New Diagnosis, waiting for an appointment with a specialist

[edgedancer]

I was diagnosed with AN on my left on December 10. I had read the MRI myself on the 8th, so I was 'ready' for the diagnosis on the 10th. My ENT who ordered the MRI said he was going to pass my information on to UMD because they don't treat AN. It is hard for me to understand the size of the tumor because the MRI lists 2 dimensions, but the ENT said it was "moderately large" and my guess right now with the two dimensions is that it's about 2.9 cm. The part by my brain stem is 17.6 mm x 15.1 mm x 15.5 mm craniocaudal and the part in my Intra canalicular component is 11 mm x 7 mm x 8 mm. Based off what I've read online because it's in my IAC and by my brain stem it is considered large, and so I added the two largest dimensions together to get about 2.9cm. would be interested if someone thinks I'm misunderstanding.

I have mild hearing loss - 80% word recognition on the AN side
I have tinnitus - which has been worse lately in general (why I went to the ENT) and has been much worse this week... do we think this is due to the increased stress of diagnosis. Or is there any world where I have a fast growing tumor?

I have talked to UMD, John Hopkins, and UCSD trying to get an appointment and am in a waiting pattern with them all.
UMD: waiting for someone to call me back because the receptionist couldn't schedule me before March, and she wanted to get me in sooner
John Hopkins: waiting for them to verify all my information
UCSD: waiting for them the verify my information.

I've uploaded my mri images and results to all of them, but it's been really stressful not having more details about my situation. Best I can do is get online and read about AN and about other peoples situations.  Here are some of my concerns:

Hearing preservation: From what I read it sounds like with a large tumor hearing preservation isn't very likely despite me having decent hearing in my AN side and that really bums me out.

Balance: I feel like most sites talking about AN focus on the hearing preservation/loss and the potential for facial paralysis, but it seems like the majority of personal stories I read talk about balance problems indefinitely. The majority of my hobbies are active (volleyball, pickleball, bouldering, hiking) and it seems like the chances of having balance problems are high which I'm betting means several of my hobbies are out, or at least minimized (probably can't play on my volleyball team if I might struggle with balance at any moment, bouldering sounds unsafe with balance issues, hiking alone is probably out of the question and hiking any treacherous/narrows paths also seems problematic). I struggle with depression and the main ways I am able to combat that is through my active hobbies. While I understand that I can probably still be active after the surgery I am worried about a) the time it will take before I can be super active again, and b) worried that all my activities will have to be new activities because my current ones aren't safe.

Dying during surgery: probably an unrealistic concern, nevertheless...

Future Family: My husband and I would like to have kids one day, and I turn 35 in a few months. It seems like I probably need to have surgery and recover before that is even an option, and that adding continued pressure to the timeline of being able to carry my own kids is scary.

Do I have a fast growing tumor: With my tinnitus being worse my hearing feels like it's getting worse, which is making me stressed than maybe I have a fast growing tumor. Maybe that doesn't matter because of the likelyhood of me loosing my hearing anyway, but I don't know.

 
That's all for now. If anyone has read this entire thing - thank you! If anyone has suggestions on how/who I can meet with sooner than later to get some of my many questions answered I would appreciate the recommendation.

[ESH]

The waiting is very stressful. I can't help you on the reading of the MRI as there seem to be different ways to express things on MRIs and I am far from an expert. I am much older than you and therefore in a slightly different position in a lot of ways. I am not a doctor, but I will share what I have learned.

First, like you, I started off with a mild hearing loss. (It has progressed but my understanding is that it does not only do so.) One of the "weird" things about these tumors though is that increase in symptoms is NOT the same thing as increase in size. My tumor has not grown. My hearing is considerably worse and my tinnitus is somewhat worse than when I was diagnosed a year ago. As my doctor commented, my tumor is biologically active even though not growing.

Will you lose your hearing in that ear? Hard to say. Can you find ways to mitigate the effect if you do lose your hearing in that ear? Well, some of us adapt more than others. I am an amateur musician so the hearing loss has been tough. But I continue to take piano lessons and practice. I continue to listen to music but I got headphones that somewhat mimic stereo sound in only my good ear. I do lament that music concerts seem less nuanced to me.

