Just Diagnosed

[elauber]

I am a newly diagnosed AN patient - left side 6mm AN with dizziness issues.  I had tinnitus for many years but in May started experiencing dizziness almost constantly.  I went for some tests and my doc suggested it could be a AN - he was correct - unfortunately.  I am now researching treatments, doctor's and facilities.  I have seen Dr Bigelow at the University of Pennsylvania who suggested a balance test (scheduled next month) and a follow up MRI in January.  He did give me a prescription for Prednisone to try and help with the dizziness but that really didn't do anything for me.  I am seeing Dr Charles Della Santina at Hopkins on Thursday plus awaiting an appointment to be scheduled at Jefferson (in Philly).  I am also sending a copy of my MRI to House and get their opinion.  I don't know if my insurance covers House though, so that may not be an option for me in the long run. 

If anyone has any thoughts about any of these doctors or hospitals, I would love to hear them.  I am pretty scared about the facial nerve and hearing loss - more the facial nerve though to be honest.  Any thoughts on post op recovery woud be welcome also.   I am not afraid of hard work and plan on keeping up my workout schedule going into this surgery just to make sure I'm the healthiest I can be before getting knocked on my behind! I'm hoping that helps....who knows though.  From reading what I have so far, it sounds like a bit of a crap-shoot as far as the recovery process.

I appreciate reading the good and bad of everyone's story.  I had never even heard of this kind of thing before so all the information here helps so much.
Thank you,

[jaylogs]

Hi Ellen!! Sorry that you had to join our little club, but you've found yourself a great place for good info and all around support as you continue your journey.    Sounds like you are doing the right things, getting different opinions.  You'll find out, most likely, that this will be the worst part of the whole process. At least it was for me, deciding what to do.  But as it has been said a lot here on this forum, when you make your decision and it feels good, then it was the right decision and don't second guess yourself.  Your post deserved to be its own topic, so I split it off from under that one post you put under.  People will undoubtedly chime in with answers to your questions.  Good luck and let us know how it goes!
Jay

[Petrone]

Hello E,

Sorry about your recent AN diagnosis, but it sounds like you are remaining very calm as you go though your due diligence. Calm is good. Your determination to continue exercising regularly will also serve you well.  Very well, in fact. 

My only suggestion is that you consider all THREE treatment options. In other words, in addition to surgery and radiation, Watch and Wait may be a completely viable option, especially for a smaller tumor.  Any doctor who does not make that crystal clear to you should be fired (just my two cents).  After my 1.4 cm tumor was diagnosed, I was in W&W for almost 3 years before deciding on GK when my tumor grew to 1.8 cm.  Check out the W&W brigade posts and you'll learn that others have been in W&W for much longer.   

My humble suggestion is that you give yourself some time to adjust emotionally to your diagnosis before making any decisions.  Surgery and radiation are both serious procedures and both can result in serious side effects. There may be no need to rush into treatment for a tumor your size. You've probably lived with your AN for years without even knowing it is there.  Now that you know it's there, you can probably continue living the same life you've known, possibly with a few minor adjustments.

I wish you all the best,
Petrone       

[Jim J.]

Hi Ellen,
I just had surgery to remove a 1.6cm. tumor on Aug. 28th. I was diagnosed 14 months prior to that. There was two reasons I waited,I had to wait 5 months until open enrollment with my employer to change policies to be covered out of state and also I wanted to take time to research my option. I never considered radiation so it came down to w+w or surgery. I have good hearing in my A.N. ear so after a year and reading on the forum how people would just suddenly lose their hearing I decided to have Middle fossa done at house clinic by Friedman and Schwartz. I feel like I made a good decision. Short term recovery went better than expected. Long term? I think it's too early to tell, I still feel dizzy and tire out during the day around 2:00. I'm hoping that will get better with time. The surgery went well, they said they got all the tumor and my hearing remained the same with no facial nerve damage. My taste buds were also effected and made food taste a little off but that seems to be getting better. I think your doing the right thing staying in good shape, it will definitely effect your recovery if you decide on surgery. I'm only in decent shape and I was eating solid food in I.C.U. and out of the hospital on the 4th. day. I returned to work after two and a half weeks, but that was because of boredom.  This Wed. will be 4 weeks post surgery and I still don't feel like I'm quite back to normal, it's actually kind of strange, but I think one reason is because I was off my routine for so long. 
Hang in there and good luck going forward with this. Take your time and make the decision that's right for you, no one else can make it for you.

