Another "wait and see" but getting close to 2nd MRI

[melsbrock]

Hello everyone - what a fabulous resource for all of us!  I was diagnosed last Oct with a 5cm AN on right side.  Head fullness, medium bad ringing, and hearing loss.  Am going to have 2nd MRI in March and wondering if anyone knows about surgeons or doctors in the Austin, TX area.  I am trying to be calm and reading all the posts is a shot in the arm, so thank you.  Best wishes to each of you, Monica

[suboo73]

Monica, 

Hi there - and welcome to the Forum [but sorry you had to join this exclusive club!] 
I live in northern Virginia, so i am sorry, i cannot help you with doctors in the Austin, TX area.
However, i will tell you that my husband said he has had ENOUGH of the snow, and could we please move to Texas!
So i might need to consult with you about physicians later on....!

Best wishes on your 2nd MRI [in the tube o' gloom as it is also known]!
I really don't like having the MRIs but i am SO grateful that we have this type of diagnostic equipment.

Please keep us updated on your progress.
My thoughts and prayers are with you and your family.

Sincerely,
Sue

[Jim Scott]

Hi, Monica - and welcome! 

I'm sorry to learn about your AN diagnosis but glad you've found the ANA website discussion forums.  I'm across the country from you (Connecticut) and so, I'm unable to recommend a doctor in the Austin, Texas area - but we do have some Texas members so I'm sure they'll be able to help.  I hope you'll be a frequent contributor to the forums.

Jim

[LisaP]

Hi Monica and welcome,

I can't help you find a doctor, I live in Massachusetts, but I am W&W and my anniversary will be the end of March (31st) to be exact.  I have been W&W for two years now.  My next MRI is in Oct of this year. 

Good luck and stay in touch.

LisaP

[melsbrock]

Thank you so much for the replies.  This wait and watch is weird and I try not to be nervous but sometimes, well you know.    I guess some folks are in the W & W stage for years?  I am learning to live with my "inner ring tone" and the numbness.  When I met with a local surgeon he recommended just taking the whole acoustic nerve out because trying to get tumor off might agitate the nerve further and make ringing worse.  I guess taking the whole thing out will get rid of ringing?

I got opinion from Dr. Fayad at House and he recommended taking it out sooner rather than later because there is fluid around it and would be easier to remove.  But three other Dr.s say to wait until the 2nd MRI is done and let's see what we have.  I guess my biggest fear, besides facial involvement , would be permanent tinnitus louder than I have now and no hearing in that ear to muffle it. 

I send blessings to all of  you and I am so grateful to know there are others in this boat with me.  Thanks, Monica

Yes, here in Austin we have no snow but believe me the hot, humid summer is hard to take sometimes!!!

[Pooter]

Monica,

I was just in Austin!  Great town!  I live in Houston, so I'm not familiar with the doctors there..  But, if you want to travel to Houston, I know of a few great ones.  I have friends and family there in Austin and travel there fairly often...

Unfortunately, tinnitus is something that most of us deal with before and after treatment.. The good news is that after some time, you adjust to it and you can't consciously here it much anymore..  That's true of many people.  It's NOT the case that surgery will get rid of it totally.  Basically, as I understand it, tinnitus is your brain making up "sound" in the absense of genuine sound that comes from the nerve.  Having surgery may or may not affect the sound, level, or pitch of your tinnitus.  It's extremely annoying but you will adapt and adjust..  Certain foods sometimes make it louder, sometimes weather conditions, sometimes drugs (like caffeine), etc..  You'll learn to identify those "triggers" that make it worse and learn to avoid them..

Welcome to the forum..  You've found a good support system..

Regards,
Brian

[melsbrock]

Brian,

Thank you so much for your reply.  I read your blog too and our cases are VERY similar.  I too kept getting treated for ear infections, felt like I lived on Z-Packs and was flabbergasted when I got the news about vestibular schwannona.  I actually had been hoping for a hearing aid or something just to deal with the hearing loss and ringing!  When the Dr. first told me it was a little tumor I actually asked if removal would be an outpatient procedure!

