Author Topic: AN Newbie  (Read 45862 times)

nancyann

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Re: AN Newbie
« Reply #105 on: April 06, 2007, 04:52:48 am »
Sheree:  I forgot to tell you !!!  Balance therapy DOES make you more wobbly - the testing was tough, I remember that, but they want to CHALLENGE the balance,
            it helps force the good side to start kicking in better,  he will feel more off balance after the therapy, but that's normal.  They'll also give him exercises at home to do.  2x/week is routine, after a few months or so, it'll decrease to once a week, etc.
            I didn't go to a restaurant for months due to how I look when I eat, now I don't care, but I do put less food in my mouth & eat slower (now I'm the one to finish last instead of 1st). Yesterday I started choking on my saliva, it was horrible, I had to run back to my office for water; so things like that still happen but much less frequently.
            I had headaches around the clock for 2 weeks after I got home (3 weeks post op); then, they started to lessen little by little (it was extra strength Tylenol every 6 hours,  then 7 hours, etc. etc.).
            Also, he has the added PIA of being on Dilantin (I didn't have to go on that) - I've heard Dilantin makes people feel weird anyway, so he has that extra challenge to deal with.  Concentrating is difficult enough, being on Dilantin makes it worse.  That may be a reason also that he doesn't want to go online.   I had no ability to concentrate post op.  It's still rough at work (9+ months out), sometimes I feel I just can't think anymore & have to take a break.   Now I love peaceful things, taking a walk, just sitting outside, listening to music, etc.
           Noise still bothers me - all sound is going into one ear & it takes time to get use to;  loud noises are horrible.  You may want to look into a musician's plug for when he's in noisy places,  I used mine recently & it really healped.   I still avoid places where I know their are alot of people, talking; & I avoid the 'loud talkers' (the  ones who probably are hard of hearing but refuse to get a hearing aid).  Maybe you can tell the kids to 'talk softly' around dad, how he doesn't scream at them to 'shut up' is beyond me !!
Please take care Sheree,  give Don my best, & both of you keep a peaceful heart.    Nancy
« Last Edit: April 07, 2007, 08:44:29 pm by nancyann »
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

ppearl214

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Re: AN Newbie
« Reply #106 on: April 06, 2007, 06:39:22 am »
Sheree, you are truly, one amazing woman!  I sit here reading the update and know that Don is SO very lucky to have you in his life.  thank you SO much for this update. Please tell Don that we are cheering him on... and cheering you on as well.  Please take time for yourself, congrats on passing your real estate test and please remember to take time for YOU!

I am in awe of your strength!  I know there are days that you may want to say "oh, crap! what the heck?" but I truly do admire your strength and resolve. 

Hang in there and please send Don my wellness wishes.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Omaschwannoma

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Re: AN Newbie
« Reply #107 on: April 06, 2007, 11:15:50 am »
Sheree and Don,

Glad to hear you are finally on "the road" we (surgery patients) are on.  Forward progress made me feel better.  I had rehab for six weeks following surgery with every day/every hour of exercises at home.  My husband works at home and every hour he would stop his work, and take me outside for walking on the sidewalk and then walking and turning on the lawn, then in the evening he would shut off all the lights and have me go through the walking and turning around exercises.  My greatest challenges now are still soft surfaces, dim lit areas, standing w/o wobbling with one foot in front of the other.  The exercises I did at home seemed really ridiculously simple, but oh so necessary to get the other side of the brain to take over the balance.  I do know from experience that the first time with anything is always the hardest and worst.  Try to remember that as "a voice" inside your head tends to creep into your mind telling you "it will be awful." but ignor this as the second, third, fourth, etc. try tends to be easier. 

As for the headaches, yes, I did have 24/7 for approximately 2 months, then they began to taper off and I now am down to one ibuprofen on occasion.  I am 2+ years post op surgery.  In the beginning I did not like having to take mega doses of ibuprofen (acetaminafin did nothing) and by the time I got to where the pain was tapering off and my dosage was becoming smaller I decided to see how long I could go w/o taking anything, bad decision.  It's best to keep ahead of the inflammation game.  Best to be able to "read" the starting symptoms of head pain before it gets way out of control and you need larger doses for longer period of time, when a smaller dose before the pain really sets in would serve you better.  My signs were flashes of light, incision/scalp tightness, excessively dry eyes, stomach upset, irritability, ear fullness, etc., and when I saw these as signs I would give it more time to show itself and at the first sign of headache I took medicine.  Too much stimulation leads to brain fatigue.  Kids chattering, wife asking questions, searching your brain for words in response to questions, watching movie and trying to concentrate on the plot, something as simple as showering and thinking about other things at the same time creates "brain overload" and best to keekp this to a minimum.  This is also known as multi tasking and reading other posts you will hear of their difficulty with it.  It will get better only if you keep the "stimuli" to a minimum, oh and wear ear plugs too as noise is a stimuli.  This head pain will go away, just rest, sleep and know it's the ridiculously simple things that serve you best towards a speedier recovery--hope this helps.  Now rest--that's an order!

