Translab on October 17th NYU

[millie]

From the neck down I am feeling well.  I was able to watch a little tv with basically one eye today-the one on the good side. First time I could focus to concentrate on the screen for a while.
I did shampoo today and I had been afraid but the nurse practitioner said it would be good to do and no problems there with baby shampoo.  Wish I could condition to get out the knots but I will stay away from incision area anyway. Does any one know about conditioning-I may need to to get the stitches out.
I think my vision must be a little off-but I am mostly preoccupied with the fullheadedness because that was why I had the surgery vs the radiaiton-I wanted the thing out that was filling my head with the feeling.  My doctors have been good about emailing me that I am experiencing nothing unusual.
As for dizziness I would say I would be walking more if my head didn't feel so full.  But tomorrow may be better.  Maybe I am getting better because I am getting antsy.
Drinking prune juice eating oatmeal fruit pastafagiole soup roast beef sandwiches no probs there.

Thank you everyone and that is my update for tonight.

[millie]

Today pretty much same as yesterday.  Worried about hurricane...supposed to get stittches out Monday.  Gnite all.  Millie

[millie]

Thank you to all you dear ones who encourage and strengthen with your words of wisdom and sharing.  Thanks for saying it does get better and the fullheadedness are normal.  I can wait.  Patience and time.  Stay positive.  Listening to you...Millie

[debraclark]

Hi Millie, just read your other posts. I have had that full headedness and you are right it does affect you when you are doing your walking but what I am finding out from my therapist is that the muscles that were stretched or cut in my neck and on my skull are causing it in addition to being in that position in surgery so long that is why they are concentrating not only on my balance but also working on my neck muscles. I have neck exercises to do at home too, it helps but ends up giving me headaches too. But the neck muscles give me headaches anyway. As for your incision I too was told to only use baby shampoo, no conditioner, my hair is not knotted now, was in the beginning but I miss using a conditioner. When I went and had my staples taken out I asked at the time if I could put anything on the incision and was told no just to keep it clean, so I still keep washing it and my hair with baby shampoo for now. I still have problems with my eye, still have some facial paralysis on my right side (where the tumor was) It has been slowly getting better, but I end up using alot of eyedrops and dribbling my food at times. But told that will get better with time. Just remember you will get better each and everyday, it is very important tho to walk several times a day to get your strength back and of course to avoid blood clots, so even if I feel lousy I still make myself do it. Prayers and thoughts go out to you, its going to be alright!

[Blags]

What kind of eye drops do people use - OTC or rx.

[millie]

Thank you DEbra for the advice on the fullheadedness-it is so frustrating.    Bless you folks on this forum!  No one mentioned neck exercises yet-but don't worry, I walk all around the house and I walked around it too today-neck down is easy and I am getting a little restless.   I cleaned out two kitchen drawers today.
Am using Refresh liquigel drops all day and the REfresh lacti lube cream/ointment at night.  This was given to me in the hospital, Blags.  Hope that helps.
Still have facial droop.  Have a good night, guys.
Mil

[Bobette]

Hey Mil,

You are in my thoughts and prayers.  You have been through a lot this past year.  May the Lord comfort you today.

Love, Bobette

[millie]

Thanks Bobette!  And you, too.
My update for today:
My body feels good.  I dare to say each day is better.
My head (left side) still feels numb although I think it lessens a teeny bit each day.  Feels full, which has got to be the stitches and stuff they did inside.
I am not missing my hearing (left side) so much maybe I had already adapted.  Using eye drops and gel too at night.  Sleeping better at night.  Physically more comfortable and strong.
Bracing for the hurricane.  We are high up 600' north of L.I. sound, but highly wooded.  If power goes out it is out for days.  Will not be going to NYC to get stitches out tomorrow.
Let's all pray to stay safe during the storm and that it is not as bad as they predict.
God bless you all.
Mil

[debraclark]

Blags, I use over the counter eye drops and at times eye gel, REFRESH is the name. I actually started using for my eye before surgery because it was dry and a little numb feeling. Afterwards I have been using it everyday for my right eye, sometimes in the begining post op I would use the gel at night. Sounds like I am using what Millie is using too. 