I am interested in what you found to be triggers.  I do notice when the weather is socked in and rainy my head feels fuller.  I travel for work at times and have noticed that I feel the best on an airplane.  I haven't noticed caffeine affecting it too much and hadn't even thought about food.  It feel the WROST when I have to mow the yard or use the blower - yikes!  Also when my 14 year old son and his buddy are over on the requisite Austin garage band practice that my ear and hearing are sensitive, but this could just be their music - gotta love 'em!

My mother is a nurse by trade also and I'm sure will want to be here for the first part at least.   I will know more in a few weeks after the MRI.  Thank you for your note and the BLOG.  Best to you and you family, Monica

[Pooter]

Monica,

Glad you liked the blog..  I need to update it sometime since I'm almost 2 years out instead of 8 when I first wrote it..  Things are better even now than then..

To be honest, I haven't found too many triggers on mine.  Caffeine doesn't seem to trigger it too much and I haven't been flying since surgery so I don't know there either.  Luckily, my tinnitus is pretty mild and can ignore it most of the time.  I have noticed that it's louder when I'm tired, however it's not unbearable.   Others will be able to tell you their 'triggers' although everyone is going to be different.

It's not uncommon for folks to get worse tinnitus or more feelings of fullness with bad weather.  As I said, if you find anything that triggers it, you'll learn naturally to avoid those things if the changes in tinnitus level bothers you.  When I first started having tinnitus around the time of my diagnosis, I remember asking people on the forum about it and how to get rid of it, etc..  Many people told me that I would just adjust to it and that many of them can't really hear theirs unless they try consciously to hear it.. Between you and me, I thought they were crazy..  But, as I sit here today, I can't hear it unless I consciously listen for it..  Now, being in a loud environment for an extended period of time tends to make it worse for awhile after leaving that environment.. For example, being at a concert isn't painful or anything, but I can definitely 'hear' my tinnitus for awhile after the concert is over and I'm at home.

My mother's a nurse by trade also, so I know what you mean about her being around after.. I still remember having to call her and tell her about the diagnosis and hearing her absolutely break down crying on the other end of the phone.. One of the few times I've heard her cry.

The best advice I can give is to find a doctor experienced in AN removal and preferably one that is not opposed to the idea of 'debulking' and using radiation on the remainder if needed.  I'm curious why they're having you do a 2nd MRI with a 5cm tumor..  It's not like they would be checking for growth because it's already big enough that it needs to be removed more than likely...  Or, perhaps did you mean 5mm?

Regards,
Brian

[leapyrtwins]

Hi, Monica.  Welcome to the Forum.

I'm wondering the same thing as Brian.

Just how large is your AN?

In your first post you say it's 5 cm and in a subsequent post you say it's "small".

5 cm is considered to be a large AN and usually patients who have a 5 cm AN aren't given the choice of watching and waiting.

I'm hopeful that your AN is 5 mm and that your 2nd MRI shows no growth 

Jan

[melsbrock]

You guys are good!  The initial MRI reads 5.0 X 10 mm - very different from 5 cm!  I guess that is pretty small?

One opinion I had was just to remove the entire acoustic nerve and "be done with it".  What kind of hearing results did you have after surgery?

The tinnitus is definitely loud enough so that I am always aware - I constantly try to have sound somewhere to muffle it and sleep with classical music at a higher volume than in years past.  I have facial tics too and sometimes "tingle" on my head where it is and has been numb for over 5 months.  I am really scared of surgery and am in awe of how well everyone reports they have done with recovery. 

I get kinda bummed out that I didn't have the resources to just go to House and get it done based on Dr. Fayad's opinion but feel comfortable with local doctors.  I have an uncle who is an orthopedic surgeon in Albuquerque and he has been a dear about getting opinion from UNM Med School and  he too mentioned that Dr. Kemper here in Austin is excellent. 

