Author Topic: 30 y.o female, 2.5cm leftside AN... any advice/comments appreciated :)  (Read 1168 times)

chelsea

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Hi everyone, new(ish) member of the club here. Long post ahead, thanks in advance for reading.

Jan 2017 started getting some weird symptoms like some facial tingling and strange vibrating in my ear, as well as tooth pains. I had recently had a root canal (I am convinced that the root canal made me aware of some of these symptoms) and thought that it was just after-effects from the dental work. Eventually, went to an ENT who noticed my hearing range in the high register was much lower on left side. I hadn’t noticed any hearing loss, just lots of strange ear sensations. Sent for MRI, results in SEPT 2017 on 2.5cm AN on left side. Was in total shock, not expected this at all. I have always been anxious about my health and whenever I would have strange symptoms in the past would think “oh I hope it isn’t a brain tumor!” And now this has happened to me… :S

Right now my symptoms are all super mild (except for sometimes severe anxiety) and are mostly some facial tingling, mild tinnitus, sometimes weird tooth ‘zaps”. Also I have commonly gotten some headaches and weird feelings in my head but I have had this for so long that I am not sure whether or not it is related to the AN (I know I could’ve had the AN for many years…so it is possible it was giving me these symptoms for years and I didn’t even realize!)

I am in Toronto ON (Canada) and have had preliminary appts with 2 doctors (Dr. Lin @ Sunnybrook and Dr. Cuisimano @ St. Mikes). Right now I am W&W until Feb when I have a second MRI (which will have been 6 months since first one) to see if any change.

I have been told with my medium size tumor that it is likely not “if” I’ll need treatment, but “when”. It would be amazing if the tumor didn’t grow, but I am trying to keep neutral in my expectations. My symptoms are extremely mild, the worst symptom is that I’ve been dealing with a ton of anxiety since the diagnosis, which I am trying to manage by talking to people, exercise, and meditation/yoga.

I have since become concerned that I have an AN on the other (right) side, because for the past few months I have been having some similarly weird sensations (full ear, some vibrating) on my Right side??? All the docs say that it could be just from Eustachian tube issues or something similar, or that I am being hyper-sensitive and not to worry, since there is nothing on the MRI from August. BUT the last Doc says that there is a very SMALL chance that something that looks like blood vessels in the MRI is actually a small tumor on the other side and I should do a contrast dye MRI just to rule it out, since I have been concerned about it. I have now convinced myself that I have a second one, and am just trying to get them to do the contrast for the next MRI but it might be too short notice.

For thinking about treatment: I have read the studies saying that GK is best for quality of life afterwards, especially because I really want to avoid permanent facial nerve paralysis. I know the risks of the radiation causing malignant tumors later on is very small, but as a young person (30 yrs) with a history of cancer in my family, this really freaks me out. My major fears for treatment are: malignant tumor, permanent facial paralysis, and terrible vertigo/headaches/cognitive issues.

I am not sure how to make the decision, if/when I need treatment… I know the risks of both, and it seems obvious that surgery has way more risks, but somehow I haven’t wrapped my head around the idea of radiation. Does anyone have a similar story and any advice on how they made their decision?

Apologies for rambling post, thank you in advance for any advice on how you made the decision re: treatment, and any other advice.

Thank you for reading and any comments!

Kathleen_Mc

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Re: 30 y.o female, 2.5cm leftside AN... any advice/comments appreciated :)
« Reply #1 on: January 18, 2018, 04:40:32 am »
Hi Chelsea
Greeting from another Torontonian!
I started this journey @ 23 and I hadn't any choices to make, it was " hurry up and get on the table and pray you survive the surgery". Now I don't say that to scare you but to reassure you that if the doctor is willing to watch and wait for a period of time things are not dire. (I also did watch and wait with the re-growth I had of the original tumor so I know how anxiety provoking this all is).
The one thing I always wished was that I could have had gamma knife, it was not an available treatment in Toronto at the time, it wasn't really even discussed as the tumor was too large when finally found ( not diagnosed for years ). I lost the 7th - 10th nerves on the left side.....hearing lost, balance lost, facial issues, eye issue's, swallowing issue's and now 25+ years later I have cardiac issue's and I'm only 50.....possibly related to loss of the vagal nerve ( but not confirmed).
If I were you I would get into get another  opinion at the gamma knife center (  at Toronto Western I believe).
If your tumor is dealt with when it is small enough gamma knife is a better way to go from all that I read. Yes there's the risk of it causing cancer later in life......we all have the risk of developing some form of cancer as we age is the way I look at it.
It certainly needs to be determined what they are seeing on the other side, you should be having the MRI with contrast. You likely have to have the doctor order it that way.
And welcome to the club nobody wants to be in.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

chelsea

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Re: 30 y.o female, 2.5cm leftside AN... any advice/comments appreciated :)
« Reply #2 on: January 18, 2018, 10:09:10 am »
Hi Kathleen,

