Update on GramaSuby!

[GramaSuby]

Thanks Maureen, you make me feel well cared for

[Brewers7]

I don't remember much of my nearly 2 months in ICU.  I am guessing that resulted from brain trauma, massive complications and medication.  The good news - my memory is good now.  Take it easy on yourself.  FYI GramaSuby, I spent an additional 2 months at the Shepherd Center in Atlanta for rehab.

[GramaSuby]

What is weird is that Thurs Fri I was in ICU, Sat and Sunday in a regular room before going back to ICU Sun pm Its those 2 days that I was up sitting in a chair (though slumped over my son said when he walked in,( can't believe I didn't fall over onto my head)  I recognized my grandchildren's names and was having conversations w/ them. My grandaughter even fed me applesauce while I was sitting in the chair. She took over when my son had to do something. She is 12 and started to cry a little as she fed me so I'm told that I said very seriously, "Don't worry Emma, your applesauce tastes better than your dad's!" SO its not like I was comatose though I was confused, moaning and agitated most of the time. Where the hell were the nurses? Tomorrow I will be requesting my medical records. 

[GramaSuby]

Sorry I'm so fixated on the missing memory part but it is just so strange to not know something that t of my control.
Went up to Elljay for some good ole GA apples today.  When I got out in the parking lot I grabbed onto a small shopping cart and as I was walking I could feel myself reeling and wasn't sure I would stay upright.   Still getting exploding headaches that usually don't stay long.  I'm not used to the funny looks I get when I talk to strangers since only half my face is working.  I told my grandkids that I was going to dress up as a Cyclops for Halloween and they laughed, they share my sense of humor. I look  forward to these side-effects going their own way.

Sue

[cindyj]

What were you doing up at 2:30 in the morning  

I was up in Ellijay and Blueridge last weekend.  Didn't get any apples, but passed the orchards and the traffic was backed up a mile or so on that road! Yes, the open spaces can be overwhelming to the vestibular system...worth the wobbliness, though, to get out in the nice fresh air!

Cindy

[nanlt124]

hi sue    sorry you had such a rough time    you sound like you are on the right track now     i had my surgery on the 30th also   my only complication was my bp (i have fought with this issue for 25 years so i wasn't surprised)   i was in neuro icu until monday and then sent home   i do not remember arriving at the hospital (actually i do not remember the ride to, arriving at, or checking in to the hospital) weird      i remember the doctor initialing my ear prior to surgery and nothing until late friday night     i keep trying to remember the things people tell me i said and did but, i am blank   you are not alone           as far as recovery, you are feeling much the same as i am    i have slight headaches (nothing like yours)     my vision has improved but, not perfect    my eyes get very tired and so do i       my face is close to normal     my taste is off and i do not like anything i eat or drink   my balance is off - again, i expected that and have not used my walker for over a week     
i know you have had a rough time but, you are home and recovering       hang in there and think positive      nancy from clearwater

[GramaSuby]

Hi all,
For the most part I'm on a steady recovery path w/ facial paralysis slooowly coming back and my balance and walking is much improved.  What concerns me is that I still get headaches that explode suddenly just after I get up from sitting.  Yesterday I almost passed out w/ the pain.  The other problem is the weird feeling I get when I'm walking inside a store or other indoor places. I think it is a combo of vertigo and dizziness.  Update from both surgeons was positive. I need to return to the neuro surgeons in 3 wks and the ENTs in 6mos.
Be good everyone and have a great thanksgiving!
Susan

[CHD63]

Susan .....

Glad you are continuing the upward path to recovery.

Re:  the exploding headaches ..... with the "I am not a doctor" reminder, it could be from blood pressure changes from sitting to standing ..... but you should definitely let your doctor know that it is happening.  Have you tried changing positions very slowly and it still happens?

Re:  the weird feeling in a store ..... that may never totally go away.  Almost three years later, I still am very disoriented when I look down a long aisle in the grocery store.  This is a vestibular phenomenon due to lack of input from your vestibular nerve on the AN side.  Ideally, if you could walk up and down the aisles while turning your head from side to side enough times, it would help train your brain to the one-sided input.  Second (and better) idea is to walk up and down a long hallway in your home, turning your head from side to side and then again turning your head way up and way down.  At first you will need to steady yourself against the walls, but it does get better.

