newly diagnosed with many questions and emotions

[MissDoumont]

Hello everyone!

I am so happy that I found this forum.. I don't know anybody who has an AN so it feels nice being able to find support from those who are suffering the same thing.

8 days ago I was diagnosed with a 3.2 by 2.3 by 2.3 cm left side AN.  My AN has mass effect on areas of the brain stem (adjacent pons, middle cerebral peduncle) and trigeminal nerve.  Although I know and understand that AN are very slow growing .. the thought that it is compressing on vital components of the brain worry me...

My symptoms are:  Left hearing loss (profound but do not have a percentage), tinnitus that gets even louder in loud environments, balance/gait unsteadiness at times, extreme fatigue and facial tingling (feels like I just left the dentist!), and the left side of my tongue is completely numb.. I always chomp on it by accident when eating and I can't taste anything.

I have received news that I have an urgent referral to Dr. Westerberg in Vancouver British Columbia.. I get to see him in 4 weeks instead of waiting the dreaded 6-8month wait list.  Apparently he is highly respected and very good at what he does.

For those of you who have been living with, watching and waiting, receiving treatment, waiting just like me for suggestions, I have a few q for you:

Based on your knowledge about my symptoms and An information.. do you think I am a candidate for radiation at all? or only surgery?

anyone with similar dimensions and compression issues? please share your experience if you don't mind

is it normal to feel anxious/worried/emotional? getting better every day...

also, how long do you think it will be until I do receive treatment.. I see the specialist mid October for a consultation and was told "he wants to see you asap"... but still constitutes of a bit of a wait

Thank you everyone for your support!!! I am a newbie - and I will return the favor to others one day!

From,
Meagan (NICU Nurse from Canada)

[MarlaB]

Hi Megan...

Welcome to the club no one wants to belong to.

I'm just across the border from Vancouver (in Bellingham) and if you haven't met Dr. Westerberg yet, you are in for a treat. He is awesome! You'll get great information advice from him (and from ANA...so watch your mailbox if you have asked for your free packet of info...)

Breathe. You are NOT alone!!

Marla B.

[mcrue]

Hi,

I believe as a rule of thumb surgery is indicated for tumors over 3cm; however, I 've read cases where radiation was successfully used on 3.5cm. It largely depends on the team of doctors where you get information from.

You don't have to wait that long for free reviews from word-renowned teams, especially if you're willing to travel. Anyone is free to mail a copy of their most recent MRI and medical history for free consultations. Please keep in mind this is strickly my "Top 10" personal list:

Dr. Lunsford - Gamma Knife at UPMC Pittsburgh, PA
Dr. Chang - Cyber Knife at Stanford, CA
Dr. Kondziolka - New Jersey, Manhattan, New York
Dr. Sheehan - Univ. Virginia - Gamma Knife - UVA
Dr. Schwartz - House Ear Clinic -  Los Angeles, CA
Dr. Friedman - Keck Univ- California
Stephen Tatter and Michael Chan - Wake Forest University North Carolina - Gamma Knife
Clinton A. Medbery, III, M.D. Southwest Radiation Oncology - Oklahoma
Dr. ALLAN THORNTON - Proton Beam Therapy - Hampton University
Dr. Stieg and Dr. Selesnick - NYC
Dr. Michael Seidman - florida
MDM Cancer Center in Texas

And perhaps your local Gamma Knife, Cyber Knife, or Microsurgery specialists.

Best wishes with your journey.

[MissDoumont]

that's great, thank you so much!! it is hard to be patient in this process..but I suppose I have no choice. I will look into those recommendations..

thanks!
Meagan

[ANGuy]

Anxiety, worry etc?  Yes, normal, everyone has this.  Knowing it is half the battle, don't feel compelled to be a basket case over this as it won't help matters.  You mention that you are getting batter in that regard, good!  Since you are someone who has extensive experience with serious medical matters, I'd say while our condition is serious business, we are better off that most of the people (infants?) that you have to care for every day.

As far as radiation, you'll get different opinions, but my uneducated opinion, since you asked, is that yours is too big and already interfering with important structures.

