ANA Discussion Forum
General Category => Inquiries => Topic started by: Melissa778 on March 26, 2008, 06:38:39 am
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So I have scheduled my surgery with Dr. Kartush at Michigan Ear. I am having Translab done on May 15th. AGH! It seems so close, yet so far away. I'm nervous, but anxious to move forward and get this thing out of my head :) Dr. Kartush and the team at Michingan Ear are very impressive, very informative, and very supportive. I was highly impressed and I feel very comfortable with them, which is a huge relief as I have nto had much luck in finding a Dr. I was comfortable with. It's unfortunate that I have to go the translab route as currently my hearing is 100% perfect in my right ear (my AN side). But I'm having some facial distrubances and serious balance and vertigo issues.
So now for any posties who care to share......what twas he surgery and recovery "REALLY" like? what can I expect? How difficult is it to get back to a "normal" routine? What is it like waking up with SSD? :D Did I ask enough questiosn there or what?!?
Melissa
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Melissa~
Glad you got everything scheduled (& more importantly found a doc you like)!! I would LOVE to talk to you sometim -- it is easier for me to talk than type! PM me your phone number if you are interested (I have unlimited LD so this is not a problem)!
K
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I haven't got AN but I have got sudden deafness, is there no way that your hearing can be preserved as it is perfect? If not then of course you will cope but I just know that I would love my hearing back. Loads of luck with your surgery. :)
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Hi Melissa
Congratulations on setting a date. I got it down on my calendar -- just don't make me get out the white-out ;). Since your AN and mine were similar in size, it's possible the we may share a lot of the same experience -- but as they say, no two are a like. I'll write more to you as I think about it or you have questions. But first -- the surgery -- I think the toughest part was getting out of the car and walking into the hospital. I was first up in the morning so it was very quiet and peaceful in the waiting room. BTW, see if you can schedule your surgery early in the day. According to friends in the medical field, if you're early, you have less of a chance of getting bumped back by other surgeries. And since you'll be fasting, you don't have to deal with that as long.
Make sure you have your paperwork done before you go to the hospital. It's just a matter of handing it in and getting your wristband. You go to a prep area where you get your hospital gown, leggings and your bed. I think I had my IV inserted then. After a short while, I was wheeled up to a pre-op room. They shot me up with vallium. I had a pleasant chat with the anesthesiologist. They wheeled me into the operating room. And the last thing I remember was trying to be helpful being shifted from my bed to the operating table. The next thing I knew I was in ICU all tangled up in tubes and wires with someone waking me up. And within minutes, my daughter was next to my bed and we had a nice talk. For me the worst thing was being thirsty -- ice chips just didn't cut it. And I had an allergic skin reaction to the anti-bacteria scrub I had been using on my scalp for the previous two days. I was itchy. There was no pain around the incision -- some in my stomach incision. As far as SSD, I was already 82% deaf on the AN side. It really wasn't an issue. But I don't think you'll notice it at first since you'll have a heavy dressing on the AN ear that covers the whole side of your face. I'll see if I can find a picture of me in ICU. Then I had top deal with two days of ice chips, constant monitoring and boredom in ICU. But it was when the surgeons came to vist that I found out......
(to be continued)
More later
David
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Oh, David - that is SO not fair! I was hanging on your every word and then ... To Be Continued!!!!???? ::)
Melissa, I hope you don't mind if I hang out on your thread. I, too, am awaiting translab and am filled with questions. Dont' have the final date yet - hoping for April, but more likely May.
BTW, I tried putting a plug in my AN ear to see if I could simulate SSD - didn't really work as I could still hear stuff. Kind of hard to imagine what that will really feel like, isn't it?
How about hair washing?? Is there any way to wash it in the hospital?
Deb - hangin' in NJ
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Hey Debbie and Melissa
Sorry to leave you cliff-hanging. A friend came over to go for a hike and that looked like a good opportunity to break away.
