Confused and stuck

[newmommyLA]

Hey Amye,

I think we spoke on the phone last fall when I was newly diagnosed and rushed into my surgery.  I also had a small tumor, but I was so freaked out by having a tumor in my head that I scheduled surgery as soon as I could get it.  There were a number of success stories that made me feel confident about going under the knife and all of the percentages quoted to me were greatly in my favor.  That said, I did have a few unfavorable outcomes post surgery that I was not prepared for.  You probably followed my story since we had spoken on the phone so you know about my hearing loss and severe tinnitus.  I'm not going to lie to you, 5 months post op, it is still very hard for me to get used to this.  The SSD thing can be very disorienting and the tinnitus just plain sucks.  It sounds like you already have tinnitus so perhaps it wouldn't be so shocking to you after surgery.  Pre-surgery I had a barely audible ring on occasion that I could here and that was it.  I also had 100% hearing.  I know balance is a big concern of yours and I do feel like my balance is almost back to normal.  It was scary for about a month feeling the wonky head and for me, it was almost like the world around me seemed liquid and not solid.  It was like a bad trip.  But now, I am balancing baby stroller and crazy dog on my walks again with no problems.

I know you're scared and torn about what to do.  I don't blame you one bit.  I often wish I could go back and do something different hoping for a better outcome, but it could have also been much worse.  For the small tumors, especially at House, facial problems should be temporary.  Mine lasted about 4-6 weeks.  I still don't produce emotional tears in my AN eye, but otherwise, everyone thinks I look the same.

Please don't hesitate to PM me or call me again if you want.  I know how hard this is and I'll be thinking about you and following your progress.

Good luck and know that whatever happens, you're going to get through it!  As a fellow mommy with a little one, it's so scary, but they also keep you strong as they give you so much to fight for.

Big hugs,
Amy in Pasadena

[Shaoi]

Amye,

I am so happy to have found this post.

I am 31 years old. I was diagnosed with AN in September 2009. My tumor is also 4mm and has not grown in size after 2 MRIs within the past 6 months. Like you, I have a 4-year-old son to take care of. I worked as a nurse until October 2009 when I had to go on temporary disability because of my chronic dizziness and head pressure/fullness. I have not been back to work since. Honestly, I do not know what to do right now job-wise. I feel unsafe to take care of my patients given my balance problems; although, I only have the "rocking boat" sensation and not the "spinning room" vertigo. I can no longer tolerate long periods of driving. Do you have that problem, too? My head feels so heavy all the time. I also get these tingling sensations on my upper- and lower extremities, occasional twitchings on my face, easy fatigability, etc. Sometimes I get one-sided, throbbing headaches. Yes, very symptomatic for someone with such a small tumor. These symptoms have greatly interfered with my life. I totally understand what you are going through.

My neurotologist (Dr. Choe) suggested surgery. The neurosurgeons I consulted (Drs. Murali and Chen) said my tumor is too small and too risky to remove via surgery/radiation. Doctor Murali even said that my symptoms may not be related to my schwannoma.

Well, I need to go see Dr. Choe again soon to figure out what to do next. Meanwhile, I try to make the best of what I have. There are so many things I want to get done but my wonky head gets in the way most of the time.

I look forward to hearing from you again. Take care.


Sharon

[Vivian B.]

Hi Amye,

I am sorry your tumour is acting up. My symptoms actually got worse too. My tumour however, is bigger than yours. Both oncologists and surgeon could not guanrantee whether or not symptoms would improve or get worse after treatment. So they suggested, if it does not grow why touch it? I was also diagnosed in March 09, over one year now. I can't believe it. My Neurosurgeon actually said with these tumours it is the luck of the draw. I think that you have to go with your gut feeling. Initially I was considering surgery just to get this thing out, but after I heard the oncologists discuss the radiation procedure, I am opting for it. It's a very difficult decision but once you have thoroughly assessed both procedures in your mind, I think that you will make the right one. If you are wondering whether or not you should have any treatment at all I would suggest you get second opinions from both surgeons and radiation specialists. Removing or frying it does not necessarily mean the symtoms will go away. It's a lifestyle change to live with these things once you begin to have symptoms. A simple thing like running up the stairs has become an issue for me. I have to walk slowly and hold on to the rail. In a split second I can feel everything spinning. Does that mean that after radiation, I won't feel like that? Who know? It's a chance I am going to have to take. In my case, becasue the tumour is approx. 2.0 cm, treatment is inevitable and sooner than later. My next MRI is in May 2010? I question the same thing as you. If it did not grow, do I leave it? If it grows even 1/2 a cm, I am going for it. Too psychologically painful to keep on watching. Good Luck!

[Shaoi]

Amye,

I forgot to mention that my symptoms have worsened since diagnosis. I have a slight hearing loss on my AN side (left), tinnitus, and occasional nausea besides the ones I mentioned in my previous post.

By the way, there is a YouTube video of this man who underwent surgery for his 1cm AN. You might want to check it out.

Have a good day.

