Satman,
Oh my super hero needs a
BIG ole Texas size HUG!
You have
every right to feel grouchy… you have been through the
tumor mill. (
That was a pun.
) Remember that you have had one of THE
biggest tumors removed and you had more time in surgery than many of us … Do not start reading recovery stories and
compare them to your own as hardly any of us had half as big as your super sized 8+cm AN tumor.
Facial issues Perhaps you need to go to facial therapy and have them put “the probe� on your face to see if there is any firing or activity… if there is then this will take
more patience on your part for things to heal. I was told by a specialist…
http://www.ohsu.edu/ent/ear/nguyenhuynh.html (being a Harvard and Stanford grad I take him to be well educated on the subject)
… that “facial palsy can take anywhere from 3 months to 3 years to resolve� (I choked when he said “
years�
).
It was 3 months and 5 days (not that I am counting
or anything) until I had 1 mm of
slight movement… as my surgeons left residual nerve on my tumor (i.e. they did not hardly touch it) as we agreed pre-surgery. I know there is a small possibility I may have to return for more torture and a run through the ‘
tumor mill’ again “
if� there is re-growth.
Remember that you had
the biggest whopper of
us all – and your facial nerve was
stretched….big BIG time! If there is no nerve response to the probe then you need to consult with a plastic surgeon. Even “if� the facial nerve was damaged beyond natural healing (& time) or repair (the nerve graph/jump- BTW will have Bell’s palsy resolving at a
slower pace than those who did not need a graft)… There ARE treatments that can be done to reanimate the face.
Read up on NancyAnn (our
true facial hero on the forum here)
http://anausa.org/forum/index.php?topic=5544.0http://anausa.org/forum/index.php?topic=5414.msg48773#msg48773She had a tendon transfer just very recently
http://www.hopkinsfacialplastics.com/gallery_facial_reanimation.phpDo you have a copy of the ANA book on facial issues? If not I highly recommend it…
https://secure.baxinternet.com/~anausa/for_sale.htmlThe Facial Nerve and Acoustic Neuroma: Possible Damage and Rehabilitation (AN4)
Tips and information for patients who have facial weakness or paralysis after treatment for acoustic neuroma. Includes an explanation of the facial grading system and some exercises that can be performed at home to improve facial tone.
Eye issues You really need to see an ophthalmologist.
I understand that a tube can be placed it help with eye tearing. After quickly figuring out that the “E� in ENT does not stand for “eye� I went straight to my ophthalmologist who quickly referred me to a Oculofacial Plastic Surgeon. I now see him every 2 months. He did not advocate surgery for me as much a “patience�(which some days wears thin as I fiddle with the double-side-sticky –taped-on eye weight) … and
"if" there is no improvement then we may do surgery. I am not near as far along in the time frame of recovery as you are …SO I can imagine you would be getting REALLY frustrated by now.
It is totally OK for you to express this Balance Issues Night before last I had a rotten and restless night of sleep- as I was up with one sick child (flu season and all)… and yesterday my balance was
terrible. Last night I took benadryl and an 8 hour dose of Tylenol …and I slept thought he night! My balance is much better today. I have noticed that when I am fatigued my balance and motor coordination is not as good as when I am well rested. I also notice that if I do not get my 20 minutes of power walking in a day - my balance, spirits and energy is
not as good. I know you get up at an ungodly (and un-humanly) hour to go to work. You also have a pretty high stress (adrenaline rushing) occupation… You have to ask yourself if this is magnifying your symptoms and perhaps slowing down your recovery.
Are you getting in 20 minutes of
heart pumping and balancing exercise in a day?
Sleep deprivation? I
really want you
...to read a chapter a night of
Sleep Thieves by Stanley Coren. He is funny enough that his writing just may lift your spirits. He also has an interesting chapter on people who work the “graveyard shift� (i.e. working before 5 am) which ranges from factory workers to nursing staff… night shift ER staff to the local baker.
The blues RE
I’m just fed up and sick and tired! Satman Super 8 -
It is ok to feel this way … and I would be worried about you if you did
not express this.
You are always so fun and spunky in your posts that I would not observe you to be “clinically depressed� … but I am
not around you daily to be accurate on this.
Please read this
http://en.wikipedia.org/wiki/Clinical_depression"If" you feel that you are heading that direction
please talk to your PCP about it. If you are just having
one really bad AN day – well here is a big Ole ANA family member HUG.
Think how far you have come (walker, in bed, not able to drive, unable to work at all, endurance tests with your “
physical terrorist �) and where you are now…
Keep moving forward Super “8� … and know
it is ok to have “fed up and sick and tired!� days- you DO have a human side. You do
not have to take a dose of kryptonite and wear a super hero cape ALL the time … and you are still
much appreciated even if you have days when you are not feeling “
faster than a news truck or higher than a traffic helicopter�.
Cheers (and more hugs),
4