Millie and others in the bulleseye of Hurricane Sandy, be safe everyone, we are facing it here too in South Jersey. Faith in God will get us through this. 

[alabamajane]

Millie and debraclark,,

Just sending prayers and best wishes to all of you in the path of Hurricane Sandy ,, hoping you don't get as much damage as is predicted,,,,but it is a large, strong storm so heed advice for evacuations,, nothing to play around with,, take this time after preparations to relax and heal,,, just know our prayers are with you ,,,, update us as you can,,, we care,,, peace and God's  blessings,,,Jane

[millie]

A last post, maube, for a while...yesterday, after a lot of talking (well, I was listenong) and little kids whining about how they were not hungry) except for their dessert) my ear started to reverberate but it had done that before.  The numbness see,s changing...Idaresay the full headedness is one percent better.   I do not have pain for whicj I jave been given either extra strength tylenol or percoset. if needed. 
Every day, something is a little better.  I was told it is a process and maybe I am starting to believe...
I called doctor's office in NYC-they are closed two days and no surgeries till Wed all the transportation has been shut down and a state of emergency has been declared.  So I don't have to worry about that!  I was told the stitches could wait, anyway.
In this part of LI, while we are close to the Sound, we are very  high up pand big bluffs occur between the sound and where the houses start so no worries.  Just trees and outages.  Looks like Brigdeport and Cooneccticut side may have trouble.
Thank you all and God blessus all.
Millie

[It is what it is]

You have been in my thoughts and prayers.  I am so glad you are on the other side.  How are you now? 

karen

[alabamajane]

Millie,
Hoping you are doing better and have come through the storm with minimal damage,, our prayers are with you and all who are dealing with the aftermath,, update us as you can ,,we care about your recovery ,, Jane

[debraclark]

Alabamajane, We faired pretty well with the storm in our neighborhood while major parts of our state are devastated. Shore points are beyond devastation, up north jersey it seems they took the brunt of it too. I did alot of praying and thank God we were spared.  I feel so bad for all those people that were not  But the storm and its barometric pressure played with my balance and gave me such headaches. But from reading from others I was not the only one. Take care and thank you for your concern.

[millie]

Hi everyone!
First of all, thanks for your support and prayers!  Where would we be without those kindnesses?...
Last night we got power back.  On Friday, having been without power, heat or light since Monday night, we went to my daughter's.  How wonderful to take a shower, be warm, get your own cup of tea.
While we have the power outages still, we have not the devastation of the Jersey shore, Long BEach, Breezy Point.  NYU, the wonderful hospital where I had my surgery the 17th was evacuated when the  backup generators failed due to the hurricane. However, I was able to speak with my doctors SAturday and this WEdnesday am taking a bus in to NYC to meet with Dr. Roland in an alternate location.  My sister-in-law took out my stitches(on his advice) this past SAturday(she is a nurse.)  There is some sort of patch back there but he will see that Wednesday.
My face is still droopy but the family says it is better.  My left eye seems to be tearing a lot today .  I have no pain and I am not even taking extra strength Tylenol.  I am great from the neck down-  I am still numb in spots of my head, and my upper ear lobe and of course where the incision is but I think I am a teeny bit better each day.  Still feel full in upper left head but is it maybe clearing a teensy bit?  Still using drops and eye gel faithfully.
Looking forward to seeing Doctor Roland Wednesday. I had great care at NYU.   Though communication was disrupted at NYU due to the storm, as soon as they could, my doctors and staff  responded withemail with advice and support. 
(Doctors Roland and Golfinos)  What the doctors and staff and patients experienced during that storm must have been akin to a battlefield. 
Thanks guys and that is my update for tinight.
Millie