Confused and stuck

[amye]

Hi Everyone;

I haven't posted in a long time, but have been on the forum periodically since I was diagnosed in March 09 with a 4mm AN deep in the IAC (laterally impacted, against my cochlea). I had a severe vertigo episode that led  to my diagnosis, and subsequently learned that I had some high frequency hearing loss (which I hadn't realized). A few months after diagnosis, I developed tinnitus as well.

I am 44 years old, very physically active, and otherwise healthy. I've never had any health issues in my life prior to this, and it has been a huge blow.

I have been in W&W for the past year for several reasons, not the least of which is that I had a 5 week-old baby when I was diagnosed, and wasn't ready to take on the risks of undergoing treatment. My baby is now over a year old, and I also have a 3 1/2 year-old daughter. I also work and run a small horse farm. I have tried my best to get on with my life and put my AN "aside" but it has been a struggle.

This year of W&W has been really challenging. I have had only one more severe bout of vertigo (about a month ago), but have had chronic dizziness, wonky-head stuff and vision problems due to chronic nystagmus. My hearing has remained stable but the tinnitus has become worse over time and really interferes with my life. I feel like my AN symptoms sorta run my life. I have been seeing a vestibular therapist and there are periods when I function very well, yet just when I think my life is back in some form of order I will have another period of dizziness or a big surge in my tinnitus and it's just impossible to ignore.

Strangest of all, I have had two MRIs since my diagnosis and the tumor has not grown. in fact, I have an MRI from Feb of 08 (when the tumor had been missed by the radiologist) showing the same size...so what I have is two years of no apparent growth. Yet I am symptomatic almost every day, and have really scaled my life down to be able to manage.   

I have been consulting with Dr. Brackmann at House as well as Dr. Chang at Stanford. Both are wonderful and have recommended treatment in spite of my small tumor size and apparent lack of growth. I am really scared of surgery, and my gut has been to do radiation. However, because of my dizziness I am worried about becoming worse and not being able to care for my children and continue working (which I now do part-time). I am just so tired of struggling!  I am stuck because I don't have confidence that treatment will make me better, and fear it may make things worse (possibly in ways I don't now have to deal with). Yet  the daily status quo of my life is not good either. Do I take a chance on treatment?

I am so grateful for this forum...would have been an even harder year without all of you!

Thanks,
Amy
     

[leapyrtwins]

Amy -

while watch & waiting is great for some, once your symptoms are hindering your daily life, in my opinion, it's time for treatment.

It sounds to me like radiation is the way you think you should go and I personally think that would be a great choice for you.  You should go with your gut.

Dr. Chang is an excellent doctor and you'd be in good hands with him.

Jan

[sues1953]

HI Amy,

Wow this all sounds so similar to my feelings.  I don't know what to say to you to make you feel better except your tumor is very small and your relatively young and healthy, you will more that likely fly through treatment and recovery.

I was diagnosed last December with a rather large tumor at age 56.  I too am very active and healthy but this thing has really taken a toll on me.  You have been dealing with this for allot longer that I have, it wears you down.  This forum has helped me soo much because I am a need to know everything type of person.  I was told my only choice was surgery and in a way I guess that is a blessing (one less decision).  I have had 3 opinions so far and another one coming up this Tuesday.  I will make my decision on which Dr. after this appt. and then I hope to have some relief from this nightmare, because I have done my homework and I can finally give it up.

My heart goes out to you Amy.  The indecision is murder.  I have very few symptoms with a large tumor, so kinda the opposite of you, I feel I may have more to deal with after the surgery and that really scares me.  Thank God my children are grown.  I did have major surgery (out of state a week away from home) when they were 5 & 8 and it was very difficult to leave them.

No growth for two years is hard to ignore but with all your symptoms your quality of life is already compromised.  I am no expert (and I didn't stay at a Holiday Inn last night  ) but I would get this thing taken care of and get on with my life.

Good Luck to you.  Please keep us updated.

Sue in Michigan

[GRACE1]

Amy,

I'm with Jan. 

Grace

[Mickey]

Hi amye! There is alot to consider in your situation.Your still quite young with symptoms that are making your life not what you want it to be. In comparison I`m 61 with symptoms which are very bareable (used to them) and also W+W and hoping to stay that way. My choice of treatment would probably differ if I was in my 40`s. We all know this is a personal decision which does take time to make. What I can honestly say though is that with the technology we have today the most hard part of your journey is going to be the choice of your treatment. While your W+W please stay on a very healthful routine with alot of supplements out there which actually may help our condition (has helped mine). Research, Research, whatever your choice you have a great future ahead of you. Best wishes, Mickey

[cindyj]

Amy...hugs...talk to you soon!