When you go to the specialist for the first time, they likely will not know whether the AN is growing. Only time will tell you that for sure. But even if it is growing today, it may not be tomorrow, and even if it is not growing today, it may grow tomorrow. Welcome to the world of uncertainty.

As for balance, if you treat the AN, your balance might get worse. If you don't treat the AN, your balance might get worse. If you have surgery, your balance might get worse. If you have gamma knife, your balance might get worse. if you watch and wait (which is very much a treatment option at my age and, realistically, less of a good treatment option at your age(, your balance might get worse. But it might not. Also, you should know that physical therapy for balance can make a difference.

And don't assume that you will not be able to do the sports you do now. I am almost 70, I have osteoporosis, I have some minor balance (for which i compensate well) and I still hike. I snowshoe. I am more limited by my back issues than my AN.

You might want to take a look at Emily's blog. She was diagnosed with an AN when she was in her late twenties and deals with some of the issues that you are raising. She also lives a very full life. https://luckybraintumor.com

Good luck!

[DanFouratt]

Edgedancer,

Sorry to welcome you to the club. Let me first say you are in the toughest part of the process, the unknown. As ESH said, first we are not doctors and here second there are no guarantee outcomes regardless of what you decide. I see you reached out to many great places.  I also did that and had reasonable response times, give them a chance. We are more impatient then the system. I learned this when my young son was diagnosed with cancer.  I wanted to do something the next minute, it took a little time.  I had to remind me of this event as I went through my decision journey.  This time is stressful but the tumor is slow growing so we have time on our side.

This is the medical condition where the patient has the say on what to do. I stayed in watch and ignore (wait) for two years.  I then quit (retired) from my job and focused on this issue.  I found this site and met someone in person that help greatly, I discovered I was not alone. That gave me the courage to move forward. I reached out to many across the country and received returned calls and meetings. They will get back to you soon.

I put together my information in what I call a decision matrix. I worked full time on this several years ago.  If you would like to see this let me know and email me at Dan4att@gmail.com. Keep on moving forward.

Good Luck on your decision journey,

Dan

[Mark F.]

Welcome to the club nobody wants to join.   I am sorry you're a member, and we all know how stressing the diagnosis can be.  I am also from Maryland and I had my surgery 7 months ago on May 13th.  I had decided early on that I wanted the surgical option.  For me personally it was the possible cancer risk that steered me away from radiation.  I know that risk is extremely low, but in my mind so was getting the tumor in the first place and I didn't beat those odds.  My surgery was done at John's Hopkins, although I also had a second opinion from Hershey Medical center.  I really liked the facility at Hershey, but they would listen to what I wanted and kept pushing the radiation.  My surgeons at Hopkins were Dr. Xu and Dr. Chen.  And surgery couldn't have gone better.   Pre-surgery I was very unbalanced, had headaches all the time, even had a few episodes of choking on food because I couldn't swallow properly.  Also I was considered legally deaf in my left ear but not totally deaf.  Seven months post surgery and I feel better than I have in years.  No headaches other than normal ones everyone gets from time to time, no balance problems, and no swallowing issues anymore.  I do still have a lack of taste and although they said they were able to preserve the hearing, honestly I can't hear a thing out of that ear but it was so bad before I really don't see much change.  As for sports, not only would I not recommend stopping, I would recommend doing as much as you can to stay as active as possible.  It really seems to help the recovery process.  Pre-diagnosis I ran several 5k's a year, and I kept doing them until my balance was too bad, and even then I ran on a treadmill with handrails, and if I couldn't run I walked as fast as I could.   Post surgery I was walking, not well, but walking on the 2nd day, and by the end of the week I was doing 1/2 mile at a time around the hallways.  After about 6 weeks I started jogging again, and I felt well enough to push it further so I started running again, and just a few weeks ago I ran the Turkey Trot and not only finished, I actually set a personal best time.  Now you may be wondering about age.  I am 56 and about to turn 57 right after Christmas.  I too was stressed about not waking up or waking up really messed up.  The mental health side of this can be really rough.   Try to focus on the positives.  What you can do and not what you can't.  Don't be afraid to ask questions, and don't be afraid to basically put your foot down about what you want.   

[skier]

Hello,

Sorry that you have joined the AN club. I just have a few overview remarks.