Thank you so much for taking the time to read my post and reply.
I have my 2nd MRI in Feb and then will have appointments with Dr. Lin and Dr. Cuisimano again, to see what they say and ask more questions. I will ultimately have to choose to stick with one Doc, but right now I am not sure who I prefer and want to see them both one more time.
Yes, I am strongly considering Gamma Knife but am still struggling with the decision. For now I will wait until they tell me treatment is necessary, although I am in that middle stage where if it gets too much bigger than GK won't be an option.

It is really comforting to hear from another Torontonian.

I am curious to hear how other people made their decisions, and to know if there are other Torontonians here!

I am sorry to hear you have cardiac issues... :( Hopefully you are still able to lead a somewhat full life?

Thanks again and take care,

chelsea

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Re: 30 y.o female, 2.5cm leftside AN... any advice/comments appreciated :)
« Reply #3 on: January 19, 2018, 03:00:45 pm »
Anyone else? Feeling pretty anxious and would love to hear some more comments/suggestion/voices...

Thanks in advance :)

Jill Marie

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Re: 30 y.o female, 2.5cm leftside AN... any advice/comments appreciated :)
« Reply #4 on: January 19, 2018, 09:32:20 pm »
Hi Chelsea,  I'm sorry I'm not really any help with your questions but just wanted to say Hi.  I had my surgery 25 years ago and no one told me there were any choices, if there were no one said so.  With that in mind I'm sorry you have a tumor and that you have to make a choice but then again as hard as it is to do so thankfully you do have a choice.  I hope as you do that you don't have a tumor on the other side as well.  There have been times when I worried that I might but it turned out to just be an ear infection or allergies, thank goodness.  I know it's hard but try not to worry about something that you don't know is a problem, hopefully your February appointment will put your mind at ease on that issue.

 I was 35 when I had my surgery for a Facial Nerve Tumor so I understand your concern about being fairly young.  On the bright side, I've been married for 44 years and at the same job for 23 years despite my medical issues.  You too will get through this and we are here to help when we can.  The board isn't as active as it use to be, I've been told a lot of the old timers like me are on a Facebook site, I don't do Facebook so I'm not sure.  Those that are on here are very helpful as well.  I stick around because I've been helped by this site a lot over the years and want to repay that help.  Take Care, Jill :)
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

RGG

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Re: 30 y.o female, 2.5cm leftside AN... any advice/comments appreciated :)
« Reply #5 on: January 19, 2018, 10:23:49 pm »
Hi Chelsea,

Another Torontonian here, I was diagnosed a couple of years ago in my mid-thirties with a ~3cm AN.  I ended up having surgery about a year ago with Dr. Akagami in Vancouver, and so far I'm happy with my decision since the tumour was completely removed, without any major side effects (except hearing loss). 

I too was considering radiation at the beginning, but all dr's I met didn't recommend it, even the Gamma Knife centre in Toronto (they said ultimately it's up to me and were willing to try).  One thing that worried me about radiation is that I read a lot of cases where it may work initially, but in a few years the tumour starts to grow again, and then surgery may become more difficult (according to some surgeons).  Also if you have surgery after radiation, you can't have radiation a second time in the case a small piece of the tumour cannot be removed. 

I haven't met Dr. Cusimano, but I've read on here that he does both surgery and radiation, and gives the most unbiased recommendation (which was not the case with all doctors I met).  I would think for your tumour size, radiation should still be an option, but you'd probably need to do it before it has grown any larger. 

With surgery on the other hand you'd have a bit more time to decide where you want to do it.  In Toronto there is another surgical team, Dr's. Rutka and Tymianski at Toronto Western.  If you decide on surgery you also need to decide on the type (translab or retrosigmoid), since different doctors have different preferences, and each has its own risks and benefits.  If you still have useful hearing then retrosigmoid will give you a chance to retain some hearing.

