Translab on October 17th NYU

[millie]

Just a post to say I have returned from a 9 day stay in Aruba, and the warm weather was a delight.  I think it must help healing and balance  because it is so much easier to be out walking when it is a breezy 85 or 88 degrees. I tried  floating and swimming  in the sea or pool to aid balance.  I am hoping the Vitamin D from the sun helps our nerves and veins grow back more quickly too.
My head was fine on the flight.  I still needed my drops in the day and the gel at night. The facial muscles on the operated side are not as strong as my good side, but they are much improved over the four months.  Still need the Refresh Liquigel by day and the ointment by night.  Taste still off as the left side of my tongue feels like it has been burned or something-I don't enjoy taste as much.  However I am getting better at going into stores and handling all the activity and the lights...Going to an eye doctor Tuesday .   Still get tired and go to bed early
but hopeful things will continue to improve.
Miss my hearing in the left ear...even though I only had 40 percent before the surgery, it was definitely something.  Ah, well, I am  still lucky I guess.
Hang in everyone.   Mil

[millie]

Hi all...just an update...getting new glasses, but then, i was due for a pair before surgery and the eye doctor says my left (the a.n. side), eye seems in good shape...it is still bigger and rounder than my good eye but blinking is more in sync...face seems petty good...a little slant of my lip
in the other direction, when i get up in the morning but then i massage it a little like the therapist showed me and it seems to straighten out...actually, my an side looks a little like a face lift, and that's not so bad!
Tonight I drove home in the dark on pretty busy roads-was't planning on that but that is how things turned out-and I did just fine. Dare I say that the weight of the spirit sitting on my head seems lighter too, or am I getting used to the new normal...feeling pretty decent..
Best wishes to all...hope and strength...Mil

[Glenda]

Mil!!

Great news!! So jealous of your trip to Aruba ;-)  I know you had a wonderful time!!  I am so glad you are feeling better.  We are still healing at about the same rate.  I feel the same as you and so glad we are getting better and "adjusting" to the new us  .

Glenda

[millie]

Hi Glenda-
I am glad to read you are progressing too-time is our friend, we have read on this site.  My head still feels like there is pressure in/on it which seems to affect my balance perception, if that makes any sense...also I am aware of a tightness in my cheek on the surgery side...my husband cannot wait for me to address the hearing device issue seriously...the eye doctor today gave me a script for new glasses and says my vision is actually better than it was but keep using those drops...affected eye swings between lots of tearing and dry eye...I see the ENT next week.   I wish you continued good progress.  Mil

[lkrk]

Hello Millie,
I want to thank you for keeping up on your recovery. I am heading to Mayo Clinic for my translab surgery on Wednesday March 13th.  I appreciated hearing about what recovery is like.  I am aware that everyone is different.  My tumor is now a medium sized tumor, I have lost about 70-80% of my hearing already.  I have had nonstop vertigo for the past 15 months. I am hopeful that the vertigo will lessen after surgery!  My neurosurgeon said that my brain is just not finding a new path for balance.  My balance therapist said that maybe my brain is over compensating.  My husband and I appreciated reading your blog and about the hearing options and insurance issues to the hearing devices. 

Lauren
Winthrop MN
Diagnosed 6/2011
12/12 AN 1.5 cm
Surgery scheduled 3/13/13  St Mary's Hospital Rochester MN

[It is what it is]

I wish you healing.  Congrats on soon being a postie! 

[millie]

Hello everyone-
I have not been keeping up with the computer lately.  A dear friend and colleague who battled cancer for eight years passed on last week after a downturn at Christmas ...  I am reminded of the gift life is and to make the most of each day.

Have had an upper respiratory thing going on and it makes me very tired. Took a bunch of Zicam and Mucinex Max.(my own prescription) I see Doctor Roland tomorrow Monday as he had a meeting last Thursday that necessitated a time change.  My balance is good but I still feel  something  sitting .on my head.  No pain or headaches.  Eye seem to tear a lot but maybe that is the weather or age?  My visit to the eye doctor showed nothing unusual-I am supposed to get new glasses today...I have new earmuffs (headphones wireless by Sennheiser) and they really make listening to T.V. much easier.  They are about $120 on Amazon and recommended by a friend who flew helicopters in Viet Nam.
Hoping to become inspired to get more with it soon.
Hugs and prayers to all ...Mil

[millie]