Creating single minded focus with everything, movies, conversations, simple day-to-day tasks, projects around the home, will help tremendously as well as, one day at a time.  It's a whole new you, a whole new world, nothing ever stays the same!
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Rob7

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Re: AN Newbie
« Reply #108 on: April 07, 2007, 08:23:22 pm »
Hello,
He was up and around a bit more today...he slept all day long yesterday like the day before.  I need to keep check on the depression if that is at all possible.  he is really feeling overwhelmed with all the problems and is having a hard time thinking I am ALIVE. And knowing things could be worse.  he complains about the noises in his ear more and more..I did look back on the threads and found the one about ringing and noises...uugh so not really any good news on that one.  I guess it is there, he said a lot of popping sounds and gurgle noises.  His facial nerve is calming down and it is almost normal again that is a good thing.  His voice is still off and will continue to be for some time they say.  i find his balance is more off than the beginning.  they DID NOT call me back on Friday to schedule the therapy appt next week...ugh!!  He is ok with that since he does not have to make that trip to Dothan..  We got invited to an Easter Dinner tomorrow and they planned it around Don's nap in the afternoon (after church) people here are so wonderful.  I think I have mentioned that already huh!  he is thinking the dilantin is messing him up bad. he is on 400 mgs a day.  i dont know if that is just something to blame or if it is really messing him up.. he does seem slower and not able to focus like some have said it will do.  thank you for the personal opinions and stories it sure helps to know what others have gone through. I have noticed he is much more frustrated around the kids and cant tolerate them...i guess it is the noise and bickering they do.  I dont know how to change that for him or keep them quiet (4 kids keep in mind) or at a low roar.  he is taking motrin for the head aches he HATES how the Lortab makes him feel therefore wont use it.  I do think he should keep the motrin on board and not wait until the pain is too severe.  I read your posts out loud to him now and he is reaping your advise too...THANK YOU he says....  Have a HAPPY EASTER...
take care,
sheree
Don
2.5 cm
surgery 3/8/07 to remove 75%
shunt surgery 3/19/07
recovering.......

nancyann

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Re: AN Newbie
« Reply #109 on: April 07, 2007, 08:36:31 pm »
Hi Sheree:  The Dilantin is definitely messing him up - maybe you can call the doc who ordered it Monday & ask him about how long he needs to be on it,  maybe lowering the dose, etc.   
                 I always said the same thing in the beginning "Thank God I'm alive", till the facial paralysis thing sunk in.  It is depressing what he/we are going thru,  there's no way around it,  it does take time to come to grips with it.  Remind him HE'S ONLY 1 MONTH OUT !!(tomorrow, right?), + he spent more time in the hospital then most of us (even with the facial paralysis, I had surg. on Mon., discharged on Fri.). (I went back to work part time after 2 months, & probably should have waited another month).
                 I don't know how old the kids are,  but noise is a big issue, as is alot of running around, etc.  I don't have kids,  I don't know how you can explain to them the need for peacefulness at this time for Don (maybe ask your pediatrician how to get the message across).
                 I tell ya, I don't know how he could even go to an Easter Dinner,  well, that's me - one month out I couldn't even think about socializing with others,  just trying to walk was a feat, doing regular daily living things, showering, taking walks.   It really takes alot out of you.
                  One month post op I was having the gold weight put in my eyelid.   The energy level was still low.   Headaches, balance issues really wipes a person out.
I wish you all a Happy Easter also;   This IS a rough time,  it's only been a month,   remind Don to be patient with himself.
« Last Edit: April 07, 2007, 08:49:41 pm by nancyann »
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