By the way, this is what we call wonkyhead!   

Clarice

[pjb]

Susan .....

Glad you are continuing the upward path to recovery.

Re:  the exploding headaches ..... with the "I am not a doctor" reminder, it could be from blood pressure changes from sitting to standing ..... but you should definitely let your doctor know that it is happening.  Have you tried changing positions very slowly and it still happens?

Re:  the weird feeling in a store ..... that may never totally go away.  Almost three years later, I still am very disoriented when I look down a long aisle in the grocery store.  This is a vestibular phenomenon due to lack of input from your vestibular nerve on the AN side.  Ideally, if you could walk up and down the aisles while turning your head from side to side enough times, it would help train your brain to the one-sided input.  Second (and better) idea is to walk up and down a long hallway in your home, turning your head from side to side and then again turning your head way up and way down.  At first you will need to steady yourself against the walls, but it does get better.

By the way, this is what we call wonkyhead!   

Clarice

Hi, Clarice has great advice I just wanted to add the toe to heel is another good one for balance it is amazing how you see yourself progressing. I was always afraid not being a drinker if I was stopped by the police I would have failed that test thank goodness for breath test which would have saved me... There are other exercises to do with your eyes closed you can research them on the computer but just be careful there is nothing in your path to get hurt. Hoping it gets better...

Best Wishes,

Pat

[leapyrtwins]

The other problem is the weird feeling I get when I'm walking inside a store or other indoor places. I think it is a combo of vertigo and dizziness. 

Susan - 

I had this post op.  In my case it went away by about 6 months post op, I believe.

I hope this problem goes away for you, also.

As far as things you can do for your balance, I have some excellent vestibular exercises my neurotologist gave me and they helped a lot with my balance post op.  If you PM me your email address, I'd be happy to send them to you.

Jan

[GramaSuby]

Has anyone had a patch of numbness on their skin not associated w/ an incision?  My inner thigh and the front of my thigh almost down to my knee on the same side as my AN is completely numb. I noticed it in the hospital but keep forgeting to ask my Dr.  I guess it could be from the fat graft on my abdomen since its about5 inches long. Just don't know
Sue

[Cheryl R]

Sue, I doubt it is from your fat graft but somehow nerve related.      As it been ever since your surgery?      The position you were laying and then with your possibly not moving a lot when you had the problems past surgery.        It may come back ok in time but do ask your dr.       That was sure a large fat graft incision.     Mine are only about an inch as have 2 due to a CSF leak surgery.   
                                               Cheryl R

[GramaSuby]

Today is a good day The rain is gently falling w/ the sound of the rain drops hitting the leaves making me feel drowsy.  But I do want to say that in every aspect I am healing, even the facial paralysis seems to be improving What a difference 7 wks makes!
I did find out that after I was restrained on day 4 that the Dr's thought I might of had a stroke right after surgery. It still bothers me that it took so long for them to figure out something might POSSIBLY be wrong with not being able to feed myself, stay awake, talk in full sentences or know where I was. Hm-mm. It still keeps me up at night.  This probably qualifies for the cognitive/emotional issues category under post op.  Anyway, time for a nap

[GramaSuby]

Me again
I saw my surgeon Tues and he was joined by Dr Millar, one of his resident Dr's.  He, Dr Millar, was a godsend while I was at Emory/
He wrote an order for me to wander around campus as long as I returned in time for my next antibiotic treatment. This was a morale booster and helped me to stay instead of leaving AMA.  He told me that he was the one who took care of me in recovery so of course I asked him to fill in the blanks for me. He said that I was in a great deal of pain and that he ended up giving me the max of morphine that I could have w/o putting me back on a breathing tube. He is a sweet humble man and i am grateful.
The great news is that I don't need to go back for a year!   Dr Millar also said that the facial nerves take a year to totally regenerate so my facial paralysis will take a little longer to go away. Today is a good day
Happy Thanksgiving to all!

[Jim Scott]

Susan ~

Thank God for compassionate, caring doctors!  Congratulations - and Happy Thanksgiving. 

Jim