Ultimately it's a tough decision, and I wish you good luck in your further consultations and MRI's. There is a lot of information on this site from old posts that really helped me learn about all the different options. Feel free to pm me for any questions.

Rumen

midee

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Re: 30 y.o female, 2.5cm leftside AN... any advice/comments appreciated :)
« Reply #6 on: January 20, 2018, 09:54:06 am »
Hi Chelsea, I was W&W for almost 5 yrs. My last MRI show almost doubling tumor size. I am scheduled for surgery in 2 weeks, Feb. 2 at University Hosp. in Cleveland. My tumor had stayed at 9-10mm for all those years and is now 2cm. It grew that much this past year. I am a candidate for GK and surgery. I elected to have it removed. I did not want to go through radiation and then the possibility of doing it again or surgery at a later date. My age also played into my decision. I am 67 y.0. and it very good health.  I've heard all good things about my surgeons, Dr. Bambakidis and Dr. Megerian. I'll let you know how I'm doing in a few weeks.
It's a hard decision, but once you make it, you should find peace.
Dee

chelsea

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Re: 30 y.o female, 2.5cm leftside AN... any advice/comments appreciated :)
« Reply #7 on: January 20, 2018, 02:28:17 pm »
Hi everyone, thanks for your replies -- it is really comforting for me.
To RGG - as a Torontonian, how did you get on the waitlist to see Dr. Akagami? I've heard really good things about him in Vancouver but I was told it was like a 2-year waitlist to see him. And I've also been told that Toronto has some top experts in this field, so I feel like it is easier to have any treatment done in my hometown.. but I am curious about your experience traveling there? And which type of surgery did you have?

i find it interesting that none of the doctors recommended GK to you... mine isn't much smaller than yours and all the docs have said it is a good option and that I am the one to have to make the decision. I kind of wish someone else could just make it for me!

Thanks for replying :)

Echo

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Re: 30 y.o female, 2.5cm leftside AN... any advice/comments appreciated :)
« Reply #8 on: January 22, 2018, 06:41:24 pm »
Hi Chelsea,

I'm another AN'er from Toronto.  You have hit the jack pot with Dr. Cusimano.  He is a world renowned neurosurgeon and he was one of the specialists instrumental in bringing the Gamma Knife to Toronto.  If you contact ANAC (Acoustic Neuroma Association of Canada) located here in Toronto you will get a ton of valuable local info and contacts.  I highly recommend requesting a referral to see Dr. John Rutka at UHN.  Dr. Rutka and Dr. Cusimano are the top two specialists in Toronto for dealing with Acoustic Neuroma's.  If you are willing to look out of Province then Dr. Akagami in Vancouver would be your next best Dr.

You can't go wrong with any of these specialists they all have amazing reputations and skill!

Good luck on your journey.
Cathie 

« Last Edit: January 22, 2018, 06:43:48 pm by Echo »
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

Greece Lover

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Re: 30 y.o female, 2.5cm leftside AN... any advice/comments appreciated :)
« Reply #9 on: January 24, 2018, 11:19:20 am »
Chelsea,
Sorry to hear about your story.  Sounds like you've connected with some good people in the Toronto area, which is great. Just a couple of thoughts that come out of my own experience (and one of the problems with this forum is that all the advise is anecdotal and not really scientific, so keep that in mind.)
1. These thing do generally move slowly, and you do not need to be in a rush to make a decision.
2. Take the time to deliberate and then make a decision and don't look back. You can't second guess yourself.
3. I want to address your anxiety.  Anxiety was probably (and continues to be) the hardest part of this for me, and it was something I really did not expect.  I was anxious before the surgery, of course, but it was actually worse afterward.  I, too, convinced myself that I had a tumor on both sides, and felt all sorts of ghost symptoms, etc.  I ended up seeing a therapist for it, which really helped a lot.  So, please don't feel like you're out of the ordinary for feeling anxious. Anxiety is a real medical condition and is going to be part of this experience. 
4. Finally, here's how I made my decision, in case it is helpful.  For me, the tumor was relatively small and I was told I had a 60-70% chance of saving my hearing.  So, I went for it.  I also wanted the thing out of my head and be able to eventually put it behind me.  I was 40 at diagnosis, a bit older than you, but the medical advice I got was that 40 was young for radiation type treatments.  (however, I know there is different opinion on that subject.)  Keep in mind that all doctors tend to have preferred treatment modalities.  Some work in surgical centers, some are experts in the radiation, and this likely has an impact on their recommendations.  So, just ask a lot of hard questions and take your time. I have never once regretting choosing surgery, although I did have quite a good outcome. 