linnilue

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Re: AN Newbie
« Reply #110 on: April 07, 2007, 09:54:56 pm »
Wow, what a road you two are traveling.  I wish I didn't know it all too well.  But, I am here and very much alive and wish I could help Don in some way.  If I could say one thing it would be to "slow down, take a breath and close your eyes: imagine yourself further down the road and you will see that things are better, easier, tolerable" and as bad as today seems, I would bet that however subtle the change may be that next week on this same day, life will be ever so better.  This is a life altering experience, we certainly didn't choose it but we have nothing better to do than to accept this detour, go with it and we will find ourselves in another place.  The one thing that I will say is that this illness for Don effects the family as a whole and each person/child has a role to play and a place in Don's recovery.  If everyone can look at themselves and ask what they could do to help Don that would empower everyone.  Everyday each child could make a concerted effort to be quiet when they want to be loud or read a newspaper article or simply lay down and take a nap with Don to be close to him.  It is so hard for everyone to see the person that they love suffering so they feel powerless and chaotic.  So quiet time is a good thing for everyone.  I wish you a very Happy Easter..Holly
Left AN dx. 11/05 Linac radiosurgery 01/06 Burlington, VT for a 9mm x 5mm tumor.  No necrosis yet (2 yrs. post-op).  Multiple post radiosurgery complications, some permanent.  Have radio-oncologist here.  Now see Dr. McKenna, Mass. Eye & Ear Instit., Boston for flollow-up care as my main An doctor.

gb4821

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Re: AN Newbie
« Reply #111 on: April 08, 2007, 05:41:49 pm »
I to have the headaches but use a combination of Motron and Tylanol throughout the day.  I also have tried to go with out the medication but it is better to stay on it and take the pills then feel the headache coming on.  I had noises in my head as well when I laid my head down to go to sleep.  It was like a crackling noise that made me think that my stitches were breaking but they were not.  The doctor wasn't sure what I was hearing but said the head and mind will do funny things  to you.  I will tell you that the noise took a while to go away mostly but I still hear a few crackling noises still today.  The best advice given was to listen to my body and and sleep when you need it.  That helped me the most even though it was hard for me to take a nap int he day.  I now have started back to work as tolorated for the last couple of weeks and it seams to be going good.  Only get tired faster and the headaches come on hard and faster but if I keep the medication going then I can work it out until I get that good night sleep I look forward to each night.  It is like starting fresh the next day even if I over did it the day before.

Hope you and your family is doing better and that for keeping us posted.  It helps us as well.

Greg Brown
Greg Brown
1.5 cm AN Removed 1/22/07
Suboccipital Procedure:OHSU ( Portland Oregon); Dr. McMinemee and Dr. Delishaw
Complete removeal of tumor but hearing nerve on left side was severed.

nancyann

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Re: AN Newbie
« Reply #112 on: April 10, 2007, 06:49:03 pm »
Hi Sheree & Don:  It's me, the 'Keep a peaceful heart' police walking the beat,
                          thought I'd check in & give you guys a 'hello'.
                          Making sure you're following the rules:  rest, patience, rest, taking leisurely short walks, rest, patience, rest,
                          let your mind take you on  journeys to take a break from the post op routines/exercises you're doing, rest....
                          Remember, you're just starting this post op path,  I've been walking this beat for awhile; be kind to yourselves, take a deep breath, it will get better...
Always good thoughts to both of you,   Nancy
                         
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Rob7

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Re: AN Newbie
« Reply #113 on: April 10, 2007, 07:29:14 pm »
thank you for the check in...he has been sleeping and trying to stya down...that is hard to do.
tomorrow is his birthday so I am going to try to let him have a some what normal day with a nap or two!!! LOL
he wants some radio operated plane to play with and we ordered him a hammock to lounge in!!!
no word from his physical therapists to begin...beginning to get frustrated with them.  The kids are driving him nuts because they are taking advantage of him not being able to control them...makes me feel guilty to be gone from the house for any period of time..  I have to come in and lay a heavy hand on the kids and spank if need be.  tough times.. let me tell ya.  oh well this too shall pass and they will I am sure survive. thank you again for your thoughts prayers and words of encouragements
his head aches are still steady, the dilanten is driving him crazy and he is afraid of eating much for fear of triggering him to throwing it up...I am hoping this will too pass.
sheree
Don
2.5 cm
surgery 3/8/07 to remove 75%
shunt surgery 3/19/07
recovering.......

nancyann

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Re: AN Newbie
« Reply #114 on: April 11, 2007, 04:49:40 am »
Hi Sheree,  & Don:   HAPPY BIRTHDAY (although I bet it doesn't feel that way yet, but it is).   My birthday gift  to you is what I found out on my 51st birthday:
                             IT'S WHAT'S IN THE MIND, THE SPIRIT, THAT COUNTS, NOT THE WRAPPING (although we do appreciate when the wrapping feels better !).

                             Sheree:  give the Physical Therapists a call, then look into maybe a different group.  The 1st group I called weren't very polite, so I called a group
                             that were further away from me, & found them very responsive.  I started my PT right away (but remember I was 4 months out.   Maybe there's a
                             reason they want to wait but they should have told you that on the 1st appt.)

                            I'm not getting a good feeling about the kids taking advantage, hopefully some here with kids will have words of advice - My parents ruled with an
                            iron hand so I'm no help there.   But you're right,  wait till Dad gets back on his feet, unfortunately it takes time.....