As far as having to wait around for treatment, consultations, tests etc, yeah it's going to be nerve-wracking.  Mine is small, and I have been observing it for 2+ years after realizing I'd already had it for 8 years.  I can't council you on the Canadian system, or how much urgency there is for you to get treated since I am an American and my tumor is much smaller than yours.

[lilith]

Hi Meagan,

This is my very personal experience: I have a very similar AN-size than yours but mild loss of hearing on my AN side. Balance was ok. After seeing about 6 different doctors (4 surgeons) in Mexico City, 5 of them suggested I should try Radiation. So, I did in order to avoid possible consequences from surgery. I had my Radiation on May25th 2016. My experience is that the symptoms get worse little by little. My hearing is not as good as it was before Radiation. And my balance is not good for example in the darkness or if I move my head rapidly. It is not easy to wait and see how things progress after 6 months, 1 year, etc. I am not a patient person so I am still learning to listen to my symptoms and maybe have an otherwise unwanted rest. I like to think that if one tolerates the symptoms for a year, then life could be ok after this period.

Best,

Lilith

[Bomberman]

This is my very personal experience: I have a very similar AN-size than yours but mild loss of hearing on my AN side. Balance was ok. After seeing about 6 different doctors (4 surgeons) in Mexico City, 5 of them suggested I should try Radiation. So, I did in order to avoid possible consequences from surgery. I had my Radiation on May25th 2016. My experience is that the symptoms get worse little by little. My hearing is not as good as it was before Radiation. And my balance is not good for example in the darkness or if I move my head rapidly. It is not easy to wait and see how things progress after 6 months, 1 year, etc. I am not a patient person so I am still learning to listen to my symptoms and maybe have an otherwise unwanted rest. I like to think that if one tolerates the symptoms for a year, then life could be ok after this period.

I hear from the radiation forum that it takes up to 2 years to start getting better after fractionated radiation. So your recovery symptoms to seem normal.

[lisab66]

I feel like I wrote your post!  Almost complete hear loss on the left side, lips are numb, youngsters is numb and has little taste, mass effect in the pons and cerebellum, I "miss step" all the time and headaches. Mine is also on the left side. I am no a candidate for GK. I will be having trans lab 9/29. The whole thing seems surreal!

[InnerGrace]

I had a 2.4 cm mass removed on Memorial Day of this year.  Radiation was not an option for me, as far as my team of docs was concerned.  It was pressing on brain stem....messing with my hearing, balance and facial nerve...(I now have facial palsy which is improving gradually)  As others have stated, the option of radiation or surgery, is totally up to your team that you choose, and  yourself.  Me, personally, if I was given the option of surgery or radiation, I would have chosen surgery anyway.   But that's just me... get it out, get it done.  Now as far as the emotions?  You are absolutely  normal in your feelings... it is quite a surreal diagnosis.... I have been using that word surreal quite a bit now that I'm on the other side.. it hardly seems I went thru the before stage where you are at and actually surgery... other than the hearing loss, facial palsy and the wonkiness I experience from time to time....you most certainly will get thru this and you'll be a stronger person for it... I think all of us AN warriors become stronger..... it really puts a different perspective on life... the way we view others, the way we view ourselves and the way we view life in general.  It is a sobering experience.  I understand being anxious in wanting to see someone right away, but I think you'll be okay waiting the 4 weeks.. .unless  you want to consult other doctors in the meantime...  As with me, even though they told me over and over again that it is a slow growing tumor, as soon as I knew it was in there... I just felt it was growing leaps and bounds...  I found out this past Tuesday at my 4 month post op... that each of our tumors..(slow growing as they are) that they have a rating scale on how fast/slow each AN grows per individual.. 10 being the fastest growing... They informed me that mine was at a 3 growing.... very VERY slow growing... stating that my tumor was probably making home in my head for 15 to 20 years..   Crazy.   You'll get great advice here and might I recommend some facebook groups as well.... if you have a facebook..  They have been very helpful as well....  https://www.facebook.com/groups/54550333642/ and a Christian group if you wanna go that angle.  https://www.facebook.com/groups/AcousticNeuromaChristianSupportGroup/

[mcrue]

...other than the hearing loss, facial palsy and the wonkiness I experience from time to time....you most certainly will get thru this

Hi InnerGrace,

Thanks for sharing your experience. Hopefully our new member may bypass some of those side effects by selecting a fantastic team.  Selecting an experienced team can really mitigate some of those side effects and result in successful outcome.