Jim

[elauber]

Thank you all for your responses!  I just got the information packet last night from the ANA and read through that.  All 3 courses of action scare me to be honest.  But one of the reasons I think this will have to be taken care of sooner than I had originally anticipated is because of the dizziness.  I don't want to feel this way anymore and have my activities compromised by whether or not I'm having a 'good' day.  Also the sudden onset of some of these symptoms that I have read about is a bit scary. 
Currently I think you can consider me in 'Watch & Wait" status since I am scheduled for an MRI in January with follow up at Penn.  I did get a phone call from Jefferson Hospital in Philly this morning and I have an appt with them in a couple of weeks.
I really wish House was a viable option for me.  I am going to contact my insurance company today about that and get a definitive answer. 
I wonder how much the dizziness would resolve after surgery or will that always be a problem?  I suppose it's different for everyone.  That's one of the things I find so interesting about this problem - there really isn't any consistent, predictable behavior for the tumor or one's symptons or recovery.

Again, any info on any of the facilities or doctor's I mentioned would be appreciated. I will see Dr Andrews at Jefferson.

Thanks again - I appreciate the time involved in responding to my message!

[arizonajack]

For a small tumor you have lots of options. You'll just have to do your research and pick what's best for you.

Two questions for you to examine.

1 - What, exactly, do you mean by "dizziness"? Dizziness and balance are two different things in spite of people using the words interchangeably. In the AN world it's important to make the distinction.

2 - How's your hearing? Have you experienced any loss of hearing on the AN side? If yes, depending on just how much hearing you've lost and how fast the deficit is progressing, then there is going to be some urgency in getting the appropriate treatment.

Although I have a small AN, my right side hearing was 90% gone by the time I was diagnosed and was 100% gone 6 months later when I had my second MRI. Since the hearing was gone (never to return) I opted for Gamma Knife.

I also had balance issues (not dizziness) that started improving a little even before Gamma Knife and have continued to improve since then.

Study everything you can get your hands on. Keep in mind that doctors often recommend their own specialty. House, for example, always seems to recommend open-head surgery because that's what they do there. Others recommend radiation because they are affiliated with a facility that specializes in radiation. Look for medical teams that routinely do radiation and surgery because they will be more inclined to guide you to a path based on your own needs.

[elauber]

Hi ArizonaJack - Thank you for your response.  I have normal hearing in both ears.   The audiologist said there was some slight loss of higher register sounds in the left but not anything sginificant.
I do have tinnitus mainly in the left ear but it really only bothers me when it's really quiet - like at night.  I use an air purifier or fan to produce white noise, then it doesn't annoy me as much.  The dizziness is not as much balance as 'swimmy head' with small bouts of vertigo.  Just like the world and I are moving at different paces...kind of.  It's hard to explain but maybe people here will understand better than others!  I have noticed that on a 'dizzy' day when trying to focus my eyes on an object, it's difficult and as if my eyes are jumping a little. I have read that this is another symptom and when I noticed it prior to diagnosis I realized there was something more going on than just feeling a little funky.

I am trying to visit as many of the big hospitals in my area that I can in order to get full information.  I will admit I was not fully prepared for my first visit to University of PA and didn't ask all the questions I should have.  I know now I will be better at my appointment this Thursday at Hopkins, mostly due to information obtained from this site.

Thank you for your advice!

[arizonajack]

Hi ArizonaJack - Thank you for your response.  I have normal hearing in both ears.   The audiologist said there was some slight loss of higher register sounds in the left but not anything significant.

I don't mean to scare you (well, maybe I do) but I suggest you monitor your hearing with frequent audiograms, like every two months. ANs are insidious with what they do to hearing and it doesn't take very long.

I do have tinnitus mainly in the left ear but it really only bothers me when it's really quiet - like at night.  I use an air purifier or fan to produce white noise, then it doesn't annoy me as much.

My tinnitus on the AN side started Dec 2011. For a while I was hearing wind chimes playing Silent Night. Strange. Later on the sounds changed a few times but then the tinnitus stopped in Oct 2012 at about the same time as my hearing disappeared. In the time since I had my GK I occasionally get some very faint continuous sounds that are almost imperceptible.

The dizziness is not as much balance as 'swimmy head' with small bouts of vertigo.  Just like the world and I are moving at different paces...kind of.  It's hard to explain but maybe people here will understand better than others!  I have noticed that on a 'dizzy' day when trying to focus my eyes on an object, it's difficult and as if my eyes are jumping a little.

That's different from my balance issue. Mine were a lurching sensation like what you feel when you are walking on a boat. It only occurred when I was up and about. Didn't happen when I was sitting or driving. The lurching sensation was pretty much gone even before my GK and, while I'm not 100%, my balance has gotten a lot better this year. I did have some vestibular therapy before and after GK and that helped. I still do some of the more challenging exercises at home.