                            Oh boy, that Dilantin is one bad mamma jamma, geuss the docs want him on it longer then....   
                            A hammock huh ?   Does it have a switch so it won't sway when he gets in it ?  lol
Best wishes guys, hang in there as they say,    thinking of you both,   Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

goinbatty

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Re: AN Newbie
« Reply #115 on: April 11, 2007, 05:23:51 am »
I am so sorry that you and Don have been through so much.   
I'm new to this and have not had any treatment.  But I can add a bit about Dilantin.  I'm been taking it for seizures for almost 25 years.  Twice in that time, I've accidently double dosed (stupid memory lapse; ended up buying one of those pill boxes to make sure it didn't happen again).  Within a few hours, it's was if my senses were slowed.  Reaction time greatly lessoned.  I basically had to sleep it off.  It may be that his dose is too high.  Therapeutic blood level is 10-20, but that doesn't necessarily mean that one can't be maintained seizure free on less than that.  Have they checked his level.  Also, how much is he taking. 
I'll certainly be praying for you both.  Being a caregiver is extremely hard.  He is lucky to have you. 
Keep us updated. 
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

Lainie181818

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Re: AN Newbie
« Reply #116 on: April 11, 2007, 04:36:09 pm »
Hi Nancy,
tell Rob Happy Birthday. Have you guys thought about some kind of Family councilling. My husband and I are seeing someone, and our marriage is on shakey ground. This recovery is a very difficult thing to get through,and I can't imagine how it would be with 4 kids to cope with. How old are they? They might listen to someone other than you or Don to explain what is going on. My Youngest son was 19 when I had surgery and it really scared him. He went from being a selfish normal teenager to a very protective and supportive Man. [ OK he's still selfish sometimes ] Seeing his Mum with a shaved head and sleeping most of the time, he thought I was going to die.  You are going to need some kind of outlet Nancy, the carer goes through just as much as the patient, just in a different way. As I have said before I think our partners should have their own cattergory on this sight, even if it is just to vent. Reruns of "Seinfeld" really helped us and I still watch it everynight. It is still funny no matter how many times you watch it.
Take care.
Lainie.

nancyann

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Re: AN Newbie
« Reply #117 on: April 11, 2007, 04:45:11 pm »
Hi Lainie:  Although I appreciate the words of advice, I'm not the one with the husband, Sheree is ! (though I'm sure she & Don will get a good laugh out of this as I
              did !!!!!).
              Oh, & I'm a big Seinfeld fan also !!!!!!!
Take care you cutie !!   Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Lainie181818

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Re: AN Newbie
« Reply #118 on: April 11, 2007, 04:58:31 pm »
Hi Nancy, so sorry what can i say. I guess with menopause, AN, and hooked on Seinfeld my brain is fried. Glad you got a laugh out of it.
Lainie
PS would you like my husband? he is An and potty trained.

Rob7

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Re: AN Newbie
« Reply #119 on: April 11, 2007, 08:41:13 pm »
you guys crack me up.......
yes it is me with the husband that had surgery...Don had  a good birthday and did not sleep much today though he wanted to sleep more...really worried and has his mind running rampit...  I know it is tough for him to not be able to take care of us and do the bills and to work...men they sure have a hard time to just lay down and be needy!!  Maybe all men are not that way but let me tell ya don is having a hard time just laying around.
Don is on 400 mgs of dilantin a day and would like to take himself off of it...I will call the doc and talk about it
I did put a call into the therapist today and did not get a call back yet.  They were really nice to us just needed to get the reports from the docs after his surgery..so maybe the hold up is not there fault but hey I am waiting and need to have an answer.  he is still throwing up daily and hating it and needs the balance therapy.  the kids need to respect daddy more BUT they are kids and selfish. Thank you for the advice and we have had a ROUGH year let me tell ya... he was in Iraq the year 2005 we lived in Fairbanks AK  so I took care of the 4 kids in our house we just built... came home had to re adjust to life then moved from AK to AL and then started a new job and then bought the house here... decided to retire and then got hit by the tornado and the rest is history and wont bore you with all the little details but tough to deal with and definately have put our marriage to the test...here I AM STILL STANDING ...then more than just the surgery the past few months.    with that said we have a strong marriage at this point and can handle what ever the Lord puts on our plate.  well better get to the kitchen and make sure we are ready for tomorrow to get here...
thank you for your words of wisdom keep them coming...
he did make the comment today and said that if he could do this all over again that he would NOT DO IT!!! thank goodness we are on the road to recovery and putting this behind us...
sheree
Don
2.5 cm
surgery 3/8/07 to remove 75%
shunt surgery 3/19/07
recovering.......