Hi everyone-
Saw Doctor R today and he said my face is very actively coming back... I was glad to hear this as sometimes the an side tilts up a bit now but it's all good. The doctor  advised facial therapy for more specific exercises  as I have movement in all the important areas.. My eye tears and I still use drops ...my new glasses are quite good except for the blurriness caused by tearing so I don't wear the glasses as much, a problem many have posted...however the doctor said it should get better, including the taste sensation, as well as head fullness. 
We talked about hearing devices again-Baha or Soundbite...
I  felt  more positive  after the visit.  Encouraged.   Grateful and blessed.
Best wishes to all of you on this journey.Mil

[Jim Scott]

Hi, Millie ~

It's heartening to learn that your long-term recovery is progressing in the right direction.  Thanks for communicating your good news to those who can be encouraged by it. 

Jim

[mandy721]

Hi Millie,
What a great report from Dr. Roland, and I am glad that you are feeling more positive about your recovery.  At almost six months out, you have made terrific progress, and there is more to come. I think it is harder for you to see the changes in your face since you see it all the time and are acutely aware of the bits that don't work the way they did pre-surgery.  You looked great at the last meeting. That was  more than six weeks ago, so by now you are looking even more beautiful 
Miranda

[millie]

Miranda, you are too kind!  However thanks for making me smile.
Thanks also Jim for your kind words-I have been waiting for a post from you!  Yay!
As to my progress this week...today is March 29th and I have been thinking that the spirit that sat on the left side of my head has gotten lighter!  Could this be so or is it my imagination?  Or that I am getting used to whatever? Sometimes I have to stop and say, wait a minute-is that heavy head feeling gone?  I feel pretty good! Not perfect but pretty acceptable.
 This week, I am going to a nearby ENT office tosample  a hearing device that will sort of replicate the Soundbite-the audiologist said she worked with Dr. Roland  as an intern so that's good news.  Her office is a lot closer than NYC so I'll give it a whirl.
I  bought new sneaks and have been trying to do a mile a day now that the weather is nicer, and I did some  raking and weeding easily-bought  flats  of pansies for planting outdoors and tomorrow plan on cleaning for a while for a small Easter gathering. 
I also seem to be enjoying  stores a bit more- the lights  and sights  are not as overwhelming or tiring at all.  I must admit I do things at my own speed and I like to turn in by 9:00 P.M. but
if I had a good book I'd be reading more...
Hang in there post-ops...it will get better but it will take time.
Happy Easter and Happy Spring everyone! 

[Sam-NewZealand]

MILLIE!!

been thinking of you pleased to hear your progress xxx

[millie]

Hi-quick update...forgetting to use drops, and i think that means my eye is not needing them...I seem to be blinking on time with the other eye and I even wore eye makeup yesterday that stayed pretty put.
Still have a funny sensation about taste on the left side of my tongue..
More tolerant of shopping activity...
Facial therapy scheduled...tried a device that helped understand Sonitus and am waiting on their report regarding coverage...Medicare does not cover...
Life is different but getting better...Mil

[millie]

My apologies for not keeping up with the forum...lots of "stuff" going on, but a quick update.

#1.  For all having trans-lab surgery, it does get better.  Keep the faith.
#2.  I still have issues-my face can feel a little stiff on the an remoal side, and if I am tired or stressed, it seems to slip UP to mimic a facelift.  I will address this with the therapist on May 1-had to cancel my long awaited appointment due to a virus. However people say if they did not know me, they would never know I had surgery.
#3.  I do get more tired than I used by day's end but I am considering myself still recovering six months after surgery.
#4.  While my eyes are better, and my vision seems to have returned to normal, I still have a little dry eye but not using drops nearly as much.  I also think the problem is my new eyeglass script is off.
#5. Lots of people talking at once as in a dinner setting or a baby shower becomes very difficult and tiring. Lots or reading and computer time seems to make my face slip up.  I don't think alcohol is good for folks after this surgery...not sure why.

Does anyone know when the next meeting for the New York City group is?   I understand Dr. Roland is to speak.




Thank you.
Prayers.
Millie

[millie]

Just an update of activity-walked this morning and realized I need to be aware of my deficit hearing as I can't really tell when cars are in back of me-so if you are walking these lovely days,  stay to the side, choose quiet roads, and walk with a friend. I felt wonky here and there, but not bad.  I also did a lot of weeding and planting today.  Sometimes feel dizzy/ a little off, but enjoying gardening and having fun!  Anyone know when the next NYC meeting is? Thanks.  Mil