Translab on October 17th NYU

[debraclark]

Hi Millie, Don't get discouraged with the Wonkey Headedness I still get it at times but more so when the weather is changing. All I keep dealing with mostly is head pain, headaches, neck pain. Fun and like you said with the holidays you want to be your old self again. I know the feeling. I just had my MRI (baseline) done yesterday in Phila, afterwards I stopped at my surgeons office and spoke to the nurse which spoke to him. They gave me scripts for pain meds and steroids. They are gonna call me on Monday to see how making out, if not better he wants to see me sooner than my January appointment. Thank God for my husband too, takes off work and drives me to all my appointments etc. I did drive to my therapy appointment for the first time tuesday only 5 mins away. It was ok but I still feel nervous about it as of yet. And the eye is still a bother will see if the steroids help again with that too. Last time I took them it made a great difference in my facial. Well, stay positive and enjoy your christmas and New Year. We have alot to be thankful for with our surgeries even if the recovery is a little difficult at times. When I get down and depressed I take some time and just think back to all I have been thru and how much I have accomplished in my recovery and then I feel better about myself. Take care of yourself and keep the faith. Prayers have made all the difference for me. =)

[millie]

Thank you ladies, for your support. Your words mean so much to me always. And let us remember the innocents of Connecticut in our prayers.

[millie]

Just an update...
Still not driving.  Seated, I feel fine.  However being SSD as a result of the trans-lab, as well as the fullheaded feeling, are bothersome enogh to make me feel cautious.
My eye is also needing the Refresh gel and ointment at night.
I feel like I have reached a stalemate in my progress-family says my face is a lot better-and it does look better-but my left eye is not blinking in time with my right, and I am missing my hearing.  Sometimes I have ear-ringing, and sometimes, it is worse than others.  I definitely feel very different from one year ago.
Trying to be patient but am getting a little frayed.
Mil

[millie]

Debra thank you for your advice about the fullheadedness.  Also, I think you are right about feeling less wonky when sitting down.  I just hesitate to drive when I can't hear out of the left ear and my concentration isn't up to it yet.  I think.

[millie]

A short post in case any one is following a trans-lab surgery....I sa my ENT January 7 and he said my facial nerve is coming along.  Sent me to a therapist for facial nerve therapy but therapist said the nerve has to heal in its own time...no exercises given, just something to do with my fingers if I get pain or twitching.
I see an audiologist next week for discussion of hearing devices.  My head still feels full on the left side.  The doctor said that may be the hearing loss giving me that sensation. 
Interestingly enough, the same day I made the appointment to go into NYC to the audiologist connected to NYU I received an advertisement from a local audiologist regarding the Soundbite I am going 70 miles west to try.  I wonder if I might do the Soundbite out here?  I must e mail the doctor.

No headaches.  Facial droop much better.  Left eye does tear still...people who have not seen me in a month say I look much better.

Grateful.



Mil

[Glenda]

Hi Mil,
I had wondered how you were doing.  I too still have the fullness and I also am SSD, I have loud roaring tinnitus in that ear and gets worse if I am in noise or tired.  I have driven once last week and then held off because I almost felt sick looking both ways when pulling out in the road.  I have been moving my head alot to try to relieve that sensation and am better so I think I may try again tomorrow.  I'm not ready for an interstate but I think I will be ok on a standard road. 
I am also looking at getting the soundbite but the only thing that troubles me is I'm not sure if insurance covers it.  You can go to their website and get some info on the product.  I also have talked to a lady that has one and she loves it but her insurance has not paid.  I really cannot afford it if it is not covered.  Please let me know what you find out.
Like you, it is a big adjustment to losing hearing and the fullness and roar of tinnitus.  I go back to the Dr on Jan 31st and I am so scared of going back to work.  My job is very stressful and I'm afraid that will make the roaring worse and I almost have panic attacks when I'm in alot of noise and the roaring starts but I'm hoping that is going to get better.  Others have done it so I can too....
I am also having a really bad taste on that side of my mouth, it has gotten worse in the last week.  It is so bad it is hard for me to go to sleep at night, seems worse at night or maybe it's just because I am still and notice it more.  Have you had that sensation?
Good luck to you!  I hope you get to feeling better soon and please let me know what you find out about the soundbite.

Glenda

[millie]

I'm on it on the Soundbite-Glenda-are you walking?  TRy walking more. I am trying to walk this out of my head. I know it is cold.
Last night I emailed the docotr and as usual he was so prompt in answering I was amazed.  He said the fullheadedness should get better and better. I too have that funny taste on the left side of my mouth.  The doctor said it is because the facial nerve runs alongside whatever nerves transmit the taste sensation.  I think it gets better.
I also think the doctor said we may have three year grace period to pay for Soundbite-not sure.  Am doing an errand today but will get on this Monday. I am thinking monthly payments are worth it-and maybe Medicare and NY Empire Blue Cross Shield will pay something- after all, don't we need this to be better drivers?
Have a good positive day.  Your friend Mil

[Sam-NewZealand]

Hi millie,

Hang in there! ... i' reading but until after surgery and i know what recovery i'm facing my advice is thin xxx

thoughts and healing vibes to you

Sam

[millie]

Healing vibes and positive thoughts and prayers, always!
Mil

[LakeErie]

Glenda and Millie, regarding the tongue/taste problem, I had  a bitter and metallic taste post-surgery. It persisted for a year ( a year was Oct 2012 ) and then started to get better. Now at 15 months the taste is practically gone. My tongue remains numb on the AN side and at times feels burned, but it is real improvement.

