Newly diagnosed.In a panic. But everything will be alright Left 3.2x2.2x3.7cm

[ImpatientPatient]

Hi! New woman in AN Town! 37yro, newly diagnosed.

This is my story so far.

Went to the ENT 07/27/2017, hearing test showing severe hearing lost from the left side. She asked for an MRI… I was in shock! An MRI for a hearing problem? I tought that she was going to ask for some hearing aid or something.

Went for the MRI on 07/31/2017, the same day, 4 hrs later I got the bad news call… yes, you have an AN 3.2 x 2.2 x3.7 cm.. yeeei!

She gave me the number for an Neurotologist and the first appointment that he has is on 08/18/2017…so far I´ve been reading, informing myself and learning as much as I can. Me and my husband are watching and reading as much as I can and it´s helping us to understand whats going on.

The waiting for the appointment its driving me crazy, I´m a very controlling person, I want to know exactly when everything it´s going to happen, but right know the only thing that I know for sure it´s that the tumor it´s there, that the symptoms (headaches, dizziness, fatigue, tinnitus) are getting worst, as if my body have the permission to show the symptoms now that I´m fully aware of HIS presence...

I´ve been trying to clean my diet and trying to get moving and be as healthier as I can... but I get tired after an easy yoga class or walking our dog in the park! hahaha. I´ve been trying to meditate, relax myself, reading things about mindfulness, but...I´M FREAKING OUT! hahahaha I want to be zen, but until I have my first appointment I think it´s going to be impossible..

I haven’t told anyone yet, just my husband and my sister. I don’t want to tell my parents until I have my first appointment, they are old, I don’t want to put that kind of news on them until I have further information… and of course I feel guilty about it but I don’t want to be the "sick daughter” just yet..I can wait! hahaha

I just want to introduce myself and if anybody have any recommendations about how to deal with the tinnitus, the anxiety, the waiting and also the “anger” episodes… the “why me?” situation.

Thanks a lot for your time, It´s very helpful to read all your stories. Sorry if I make any mistake, English its my second language.

Thanks again and keep on the good energy!

[IL17JJ]

Welcome to the Group!

I can relate to the "panic" and worry and the need to jump in and control this situation completely. I had my MRI on a Saturday and had the Online Results on the following monday. I was not expecting anything that was discovered. To make matters worse I never got a call from my Primary Care Doctor to tell me anything. I had to call them and the return call took 4 days. Talk about freaking out...

Slow down, Relax, take time to read and ask questions here. Get prepared for your DR. visits with written questions. I found it difficult to tell  my family and friends anything when I didn't have the answers myself, so I was very selective, and I still am, with who I share my diagnosis with.

This may be the biggest thing to happen to you so far in your life, but it can be something that you can handle and get through with help from your family and friends and your own inner strength. The knowledge and collective wisdom and experience here is an extremely valuable resource.

Please jump in and reach out to others on the Forum and try to stay focused on Day by Day and not letting the anxiety of uncertainty cloud your mind.

Clarity & Focus. Peace of Mind even in confusing Times.

Jim

[ANSydney]

Welcome ImpatientPatient to the club that nobody wants to be a member of, but everyone is friendly. 3.2x2x2 cm means that it's much longer in one dimension than the other (and unusually so). Are they including the Internal Auditory Canal dimension in that measurement (the cone of the ice-cream cone appearance)? Some do and some don't, but apparently it should not be included. It would be interesting to find out. Have you got a CD of your MRI and had a look?

How long have you had symptoms?

[Enri]

Welcome.

You seem to be in what I call the deer in the headlights phase.  Try to read as much as you can so that you can be better prepared for your visit with the doctor.  Somewhere in the ANA side there  are a list of questions that you may want to ask the doctor.  I know that it is difficult but try to find something that you like to do to reduce anxiety  ( walk the dog, yoga, bird watching...)  .  I found that until I made a decision I was anxious and at times all of the information available seemed overwhelming. 

I find that tinnitus is worst when there is not much noise around.  So I always have music or a soothing sound going.  I sleep with the sound of the ocean from my iPod.  the sound distracts from the tinnitus. 