[Mickey]

Hi ladies! Having a daughter your ages and a young mom, I`m rooting for you all to have a favorable outcome in time. With my AN(12x06) and having some similar symptoms over time I steped into action. While changing my diet to the most healthy foods I could find (alot of blueberrys, stawberrys, spinach, fuits and veggies, good protien) along with all the supplements + exercise listed in my previous post in this section. I + my wife have seemed  to find over a period of time a big improvement as I stated. Just wanted to put this out there again to whatever your condition is and whatever your coices will be with hope of helping your condition. Please consider this alternative in the meantime. In Can`t hurt! Prayers are with you, Mickey

[Jenn15b]

I too am confused, but I suppose that is expected after first being diagnosed.  I am a young mother also, to an amazing 4 year old, on top of that I am a single mother.  Her Dad left us a year and a half ago.  I have sole custody of her but every now and then he will call or text message me threatening to take me back to court.  He has visitation in our divorce decree but he hasn't seen her at all.  I think he likes to threaten me to either get money or make me squirm.  My biggest fear is this tumor becoming so disabling of me and him remotely having a chance at getting her.  I doubt that it ever would happen but I am scared of even the chance.  My tumor is small, 3.2mm x 3.8mm, but I am having perceptions issure and vertigo symptoms.  Ideally I would like to get this thing out and never have to worry about it again.  I have read some stories where people have done radiation, then 5 years left opt for surgery.  It is a lot to take in, and not an easy choice especially when it effects so many people.  I do have an amazing support system, my family and an amazing man in my life.

[leapyrtwins]

Jenn -

I, too, am a divorced parent with sole physical/legal custody of my kids.

Don't worry about becoming too "disabled" from your AN to keep your custody arrangement as it currently is. 

Your ex may try to make an issue of it, but he doesn't have a leg to stand on.

I just sent you a PM.  Hope it helps.

Jan

[amye]

Thanks to all for the replies. Wow I'm amazed at how many of us have similar issues...makes me feel much less alone. This idea that our small tumors aren't causing our symptoms is ridiculous! I was told that at first, too, but now I believe that's nonsense. The true "experts" I've consulted have said nothing of the sort...they understand that even a small tumor can have a huge impact on this delicate area of the body. I recently met someone with a 2mm tumor who is having the same issues!

For those of you newly diagnosed and struggling with dizziness, I can't say enough about how much vestibular therapy has helped keep me going. It doesn't fix things, but it sure helps in the mean time. Sharon and Jenn, if you want to PM me I will be happy to share more information and details. We are on the same road (babies to care for, fighting the dizziness and perceptual problems) so maybe we can share information and support one another through this. The impact of this on my ability to be the mother I long to be has been the MOST painful part for me.

Amy, I have certainly followed your long and arduous journey and greatly value your input. Hugs back to you...

Mickey, your point is well received. I have been a vegetarian for years, eat low on the food chain, live a very clean life, get lots of exercise (more challenging now to do!). I have added some supplements and vitamins but otherwise I'm not sure what to do. 

So here's the latest in my crazy journey. I went today for a VNG (balance test) and augiogram (hearing test). Hearing is the same (very good still), but my balance loss has gone from 50% l(10 months ago) to only 15% now. I am SO confused. I thought the nerve was dying, and was actually hoping to see a steady decline -- which would indicate that either surgery or radiation might not be so hard for me to recover from. Obviously, I don't understand as much about all this as I thought. So back into limbo for me...anyone who can offer an explanation please help!

[Jenn15b]

I just spoke to Dr Fayad at HEI, apparently 99% of the time the tumor is located on the balance nerve, where as mine is located on my hearing nerve, if I elected surgery I would lose my hearing completely.  I go see the local doctor here next week and Dr. Fayad advised I should get a hearing test, VNG, and ABR.  He also asked that I send the results back to him.  He believes the tumor is also effecting the balance nerve which would explain my "episodes"  I feel really good about talking to Dr. Fayad, he explained things over the phone clearly and was very nice.  

Amye,

Have you done the ABR test, I am curious to know what your results were?  Also with all the tests you did, did you get the results back immediately and how long did the tests take?

[leapyrtwins]

It's difficult for an AN not to affect the hearing nerve as well as the facial nerve as well as the balance nerve.  They are all in the IAC - and it's hard to avoid them during surgery.

Balance nerves aren't too big a deal - in the scope of things; your body will learn to adapt.  The hearing nerve is very delicate and once it's destroyed, it's destroyed - ask your doc about options like the BAHA or the TransEar.  The facial nerve is actually pretty resilient and can regenerate itself.  It takes time, but it is possible.

Jan

[amye]

Jenn;

I had an ABR a few months ago and it was normal. I did receive immediate feedback about my other tests (both times). The audiogram is pretty quick but the others take a little time (about an hour?).

Hope this helps,
Amy

[Mickey]

Hi ayme! Nice to see the improvement. Nice to see your healthy lifestyle. Please incorporate those other supplements into the mix which you may not have in there like bee honey propolis + pollen, along with 800 mcg b6, shark cartilige, phasphatidyl serine, ginko, capsicum, omega, plenty of blueberrys strawberrys spinach. To me these are the most valuable + whatever else your taking (multiple vitimin and minerals for woman etc.).  Hey, it looks like you may have time to go with this while doing your research on whatever your decision, especially with your condition improving. Wishing you the best, Mickey