So I guess it is all down to the wait.  How was your anxiety level during your waiting period? 

Appreciate your time and words tremendously, Monica

[Pooter]

Yeah, 5mm is definitely smaller than 50mm (5cm)..   That's definitely on the small side, however given that you're already having facial tingles and numbness, that means the facial nerve is being affected in some way with the tumor there.  Usually, at that size, you have all options on the table (CK, GK, FSR, Sugery, etc..), but with radiation treatments there is a very real risk that the tumor will increase in size before hopefully it shrinks and dies.  Given that the facial nerve is being affected by it's current size, that gives me pause in thinking what might happen if it swells due to radiation.

Hearing results after surgery?  Yeah, I didn't have much going into surgery and came out SSD (single-sided deaf) on that side as expected.. I think I was given a snow ball's chance in... well, you know for my hearing.  So, I expected to be SSD after.  The good news is that you will either adjust to being SSD if that happens or you have options (BAHA, TransEar, Ponto Pro, SoundBite, etc..).  It won't be like 'normal' hearing, but it supposedly does help quite a bit..

Anxiety level?  Looking back, I was a bit anxious about the surgery leading up to it (thankfully, I only had to wait less than 1 month between diagnosis and surgery) but there generally comes a time just before treatment where you become eerily calm and ready to just get it over with and start the healing process.  You kinda get into a mode of gearing up for it; kinda like gearing up for a sports game, or fight or something...  You're nervous leading up to it, but there comes a time when you decide you've done all you can, did your homework and due dilligence and you place your trust into the hands of God (if you believe) and your doctors treating you.

With surgery, as with any treatment, there may be bumps in the road after treatment during the healing process, however you generally can get through them with the help of family, friends and us here on the forum especially those who have gone before you.  Our collective knowledge of what to expect, what to do for certain things, how to handle certain things, etc.. is unmatched ANYWHERE.  The shared knowledge we all have of AN treatments and recovery is better, in my opinion, than even the doctors who treat you.  While they've learned about it from books and treating patients, we've all lived it and are more than willing to share our knowledge..

So, what's the next step for you?

Regards,
Brian

[leapyrtwins]

Monica -

glad to hear your AN is small.

Mine was 1.5 cm at the time of diagnosis and almost 3 cm at the time of surgery (approximately 6 weeks later).

I went into surgery with good word recognition, but diminished hearing in my AN ear.  I chose the retrosigmoid approach in the hopes of saving what I had left of my hearing, but my AN was wrapped around the hearing nerve and; therefore, it had to be sacrified in order to remove the entire tumor.

I opted for a BAHA, which I have found to be a wonderful solution to being SSD.  Some find that the TransEar is a great solution.  Others choose to adapt to being SSD without any kind of hearing aid or device and that seems to work well for them.  It's a personal choice.

Once a made my treatment decision and scheduled my surgery I found a great sense of calm and didn't worry about it at all.  This isn't my usual mind set; I tend to be a worrier.  I guess I just decided that I wanted the AN out of my head, I was confident in and comfortable with my doctors, and I just did what I had to do.

You'll find that as you embark on your AN Journey, you're a lot stronger than you think you are.

Good luck,

Jan

[melsbrock]

Thank you Jan and Brian,

You know how grateful I am for your kind words.  I will share what happens with my 2nd MRI.  Blessings, Monica

[Julie E]

Hi Monica, I was around on this forum for about a year after my surgery in 2008 under JulieE.  I had my surgery here in Austin with Dr. Craig Kemper and Dr. James Kemper.  They are awesome, and I would be happy to meet you sometime to retell my story, and be a local sounding board for you concerns.  Keep us in the loop about your second MRI...
Julie

[Rivergirl]

Monica,
Watching and waiting is tough, you know you have this thing in your head causing symptoms but yet would having surgery cause more problems on top of it.  I will say that reading the information from ANA is so helpful and being on this forum learning about our not so common conditions and more importantly knowing we are not alone is a great help. Best of luck on your journey here.