You have chosen well for the three consulting MDs/programs and they will be able to guide you and answer many of your questions. I know personally that waiting for consults is very hard, but just know you have done the most crucial step well. The future decisions will be much easier after expert consultations.

I hope you can get the new patient material called "Free Patient Kit" from ANA. THe link is top center on this page. It's a complicated diagnosis, and so getting some high quality educational booklets is very helpful, I believe.

Take the process a little bit at a time. That's my seasoned advice. I worried and stressed enormously (for two years of watch and wait) until I made a commitment to surgery, and then I tried to put worry in its place.

I waited a few months for surgery and during that time, I tried to focus on thinking positive and getting mentally and physically ready for surgery. It helped. I'm not diminishing any feelings (shock, concern, fear), as I had all those, but just know you can keep moving forward and it gets easier when you have a treatment plan and expert interpretation by expert MDs.

Best,
Skier

[edgedancer]

Thank you all for your responses. I genuinely appreciate it. I was definitely spiraling last week, and hearing from other people was very validating and helped calm me a bit.

Will you lose your hearing in that ear? Hard to say. Can you find ways to mitigate the effect if you do lose your hearing in that ear? Well, some of us adapt more than others. I am an amateur musician so the hearing loss has been tough. But I continue to take piano lessons and practice. I continue to listen to music but I got headphones that somewhat mimic stereo sound in only my good ear. I do lament that music concerts seem less nuanced to me.

I'm sorry that you have had to deal with hearing loss as well, especially as a musician, that must be very frustrating, but I'm really glad that you've been able to continue to do what you love, but I'm sorry that it's not what it used to be

And don't assume that you will not be able to do the sports you do now. I am almost 70, I have osteoporosis, I have some minor balance (for which i compensate well) and I still hike. I snowshoe. I am more limited by my back issues than my AN.

This is super encouraging, I really appreciate the perspective.

We are more impatient then the system. I learned this when my young son was diagnosed with cancer.  I wanted to do something the next minute, it took a little time.  I had to remind me of this event as I went through my decision journey.  This time is stressful but the tumor is slow growing so we have time on our side.

I put together my information in what I call a decision matrix. I worked full time on this several years ago.  If you would like to see this let me know and email me at Dan4att@gmail.com. Keep on moving forward.

This has definitely been hard for me to remember, but hearing others tell me to be patient and time is not a super big concern is helpful. I can read that on the internet and know it in my head, but feel something completely different. And hearing from others is making a big difference, so thank you! And I may take you up on your decision matrix! Thanks

I know that risk is extremely low, but in my mind so was getting the tumor in the first place and I didn't beat those odds. 

I keep thinking this same thing about various potential outcomes lol!
Also, thank you for sharing your experience, I appreciate it, and congratulations on the Turkey Trot! That's amazing, and very encouraging!

I waited a few months for surgery and during that time, I tried to focus on thinking positive and getting mentally and physically ready for surgery. It helped. I'm not diminishing any feelings (shock, concern, fear), as I had all those, but just know you can keep moving forward and it gets easier when you have a treatment plan and expert interpretation by expert MDs.
 

Thank you for the advice! Like I've already said in this post, hearing from others has been massively helpful in grounding me back in a little bit of reality, and I  very much appreciate it! I filled out the information for the Free Patient Kit, so that should be coming!

[ESH]

Glad we could be of some help.

[Mark F.]

Thank you, before my surgery I had set as my recovery goal just to be able to finish the Turkey Trot.  When I saw how quickly I was recovering my goal switched from just finishing to being able to actually run the whole thing.  Then when I was running the full distance in practice and saw how well I was doing since my balance issued were resolved, I made setting a personal best as my goal.  I feel like it's important to set goals for yourself, don't make them too hard or you get discouraged, you can always adjust your goal like I did if it looks like your original one will be too easy to achieve.  Part of the reason for my increased speed is that I'm not having balance issues, and part of it is the fact that I am about 15 pounds lighter than before.  I wouldn't suggest surgery as a weight loss program though, lol.  I am glad that you found this site and that we are able to ease some of your concerns.  If you do go the surgical route and you have any questions about Hopkins just ask.  Also remember, the doctors have to tell you what the worst case scenarios are, try not to get freaked out about that.  I know that's easier said than done