Translab on October 17th NYU

[Sam-NewZealand]

oh i agree life sure is different as a postie xx

[mandy721]

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

June 8. 

[millie]

Hello all...

Just an update...I have not been posting as my mom passed away June 29th when her cancer returned aggressively earlier that month.  I'm trying to deal with the loss and have been reflecting a lot.
In August, I had Botox injections to loosen my paresis side with a Dr. White in the city...I cannot tell if they have helped me or not but they were three weeks ago...I must confess I have not been doing my facial exercises regularly(my brain has been a bit scattered and not due to the AN) and have been a bit depressed because my left side still feels stiff around the cheekbone and the eye. I look pretty good with a little lopsidedness when I smile, and my "bad" eye seems to squint during certain expressions, but I need to do my exercises more, I think.  I have my MRI IAC with and without contrast tomorrow to see if the tumor is behaving and gone.  Then I see Dr. Roland on October 17th, a year to the day of the surgery.  I report to Dr. white on the 9th.  Iam very impressed with these two wonderful men. I wonder what Dr. Golfinos will say when I see him-it will be one year after the surgery, and it will be my first visit with him as I did not have to follow up with both, and so I chose Dr. Roland.  But now it is time to see him too.  I think my tumor was a little challenging as it was a sticky tumor and a little bigger than they thought.  I have yet to download my records from NYU which will be interesting to read.
On another note, a regular checkup revealed my bad cholesterol is very high!  Now that is a problem I NEVER had-so I need more blood work Wednesday.  I hope it's just all the ice cream and cake and comfort foods I have been cramming in there to try to fill the hollow
space. Another thing I need to address is the BAHA...I think hearing better will make me feel more "with it" and even more balanced.  I can't tell where voices are calling from.
I was so happy to find Mark Ruffalo' presentation on the ANA site...his words were right on...and he looks great!  It is over eleven years for him!  As he said, we need patience, grace and gratitude.


Love and best wishes to all...Millie

[millie]

October 18, 2013

A quick update from Millie...

My one year MRI showed all tumor gone, no sign of tumor.  Dr. Golfinos was very pleased  said I looked very good and I've come a long way.  He says my tumor was 1.5 cm and yes, my hearing and balance nerve are gone on that side.  Then I saw Dr. Roland who also read the MRI the same way...I am very ahppy the tumor is gone, but I did not expect it to come back.  It better not!
He also said I have gone from a 5or 6 to a 2 and is pleased with my progress and said I might try a bit more Botox as my upper cheek and eye tighten up a bit due to sinkenisis.
Counting blessings. Dr. Roland shoed me a patient who got an implant for the Baha after ten years, and I felt very excited to get to the next level.
Still get tired more easily and can fel a bit out there, but doing much more.
I am going to get a Baha I believe the date for the post is November 29th the day after Thanksgiving.
Must run!
Mil

[millie]

Been feeling a little tired and fell headed lately...noticed walking on uneven terrain and noisy places are getting tedious...is it just normal aging or the residuals after a big surgery...my left face still stiff and I see Dr. White today....will post soon.  Best wishes to all.  Millie

[millie]

Just a quick report on November 1st…
I read some of my posts from right after surgery and have decided to add:
1.  I am getting used to tinnitus although I cannot tell if I have it all the time.
2. I have decided to try yoga for improved balance in not just body, but spirit too.
3.  I am going to walk a little very day.  Vigorously.  No matter the distance.
4. I am going to do my facial exercises regularly to help myself more.
5.  I am improved much from last year although I  prior surgery I did not realize to what extent post-op issues might occur. I had read about some folks with remarkable quick recoveries. It was not as easy as I thought.   Each person is different and his or her outcome/journey will be too.
6.  It was still a benign tumor. Now it is gone.  Life is changed but there is much to be grateful for. It is what it is and will be what I make of it.

God bless us every one.
Mil

[deborahgordon]

I have read all your posts and want to thank you for taking the time to let us all know how your recovery went.  I know each is different but the not knowing is scary, and reading others journeys helps ease the panic I am starting to feel as my surgery date is approaching fast.  I have read some remarkable surgery times and recovery times.  I am going to plan on being somewhere in the middle so I will only be a little let down if I am slower and very elated if I heal quicker

[millie]

Hello everyone-Happy Thanksgiving!
Just a quick update.
Spent the week cleaning and cooking for the four or five glorious hours we share with family on Thanksgiving.  It was lovely and exhausting.
Next day, went to NYU for the BAHA implant.  I had last minute heebie jeebies.  However, everyone at the hospital was so compassionate and kind, I soon started to feel stronger.
The anesthesia was different from the big surgery anesthesia; in fact, it was a bit of an adventure.  I could hear Dr. Roland shaving my hair in just a little spot, and I could hear him speaking to another doctor about procedure and I could hear drilling….like I was watching T.V.  then I think I fell asleep.  Then I woke up at the end of the procedure.  I was in recovery for two hours and went home.
That's all I remember.  Now I have Tylenol for pain  (none just a little sore) and an antibiotic.  I must confess, I have been a lazy couch potato for two days watching movies…granddaughter came to visit and really made it Sunday...-will try to walk outside tomorrow.
For those who have had AN surgery, the BAHA implant is so very,very much different and easier…on a scale of 1 to 10 it is a .25.   Don't hold me to it.  Everyone is different.  However, be brave and try to relax.
In ten days, I am to see Dr. Roland.  I'm on my way!
Blessings, Mil

[Jim Scott]

Millie ~

Thanks for the BAHA update and congratulations on your implant! 

We appreciate your account of the implant procedure that will help assure future BAHA recipients that the procedure is relatively easy. 

Jim

[millie]

Healed very nicely…just a little itchy…doc says I can get my hair highlighted…I think I will hold off on that…am kind of proud of the little snap on my skull. Bionic woman! Although you really can't see it with the way your hair falls. 

[millie]

Still have that tightness in my face around the eye and cheekbone.  I need to connect to the Jackie Diehls webinar but am having some trouble.  I see the plastic surgeon early January to discuss progress.
Best wishes to all. Mil

[millie]

Got the BAHAlast week!  It is a help…will post  more later…it's not the same as haring but it is an enhancement!  Amazing.