Good luck to you.

[ImpatientPatient]

Thanks guys for your responses.. I update the size, I just received the MRI report.. the size is 3.2 x 2.2 x 3.7cm

@IL17JJ sorry to hear about your MRI, thanks Jim for your words, and it´s true, we need clarity and focus. I will keep on the researching and so far, I have 3 appointments next week...I will keep you guys posted. Thanks again!

@ANSydney as I said... I update the size...  3.2 x 2.2 x 3.7cm. I was wondering if the tumor grows 1mm a year (in average) and I´m.. this little daemon has been growing MY WHOLE LIFE? hahahaha it is super weird! Thanks for your response

@Enri I love the "deer in the headlights" phase! So true! Thanks for the tip about the tinnitus.. I will do that!

Thanks again!

[gunns]

Welcome aboard "New Woman"!

I think we all know where you are coming from.  And all of the previous posters have been spot on with great advice.  Fear and anxiety normally come from lack of understanding an event.  As previously said by others here keep digging for all the information you can get.  Understanding what you are facing and why you are facing it will help you in gaining more control over your emotions.

In March this year I went into the VA to see about hearing aids.  I had a lot of hearing loss and tinnitus on the left.  They did several tests and suggested an MRI.  They never said they suspected a possible tumor.  To make a long story short they, the VA, never told me they found a tumor.  About three weeks later I became suspicious as I hadn’t heard anything from them.  I had no idea what was going on.  I’d never heard of a Vestibular Schwannoma.  I reviewed my VA medical records on line and there it was on the last page.  I had to look it up to find out what it was.

Like you, I too was a “Deer in the Headlights”.  I went straight to the internet and came across this website.  This website and its members have been absolutely fantastic.  The knowledge I gained from this website has had an enormous calming effect on me.  I was able to find a surgeon outside the VA to help me.  My tumor was removed on Jul 25 just three days after my 69th birthday.  Doctors Friedman and Gionatta at USC Keck took care of me.  They and their staff were fantastic.  You couldn’t ask for anything better.

I lost all hearing in my left ear permanently and have minimal facial issues which should correct itself in short order.  But that little bugger in my head is GONE!  Looking back would I change my mind about surgery – "ABSOLUTELY NOT!”

There were two major turning points during this journey that had a significant impact on how I dealt with this tumor – when I made the decision to have surgery and when I woke up post-op and was told it was all gone.  When I decided on surgery and had a date for the surgery I had taken control of my life again.

I wish you and your husband the best and remember it’s all about having a positive attitude and gaining knowledge!

[ANSydney]

@ANSydney as I said... I update the size...  3.2 x 2.2 x 3.7cm. I was wondering if the tumor grows 1mm a year (in average) and I´m.. this little daemon has been growing MY WHOLE LIFE? hahahaha it is super weird! Thanks for your response

A 3.2x2x2 cm tumor, presumably also including the intrameatal portion in the largest dimension is very different for 3.2 x 2.2 x 3.7 cm. Have you looked at the CD of your MRI to confirm dimensions? (Everyone shoudl do this!) These tumors grow on average of 1 mm per year, however it's not 1 mm/year every year. Growth is rapid in the first few years. Is about 2 to 4 mm after that and after about 5 years usually stop growing.

Without a second MRI. you won't know growth at this stage.

[Jet747]

Hello Impatient,

I can tell you, you are a step ahead of me.  Unfortunately, I didn't find this forum until after my surgery.  There are many helpful people and tips!

I was also 37 when I first learned about my tumor.

I don't really have any concrete advice for you other than to say it is a "journey".  Meaning, this is a new chapter in your life.  Leading up to the surgery it was a roller-coaster of emotions as my wife and I processed all the new information. 

If you have any questions or would wish to actually talk to someone, PM me.  My wife (a social worker) and I (a logical finance person) have spoken to several people after our experience.  Sometimes it is just good to know you aren't alone and the world hasn't ended.

Best to you!
Jet