Cindy

[Cheryl R]

Amye,   Hate to say this but my own personal opinion is with having surgery.    Would your symptoms now just keep hanging on as the tumor would stay there past radiation due to it's location.  Hard choice for you and no guarantees with any treatment.       I do know that not all surgery gives you bad long term effects.     Some adjustments maybe but life can be back to ok past a surgery.   Been there with 4 surgeries for having NF2.               Good luck with this and we are thinking of you!
                                                               Cheryl R

[amye]

Thanks for all your responses. Cheryl, the concern you expressed is the one and only thing that has kept me from scheduling radiation. Here's the basic problem: What is causing my symptoms? It's certainly not a growing tumor. One doctor says its probably related to blood flow/circulation due to the mere presence of the tumor (which would indicate a surgical solution), while the other suggests that inflammation is the culprit (specifically, from proteins secreted by the tumor -- radiation would eventually "kill" the tumor and thus stop the inflammatory process). Without knowing the cause, or mechanism driving the symptoms, it's hard for me to know what to do. In both cases, I'm assuming risk, but the risks with surgery seem greater to me. However, surgery *may* give me the greatest relief by cutting that nerve. It's maddening going round in these circles, and I think it's wearing me down. Last MRI (last month), I found myself actually hoping for some change that would push me in some direction! I know that's nuts, but that's the truth of how I was thinking and feeling!   

[amye]

Mickey, what supplements are you referring to? I'm on a few, but just curious...

[tenai98]

Amy
I had surgery and it isnt all that bad..I'm pretty much bad to normal as the new me.  I have SSD and no balance left on AN side, but the right has compensated for that long before I was even dx.  I so at times walk a crooked line and am forever saying 'huh?' or 'say agan'...both treatments bare risks and both dont guarantee a perfect outcome...
JO

[Jim Scott]

Hi, Amy ~

I realize that I'm on the caboose end of this thread but I wanted to add my opinion (that coincides with Jan's) that if this small-but-problematically-located AN is negatively impacting your life, which seems to be the case, you should try to surmount your very natural fears and reservations and address it.  I suspect that surgery will give you the best outcome but that's the opinion of a non-physician and worth what you've paid for it.  Yes, AN surgery can be complex and carries definite risks but so does irradiation and frankly, you if you have to do something why not do what probably has the best chance of giving you permanent relief from your symptoms?   Well, this is just me spouting off but I hope you'll consider my suggestion. 

Just like all of the previous posters, I want you to get better and while AN surgery may well interrupt your life for awhile and some things will change, almost everything that may occur will eventually resolve or can be medically addressed and at your relatively young age, this experience will fade to a distant memory and you'll be free of the tumor and the symptoms it's causing as well as released from the tension of worrying if it's grown.  I hope you'll be able to reach a decision soon and I wish you better days ahead.

Jim   

[Mickey]

Amy, here is what both myself and wife have been doing going on two years now.To start a nice exercise routine with nice walks. Green tea has replaced coffee with moderation on alcohol. Good multivitimin, acidophilus, xtra ester C, xtra folic acid, lutien, glucosimine condroiten msm combo, omega 369, shark cartilidge, capiscum, ginko biloba, phasphidyl serine, Bee honey pollen + propilos, cq10, revesterol. Sounds like alot but really isn`t. Thats why I usually ask people to give me a call so I can explain more better. In any case my wife who has a tumor also has shrunk considerably while mine is stable and both feeling better. Just my story so far so good (alot of prayers included). I will be on the panel at New Jersey AN meeting Apr. 18 with my neuromonics machine. Wishing you the best, Mickey

[leapyrtwins]

Amy -

I wanted to clarify my "position".  In my earlier post I basically said you should have radiation because you said yourself that your "gut" was radiation.

I'm a strong believer in the "gut" - I followed it with both my choice of doctors and choice of treatment - and I think you should follow yours.

However, having had surgery, I'm not opposed to it at all.  Is it your best bet?  Hard to say.  It was my best bet and I had a good outcome, but only you can decide what is right for you.

Jan

[sgerrard]

Hi Amy,

On the bright side, you have a pretty small tumor, which tends to reduce the risks of either treatment. I would  think your chance of a facial nerve issue after surgery, for instance, was pretty small. The location right next to your cochlea makes it sound like hearing preservation may be difficult, though. I am curious if Dr. Brackmann is thinking trans-lab for surgery?

The balance nerve is a tough one to figure out. Tumbleweed had a good result recovering from balance issues after CK, but that doesn't always happen. Surgery is more certain about taking out the nerve on that side, letting you readjust and restore order.

You have two of the best doctors, so you will be getting the best with either treatment. If your symptoms are an ongoing problem, you probably need to pick one of them. The tinnitus is notorious for sticking around afterward, so don't get your hopes up too high on that score. It should at least level out, though, making it easier to get used to.

No one said life would be easy, they just said it would be worth it. Best wishes as you go forward.

Steve

[amye]

Thanks for all the responses...this is the BEST and most supportive community!

Steve, Dr. Brackmann is recommending mid fossa. He says that the location reduces my chances by a few percentage points, but he still thinks that's the best approach. However, it places my facial nerve at greater risk from what I understand (he minimizes this) and it also seems to me that those who come out of surgery SSD seem to have a pretty significant increase in their tinnitus. It's true that I also risk losing my hearing with radiation, especially because of the location issue. (I"m guessing that the location is also why my tinnitus is so loud  ).

I realize that there are lots of good surgical outcomes, and I appreciate those words of encouragement.  I have such tremendous respect for those of you who have undergone treatment of either type...it takes such courage! I think if I could get a good handle on what is actually causing the symptoms that would help me choose. If it's the mere presence of the tumor, then radiation is less likely to help. But if Steve Chang's theory is right...

Donnalynn, what type of symptoms were you having prior to surgery? Did they improve?

I'm having another audiogram as well as a VNG this week (had my last one almost a year ago), and maybe this will shed some light. 

Thanks again to all. You give me hope.