[Glenda]

Thanks LakeErie for the input on the taste.  It is metallic and really bad....it was not that bad right after surgery but is terrible now.  I was hoping it would go away soon but at least there is hope that it will go away.

Hi Mil, I walk every day, I am in SC so it has actually been quite warm and springlike for the last week.  We had temps in the 70's and 80's.  It has now cooled down to the 50's but is still not bad.  Therapy has me walking and turning my head and it has really helped.  I did drive into town yesterday and it was fine.  I did notice I drove slower than I usually do but I think that I was just nervous.  The hearing doesn't bother me that bad with the driving but I don't play the radio like before, even when my husband drives we have been leaving the radio off so I can hear him.  I took a neighbor with me yesterday so we left it off too.  The dizziness is getting much better, it is still there but so much better.  I hope in a few weeks it will be gone.  I hope you continue to do well!  I will be watching your posts to see if you end up getting the soundbite 

Your friend Glenda

[debraclark]

HI Millie, I know I have not been on here in a bit, I am on the facebook page for Acoustic Neuomas more than I am on here. I quickly looked at the posts since the last time I wrote. Glad to hear  your facial is doing better. My face looks fine but my eye is still dry does not tear and my nose and mouth also. I do not have that bitter taste thing going on but I lose my voice at times because of the dryness need to have gum, cough drops or water handy. Your wonki headness is going to get better and you are right about walking it is very important for many reasons and does help us in our recoveries. I did find out something about why I may be having a lot of probs with headaches and head pain. I have an atrophied neck muscle on the surgery side and now I am getting therapy twice a week for that. If I sneeze, cough or accidently sleep on that side I get a horrible headache. I have been back to my surgeon and he said my baseline MRI looks good and not to get discouraged because I am still early in recovery, especially because of the length of surgery and size of tumor. Don't you be discouraged either. They asked me do I feel better now than I did a month ago and of course I said yes except for the headaches. So there is progress just takes time. I did start driving couple weeks ago and that is getting better. I may be going back to work in March that is tentative at the moment. I have not gotten any hearing aid, I got the papers to review on different ones but the insurance sure does not pay for alot? Sometimes the tinnitus is bad but you almost get used to it, I usually run a small fan at night for background noise and it helps. I only notice the tinnitus really bad when it is too quiet. Anyway you take care of yourself and keep thinking positive. Debbie

[millie]

Thanks, Lake and Debra! And Glenda, just today I thought if I drove, I would not have the radio on any more.  Better for concentration.  A friend reminded me that when our windows are closed, we can't hear that much outside the car anyway.
Tomorrow I see the audiologist  in NYC and will report back here.  It is very cold out-no walking today!

[millie]

Deb- you will be happy to read the audiologist told me not to be afraid to frive...lots of people with impaired hearing are driving and doing just fine. 
As for the hearing device-  it looks like we have a choice between phonak cross, Soundbite and Baha.
None are really covered by insurance.
1.  Soundbite.   You get an audiologist  who deals in Soundbite and they set in motion a meeting with a dentist who takes measurements. These get sent to California whre your device is made.  (I think.)  You get the device in a couple months.  The folks that work for Soundbite will file appeals to your insurance company for you for three years.  They consider Soundbite a medical device.  Apparently, insurance companies judge each case differently.   As a Soundbite buyer, you take your chances (it seems to me) for three years, then you find out what you owe, then you pay.  If you need to have a payment system, they work it out for you.  (This is my understanding.)
I do not know if this means you can wear this for three years without a payment.  It seems to cost about nine thousand dollars.
2.  BAHA.  The audiologist said since I just had translab, I probably do not want another head surgery.  You cannot test BAHA first either.  You get the little abutment implanted and when it heals, and the bone adheres to it, you get the sound device to snap on it.  I think it costs what Soundbite costs.   I think you petition insurance companies yourself.
3.  Phonak Cross is about three thousand dollars and uses the Blue tooth system.  (I do not know anything about Bluetooth.)  You can't seem to try one out before you buy it either.
So for now, I am undecided and still thinking.    Ironically, I received a letter from a local audiologist advertising a free coffee hour Soundbite information session.  I think I will go!
Mil

[millie]

3.  I forgot to write that the NYC audiologist said if one does not like the Phonak Cross after a month, you can return it and get about 80 per cent of your money back.