent me for hearing test (I flunked) then an MRI which found the AN. It is quite small, less than 2cm.
It wasn't too hard me for to decide about Gamma Knife vs. surgery, only because I have 3 small children, ages 9, 5, and 2. I am only 40 and what I have read is most younger people do not get GK, they do surgery due to age. BUT, I do not have a big family, very little help with my kids, and all I really have is my husband (who really isn't that huge of a help - lol). So, I felt that the best thing for me was GK. I researched and there are pros/cons for every thing. I would have honestly preferred doing the surgery to remove the tumor but due to the above circumstances, I just had no choice.
Everyone has different reasons for doing what they do, and I felt like since the tumor was small, if in time it did not go away with the radiation, then later on I could do the "real" surgery when my children were a bit older and could handle it better.
Either way, I would definitely look at both of your options. If your dr is saying "no" to radiation, find out why. My dr was not biased. He did both Gamma and Brain Surgery. He recommended GK due to the size, location, and outcome.
Good look with your decision. Take your time if you can. I did rush into it, but I wanted this done with sooner than later. I have lost at least 1/2 of my hearing and the dr said it would most likely be gone by another year. So, that is why I went ahead rather quickly. Plus it all worked out well. Just had it done Tuesday and other than side effects from the steroids, I am doing pretty well.
This forum is extremely helpful, with very knowledgeable people who have great advice.
I did post a few days ago about my experience with the Gamma Knife. It was not bad at all. (look for proudmomof3)
Hi Lori and Welcome (just came across this post tonight)
I also am from Ontario. My story is that my kids kept telling me to get my hearing tested. After consulting with my doctor who put me on nose spray at first, she finally referred me to an ENT near my town (Beachburg). This ENT told me I was going deaf from old age( uhmm, I was like 47). MY gut feeling told me to get another opinion. My GP referred me this time to an ENT in our nation's capital. At that time we didnt have the cyber machine. After consulting with him, he wanted me to go into W &W...I said 'no' that I wanted it out. The ENT referred me to the neurosurgeon that he pairs up with, Dr Benoit. So on April 7/2009, I underwent translab. They couldnt remove the entire tumor without damaging the facial, so he removed what he could...so now its a yearly MRI with another special (radiation Doc) and when Booger decides to grow, the game plan it to nuke him via cyberknife. The docs in Ottawa are great...Dr. Sinclair and Morgan at the Civic Campus are great. PM me anytime you want. Willing to talk on phone as well...