Perplexed and frightened newbie here.

[Marzipancat]

Hi all,

I have been looking at many of your postings and realize that you are a helpful and supportive group, so I want to introduce myself.

And to think that about a month ago, I - a creative, active and happy 51 year old woman - felt perfectly healthy!

My first symptom was a facial palsy that makes me unable to smile on the right side or raise my eyebrow. I also can't wink my right eye very well and am using eye drops throughout the day and taping my eye shut at night. Fun stuff! At first, I was diagnosed as having Bell's Palsy and I was on a prednisone regimen for about 11 days.

The hearing loss on my right side came shortly after that and sent me to have an MRI which revealed that I had a schwannoma a little over 1 cm in size which was causing me the trouble. The left one is very small and I can hear perfectly well on that side (In fact, I think it may be compensating for the severe loss in my right ear).

I am also very dizzy and off-balance and this is driving me crazy. Are there any exercises I can do to help with this? I tried meclezine and it was useless.

Luckily I live near Boston with its excellent MDs and research. A week ago I saw an otolaryngologist, Dr. McKenna, at the Mass. Eye and Ear Infirmary. He advices against surgery at this time and wants the palsy symptoms to improve even more before even considering it. He is also referring me to another oto specializing in facial palsies. I'll be seeing a neurosurgeon, Dr. Baker, at MGH come Dec. 12. Finally, I'll be connecting with Dr. Plotkin, who runs the NF clinic, as soon as I send him my MRI and info this week.

Last night I experienced a symptom I hadn't expected - I became extremely sick. I called my GP and she prescribed Ondansetron which has at least allowed me to eat and drink a little. But I'm dizzier than ever and had to take the day off from work. Being dehydrated from the vomiting probably didn't help.

My GP seems to be of the opinion that I should have the surgery soon, and now with these awful symptoms, I wonder if she may be right. However, I've also read that symptoms like dizziness can become worse after surgery. There is also the risk of facial paralysis.

Honestly, this has become a waking nightmare for me. I'm terrified of becoming deaf and being dizzy for the rest of my life. On the positive side, I think the palsy may be improving a little at least around the mouth. Dr. McKenna thought so too.

I do hope there is light at the end of this dark and frightening tunnel and appreciate any advice. 

My heart goes out to those of you who have small children and family members relying on you as you cope with NF2. I live alone and hope to reach out for help if need be. (I do have supportive friends and co-workers.) I guess reaching out is what I'm doing now.

Thanks for reading. God bless you all! 

[Susan A]

You are (we are) so lucky to be close to Boston and the excellent medical centers there! You got lucky getting to see Dr McKenna so quickly - I had 2 appointments scheduled with him, both of which got cancelled :-(

McKenna/Barker/Plotkin - you couldn't have a better list of doctors!  Listen to what they say about surgery, not your GP. They've probably seen more NF2 patients in the last year than your GP will see in her entire career. Dr Plotkin will be the one taking charge of your case now though as he's the NF2 guy. He told me I should cancel my January appointments with Dr DeVenecia @ MEEI (same office as McKenna) and Dr Martuza (chief of neurosurgery at MGH.) He will refer me back to Martuza if/when needed. I was very impressed by Plotkin - he took great care to explain everything to me very carefully. He persuaded me that it would be to my advantage to have my MRIs, hearing test and vision tests done in Boston from now on so that I can see people who've seen other NF2 patients and have all the test results entered directly into the MGH/MEEI computer system. His office staff are fantastic and got everything set up for me so I can get all the tests done in one day whereas if I had them done closer to home it would take 3 different appointments and probably involve more time off work. They were even nice enough to make sure the appointments don't start too early in the morning as I have about a 3 hour trip to get to Boston! He assured me that he will communicate as needed with my GP.

I don't have any words of advice about the dizziness as mine is very minor. I totally get what you mean about having felt quite healthy only a few weeks ago! Right after I was diagnosed (while I was on summer vacation) I went through a period of feeling exhausted all the time and had terrible headaches. Once I went back to work I realized that I was feeling quite a bit better - less time to brood I think! It's easy to work through my (now mostly mild) headaches though - it would be harder if I were feeling dizzy.

Did you see the posting about the free NF2 webinar this Wednesday evening? Plotkin is doing a presentation on the latest research on NF2 and will answer questions. I signed up for it - I figure that way I will have fewer questions for him at my next appointment and we can use the time more efficiently. I already know from my October appointment with him that I'm not eligible for any of the trials of meds because of my meningioma. I did let them take a blood sample for their research, and signed paperwork giving permission for them to take a sample of my tumor(s) if/when I eventually have surgery.

Let us know how things go for you!

Susan

[Marzipancat]

Thank you so much, Susan, for the thoughtful response. I just sent Dr. Plotkin the reports and the CD and signed up for the webinar too. I saw a posting about that webinar before - thanks for reminding me of it!

I know that having a plan of some kind in place will help immensely. Next week I'll also be seeing another otolaryngologist at MEEI, Tessa Hadlock, who specializes in facial palsies.

Now I better get something to eat!

Wishing you all the best,

Rebecka

[Chances3]

Hi Rebecka,

I'm so sorry to hear about all your health problems.  My tumor was causing me to have full vertigo spins, so I felt like I couldn't wait and had surgery 13 months ago.  I'm here in the NYC area, and yes you are lucky, like all the big urban centers, Boston has terrific doctors.
Meclizine made me very tired and groggy, I tried Xanax which help with the vertigo.  I have also heard that Zofran works too.  Try searching for antiverts and see what you come up with.  Members on this site have had all kinds of experiences, and I'm sure you will hear from many more.  Yes these tumors are very challenging, but the good news, it's not cancer and medicine has come a very long way in treating this.  You will hear from some of the more senior members of this forum, they have a lot of insight.  Stay strong, stay in touch and don't be afraid to ask as many questions as you feel the need to.

God Bless.

[Jim Scott]

Hi, Rebecka - and welcome ~

Your 'AN story' is similar to many; feeling fine, then becoming dizzy and losing unilateral hearing, then the MRI and the unwanted news that we have an acoustic neuroma (although at least the troublesome tumor is benign). Being NF2 is even more complicated - and who needs that? 

As Susan accurately stated, you are being treated by some of the very best doctors for AN patients in the northeast and, specifically NF2 patients, like you. I believe that you'll come through this quite well, even if it doesn't seem that way right now.  Many of us have been where you are, today, and vividly recall feeling overwhelmed and depressed.  We not only survived but many of us have triumphed.  As you noted, having a treatment plan in place will do wonders for your state of mind simply by giving you a very real sense of regaining control over the situation.  I will caution you that you'll need patience to help you through this event in your life but never forget these ANA website forums are here to educate, advise and, most of all, support you in your AN journey, from the valleys to the mountaintops.  I trust that you'll call on our knowledgeable, compassionate members as often as you feel it necessary.  I can assure you that we'll be here for you.   

Jim

[Marzipancat]

Thank you, Chances and Jim. It helps hearing from people who have been there.

Now it looks like I'm being scheduled for vestibular therapy which may be necessary considering how awful my balance and dizziness have become. Am getting a sturdier cane and a shower stool too.

One of my great joys in life is listening to mostly classical music. Now that I have lost most of the hearing in my right ear, radio music sounds tinny. Feeling very, very sad about that.

Now a coworker told me that the wife of another coworker is an audiologist. Hmmm ...

[Susan A]

Rebecka,
have you started the vestibular therapy yet? If so, has it helped at all?

Susan