In addition to the terrific offerings provided by the ANA, here is a short synopsis from the Michigan Ear Institute regarding an Acoustic Neuroma:


http://www.michiganear.com/ear-services-acoustic-neuroma.html


Best wishes!

[caryawilson]

I would guess that radiation is NOT recommended for you. As I understand, a tumor will slightly expand in the process of dying. When a tumor is already pressing on the brainstem this further expansion could restrict the flow of CSF, causing major problems ..

Anxiety is normal but while NOT the best experience of my life it was much better than. I had imagined.

[Kathleen_Mc]

Meagan
Hi
I too am in Canada (Ontario) and a nurse (mental health). Do you have a gamma knife center there ?
To me it sounds likely surgery will be the only option given the dimensions and proximity to the brain stem but truly only a doctor can decide on that.
It is hard to say how long it will be until you have treatment, too many variables. When my tumor was found I waited a week to see the doctor, it was hurry up and get on the table (I think surgery was like 2 & 1/2 weeks after Dx). Even if we had gamma knife here in Canada at that time (which we didn't, not sure it was even in the States yet) I wouldn't have been able to have it (no room for expansion).
It is totally understandable you would be anxious/afraid, I was so much so I really didn't remember anything said to me after "tumor" and "surgery", and I wasn't really thinking ( I  didn't put together acoustic neuroma and hearing.....hence didn't realize I would loose my hearing completely with the surgery).
Do your research, make your list of questions, be sure to take someone with you to appointments (extra set of ears) and breath!
Kathleen

[Director]

Hi Meagan,
  As the others already said, yes it is 'normal' and you are now not alone!
The ANAC ( Canada's ANA) had a great event earlier this year, with speakers on many AN-related topics. Because the health system is different, you may want to get your hands on the presentation. Here is the link: https://www.anac.ca/2016-anac-symposium-agm-toronto-ontario. Carole is the Executive Director, so give her a call if you can access it- there may be a fee.
Best wishes,
Allison Feldman
CEO, ANA
director@anausa.org

[WhatnotGems]

Emotions will run you through the wringer. I have gone through them with an Pituitary Adenoma I was diagnosed in 2005, the first 2 years were really hard until we realized it was growing extremely slowly. I am still monitored with yearly MRIs for the Pituitary Adenoma. 4 years ago I notice a loss of hearing in my right ear. I have had Annual MRIs, this year I had my MRI done at the VA and they called to inform me I also have an Vestibular Schwannoma aka Acoustic Neuroma on Jun 28th. We stopped 2 of my medications Humatrope (HGH) and Evamist in May as I was feeling off and these medication do have die effects. The first 6 weeks after diagnosis I was more stable, I spent my time planning and preparing in case of surgery, and eating. When I met with the Dr. Kyle P. Allen and spoke with Dr. Eric P. Wilkinson, the AN was there 4 years ago. I was not informed by the local doctors. My hearing has a grade d (the lowest it can be) which means it cannot be saved and is not useable. We decided to watch and wait until next June when I will have a follow up MRI. Lately my emotions are all over the place again.
I am tired, sleepy, shaky and get dizzy (feeling off ?), and sometimes nauseated. I have been through some of this before with the original diagnosis.
With any major change in your life and this is a doozy you will grieve for what was. Knowing you are grieving does help. But you have to work your way through the grief.
 
The seven emotional stages of grief are usually understood to be shock or disbelief, denial, bargaining, guilt, anger, depression, and acceptance/hope. Symptoms of grief can be emotional, physical, social, or religious in nature.