Translab on October 17th NYU

[It is what it is]

Wow!  You've had so much to deal with!  Thanks for the update.  It sounds like you are doing well.  Hurrah!!!!!

Karen

[Mickey]

Way to go Millie! So happy to hear your recovering well. Best wishes, Mickey

[millie]

Debbie, AlabamaJane, Karen, and everyone-how are you doing?
Debbie, like you, I have the dribbling issue at times if I don't purse my mouth just the right way and my left eye (surgery side, drrop side) seems to water a lot.  Head feels full still but a lot of the numbness has abated except right where the incision is -my lobe is feeling the way it always did but the top half of the ear is still numb.  Counting the positives...on the plus side, I walked on the beach today to check out the erosion and I felt a little wonkyheaded and my eyes teared a lot but I did not feel  off balance llike I'd need any help...just sort of fullheaded.    I also  cast my vote at the local high school...was able to catch up on SNL on Free on Demand TV  and it was really entertaining...we need our chuckles!....my husband was able to get gas and the line was only 15 cars long!  Yay!
Tomorrow we take a bus into NYC to see Doctor Roland at an alternate location because NYU is still closed.  Looking forward to that...will get his summary of what transpired during my surgery and be sure  we heard everything correctly.
Have a good Election Night everyone.  I hope and pray more of us are warm and safe.
Thanks for the prayers and support.  Praying with you.
Millie

[alabamajane]

Millie,
So glad to hear that you are doing so well after surgery and THE storm,,, thanks for updating us and take it one day at a time and you will do fine I am sure,, patience was something I had to work on developing more of,,

I hope your appointment goes well tomorrow ,, enjoy your "day out" and rest when you get home,,

Good thoughts and prayers for all of you in the area of this next storm coming,,, hoping it does not cause too much more tree damage etc.  Jane

[millie]

Jane...When you write of being patient, you have hit home.  It is hard to be patient.  I will try to stay constructive and positive.

[Shirley48]

Hi Millie, so glad you are a postie now and things went well. I also had my surgery at NYU and felt very confident of my doctors. I do think they sent me home a little too soon (3 days in hospital!) Please know that things WILL get better! It's a slow process so be patient with yourself. I think, too, that our age (I'll be 64 next month) doesn't work to our advantage.  I've just begun vestibular rehab 3 months after surgery and am working thru increased dizziness. The doctors said full recovery takes a whole year, so we're on a journey. One step at a time.  Shirley

[debraclark]

Millie, glad to hear you are doing so well and comforting to know others go thru the same things like my mouth dribbling. You don't mention if you have any head aches or head pain? I have plenty of that at times, hurricane sandy made it worse. I take Ibruprophen now for pain (per my surgeon) and I have some pain pills left for bad times. Like after therapy sessions, my balance is doing really good but they are working on my neck muscles, etc can be a little painful afterwards. Shirley48 I was not in the hospital long either I went in on a Tuesday and had retrosigmoid surgery (10 hours) spent the night and part of the next day in ICU then was transferred to a room and spent rest of that day and night and then was discharged in the early afternoon, they tell me I was a star patient that I did really well and I did where balance was concerned, I had no dizziness but was off balance somewhat (could have been worse) They indicated to me that recuperating at your home is much better because number 1 you get more sleep, and number 2 you are only surrounded by your own germs that your body is immune to. Anyway I wish all the best for you two and everyone else. I just keep looking forward to each day to see improvements. The most important of it all is that we found our tumors, we had surgery and we are here to tell about it. LOL Take care.
PS Watching the snow come down but not cold enough to stick just yet. =) Part of our noreasterner.

[millie]

Yes, Deb and Shirley-I too thought I was sent home a bit soon having had surgery Wednesday, NICU  through Friday afternoon, then a step down room  through Sat and early morning discharge on Sunday. I was surprised at how little one can do, I think, when we wake up from surgery and anasthesia-I guess I thought yay, surgery was easy, they knocked me out, took it out, now I'll just wake up, jump up, and get on with my life.   Hmmmmm.  Not as easy as that....and maybe because I too am 65, but I like to think, a young 65. At first when I tried to walk, I cried because I was pretty unsteady.  Then it got better.   I had  hold on to people or things but I could do two flights of stairs SAturday while holding on to the railing and I guess I was becoming strong enough although I did feel terrific wonkiness.  Fullness of head and the feeling of a spirit sitting on my left head-is that what makes us feel dizzy? You are right also when you say the hospital is noisy and the germs are a worry.  I did not sleep well until I got home...I certainly was never comfortable in the hospital bed, but I think that was due to the surgery, bandages, head trauma, etc.  However, I did not have great pain.  Just great discomfort days 1,2 and 3.
This past Wednesday we took a bus into NYC for my post-op with my ENT Dr. Roland.  Since NYU is still closed we met at an alternate location. My wound looks great.  (My sister in law who is a nurse removed the stitches after the hurricane since the city and NYU were  closed down)  He is pleased with my face and feels it is coming back.  He said my head may feel weird for twelve weeks.  I am using eyedrops for my lazy left eye.  He reiterated they got all the tumor and while it was pressing on my facial nerve, my nerve was not damaged and the droopiness will abate eventually.  He seemed really happy and so I must be too.  I must be patient.
Thanks for sharing, and talk to you soon.  Tomorrow it will be 65 here so let's get out and walk,,,,God bless us every one.  Mil

[Lillygold]

Millie
 Very interesting posts. I hope things are better in your area. Pictures on TV looks like things are terrible. Glad you described how things were right after your surgery. I am having my surgery Tuesday the 17. I hope I do as well.