Please DM me if you want to follow up, especially about the anxiety!

Micah
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

tinab

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Re: 30 y.o female, 2.5cm leftside AN... any advice/comments appreciated :)
« Reply #10 on: January 25, 2018, 02:55:27 pm »
Hi Chelsea, I am 46 and was just diagnosed with a 9mm AN on my right side.  My symptoms are mild ...just tinnitus.  All doctors said I was lucky to have pushed the issue and been diagnosed when it is considered small.
Anxiety ... yes I have it .  Work thru it everyday.  I have talked to three highly regarded specialists in the states including the House Clinic.  All presently recommend Watch and Wait and see what happens at next MRI in May. I too have been told because of my young age it is not "if" I will need treatment it is "when".  As others have said all doctors have had different opinions on next steps .  Gamma Knife / Surgery.  I think it just is based on their experiences and preferences. 

All three said Gamma knife is an option .  One stated it is preferred for hearing preservation .  The others stated I should consider surgery next .  This is mainly because of my age and my ability to recover from the surgery. Also with the size it maybe easier to remove.  Both recommend the middle fossa , one to save the most hearing .  One issue is they sever your balance nerve in the surgery but apparently you will regain most of it over months.

I still have not decided on what my next step will be , but I have decided to truly wait for 6 months and give my mind a rest as presently there is not much I can do , BUT I can enjoy the fact that my symptoms presently are minimal.

One doctor kept stressing the fact that this is not life threatening but may impact my quality of life eventually.

It is hard and it is frustrating but you are not alone.

Although it is hard to be light hearted about it I try.  I have accepted that this is my cross to bear now and my tumor is part of me and may have been part of me for awhile now.  So I myself have named it "Annie" instead of calling it a tumor. (I also have two small children which I have not told so I really don't want to talk about my tumor in front of them.) I blame stuff on her sometimes (my fatigue, my anxiety, my fuzzy head)  but mostly I tell her to stop growing or grow slowly. It is my own way of doing something.

Don't get me wrong I have days where I simply cry , but I try to focus on the good days.

Keeping everyone here in my thoughts.  I am thankful to have a community to share with.
Diagnosed 12/17 8.5mm x 4mm
Watch and Wait
5/18 MRI (6 months) - Stable

2020

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Re: 30 y.o female, 2.5cm leftside AN... any advice/comments appreciated :)
« Reply #11 on: January 31, 2018, 07:36:58 pm »
Hi Chelsea, 
     Sorry you're experiencing worry and concern.  I will pray your tumor stays small for a long while. Can still remember how weird it was to learn I had an AN.  That happened in 3/2009. Took time to get used to the idea that a tumor was the cause of the sensations I felt.  Any change from air pressure, sinus cavity pressure, any slight ache in my face, or headache became more worrisome for awhile.
    Having been W&W since 2009,  I finally got used to the condition.  Like you, my tumor was/is small.  A second MRI in 9/2009, 6 months later, showed no growth.  Thankfully there was nothing too significant in the 2010, 2011 MRIs.  So, I comfortably took an MRI break until 2014.  Now that it's 2018, I'll go for another.  The neurosurgeon told me it's smart to do CK at 3cm to avoid traditional brain surgery.
    I'd like to think that the advantage of  having a slow growing tumor is that technology keeps improving as you're watching and waiting.  But I think this is the year I'll start reading about cyberknife in case this is "my year".  If it is, I got 9 years of technological improvements in the surgical methods while I was waiting  :)!!  Wishing you all the best with your condition.

2020

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Re: 30 y.o female, 2.5cm leftside AN... any advice/comments appreciated :)
« Reply #12 on: January 31, 2018, 09:40:07 pm »
PS.  While researching Cyberknife tonight I found an encouraging response by someone named TUMBLEWEED to a post called "Re: Cyberknife coming up" on December 04, 2012, 02:48:01 pm.  Try to find it... Lots of great information plus description of the result. and that was all 5 years ago or more... I think we're gonna be OK! : ) : )   

 


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