[millie]

Lilly-
Each day for me seems a bit better...but it is a process, and each person's journey is unique, and I think each person heals differently with a different time frame. After my first five days, I posted on this forum and wondered if it would get better, and folks on the forum told me  that Yes, it would get better, and   time and patience were needed. I needed to hear that...Also,  prayer helps me a lot, especially in the early days when I seemed so confined to myself,  prayer helped me. I
Today is day 24 post op and  I walked about a mile and a half on a nature trail with my husband.  I have not been assigned any  vestibular therapy or exercises-just told to look around at everything and walk a lot.  So I'm trying that.
As for the hurricane-our power was restored on the sixth day-but we sought hot showers and heat before then and were lucky enough to have family  fairly nearby for that. Gas is tricky, and we calculate what we do based on gas supply.  We stay home a lot, but for those who are going to work -or commuting to NYC-what a nightmare.  About 200,000 people still have no power.
Lilly, keep us updated, be strong,  and you are in our prayers. 
Best wishes,
Millie

[millie]

Today is the fourteenth.  Four weeks since my surgery.  My head still has that fullheadedness.  My face is a little less droopy but it is the same the last three days.  I slept a lot yesterday, but I walked around the block today.  My left eye tears a lot so I am using drops and gel. 
Hope Lily did well.
Mil

[debraclark]

Hey Millie, I am at the 7 week post op level, I still have some facial problems but getting better, I actually could use a straw in my ice tea last week =) and as for the eye tearing it sure does that especially when going from warm to cold temps. So I use the eye drops and ointment still but I have noticed that slowly getting better too. I don't have so much of all the full headedness but I do have probs with my neck muscles, hurting and headaches. And sometimes when I get this tickle in my throat and cough my head will hurt pretty bad. Otherwise my balance is getting pretty good I am in outpatient therapy twice a week for balance and they are working on my head and neck pain and stretching the muscles with exercises. (I guess this what I have to deal with for now from 1- the cutting of the muscle thru incision and 2-being in surgery for 10 hours and being immobile so long. But still things are really looking up, each day will find you getting stronger and steadier on your feet. I have doc appointments in Dec and Jan then will decide if time to go back to work, etc. Again each day things will get better 

[millie]

I hope your neck pain is getting better, Debra...my own surgery was only about four  hours, I think...then, my head was pretty numb for weeks, and perhaps if I had pain, I did not know it? I was told to take extra strength Tylenol or the pain med they discharged me with but I have found the Tylenol to be sufficient. Lately, but not too often, I get a sharp pain deep in that ear, or a random pain in my head-last night I took two Tylenol about 3 A.M. and then was fine. 
  I do however, still have numbess under and around the incision, and especially the bone immediately behind my ear, and the top of my lobe. I've been wearing hats to stay cozy when I go outdoors...it's not that cold yet, but ats help with the hair, too, so find a neat wool hat and have some fun!
Today I used lots of eyedrops and tonight I put gel in and taped my eye shut to give it a rest.  My facial droop is much better.  I dare to say the fullheaded feeling may be changing slightly-slightly-incrementally is the word Sheila used.   Baby steps.
I will pray that your headaches subside.
Thanks for your kind words...Mil

[debraclark]

Thanks for the kind words too Millie! Right now I am taking Ibuprophen per my doctor and I only take a pain pill at night time, they are soon to run out tho =( I don't want to and I know eventually I have to stop taking Ibuprohen and switch to tylenol. I hope that when I do the tylenol works for me too. =) I also have the numbness around the incision, actually on that side where the surgery was more so at times. I am doing my neck exercises at home per the therapist- I sincerely hope that helps in the long run. They claim no pain no gain? Anyway baby steps for sure! Take care! We will get thru this!

[millie]

Today we went to my husband's doctor's visit and then some grocery shopping at Costco.  I did fine but my eye teared a lot...using a lot of eyedrops today...My balance is good-it's different from a year ago, but it's still recovery time. 
I spoke today  with my surgeon's nurse practitioner when I called for the follow up appointment in December. She said from the way I spoke and sounded,  she could tell I was pursing my lips better...so my facial components must be getting stronger.  I said I had less numbness and still had some fullheadedness and she said that was normal.  I will have an MRI three months after October 17th surgery (Jan?) because by then the tissues have calmed down enough for them to check what's in there clearly.  She reiterated they got it all so I am very happy and thankful.
Praying for us all.  Mil