I'll write more about it tomorrow but what the surgeons said was that "the surgery was successful, the tumor was out and it was benign, but (smiles masking something) we had to stretch the facial muscle nerve in removing it. You'll be fine." Tune in tomorrow to find out what "fine" meant.
Hey I'm a actor/writer.
David
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David, you have all the qualities of a best selling author... I'm on the edge of my seat. Oh, wait, I just lost my balance and fell off... ;D
Deb - hangin' on Melissa's thread...
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Deb -
hair washing - or lack of it - is generally one of the worst parts of post op recovery. I couldn't shampoo until the stitches were removed from my head - about 9 days post op. I think that's pretty standard procedure with AN surgery.
I actually felt sorry for the doc, my head was so gooped up with bacitracin at that point. Grizzly.
Jan
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The not washing the hair sounds pretty yucky.......I know there are dry shampoo products out there.....Anyone ever try anything like that?
David......I just love the way you keep us hanging.....like reading a good book you cant' put down.....And then something interrupts and you can't wait to get back to it :)
Deb, What are your most bothersome symptoms now? I know the hearing loss for me is going to be rough as I have 2 small children......
My main worry right now is the facial nerve......While my AN is only 1.7cm.....I have lots of facial twitching.....so I'm really nervous about that.
Kinda off subject......but has anyone heard from there doc or read anything anywhere that these stinkers seem to grow faster the younger you are and they have a higher growth rate in pre-menopausal women? Something to do with Estrogen I guess....just wondered if anyone else had heard or read anything about that. I trust my doc, he is very well versed and one of the best. I had just never read or heard that about AN growth.
Have a wonderful day all......Supposed to snow here (Toledo, OH) again today and tomorrow.....looking at possibly 3 inches of snow coming my way? Where is the SUNSHINE?? :)
Melissa
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Melissa -
The not washing the hair part is yucky, but I don't think dry shampoo is recommended - it can flake off and get inside the incision.
I've read that there is speculation that the hormones related to pregnancy and menopause can increase AN growth, but I don't think anything has ever been proven. Plus it wouldn't explain all the men with ANs. Another theory is cell phone use, but it's never been proven either.
I can understand your concern about your facial nerve, but the size of your AN doesn't necessarily dictate whether or not you'll have damage. My AN was 2.5+ cm and I don't have facial nerve damage; there are others like me also.
And, where is David? I stopped in specifically this morning to continue reading his story; I'm hanging by a thread here ;D
Jan
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Hi again-
On the shampoo front - I just talked to MaryMomof3 who is a week and a day post op. She sounds fabulous! She reported that she was able to shampoo her hair (with baby shampoo) the day she got home! Good news indeed. Don't know if this relates to the procedure or not, though.
Melissa, the only really noticable symptom I have is the hearing loss in my AN ear (speech discrim is about 75%). I had some tinnitis last year, but it went away and never came back. I also have, apparently, gradually lost much of my balance but my trusty brain seems to have compensated well. It's pretty weird that you could have a thing growing in your head and not have any more symptoms than that, isnt it?
David, where are you - we're all on the edge of our seats (which may be dangerous for some, given the whole balance thing!)
Deb - still waiting for my date...
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David,
Come on back...poor Debbi is out there hanging by this thread....Please rescue her ;D Boy can you tell he's an actor/writer or what?since the stike is over he had to find some way to keep us hanging ;)
You guys are so much fun....
I guess I have all the probables for having an AN. Menopausal and a cell phone user. ::)
I too am watching this thread since somewhere in the future I am facing surgery too. Next MRI in July.
Melissa, I know you are so glad you at least have a date. It's wonderful that you are so comfortable with your doctors! Got you on my calendar. Praying for you! Will be watching your progress.
Glenda
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You were waiting for me???? Opps. It's my birthday and I slept in. Ahhhh.
So where did I leave off? In the St Joseph's hospital ICU. So there I was lying in a tangle of wires and tubes with boots that compressed my legs every minute while being poked and probed and tested every 15 minutes or so whether I needed it or not. It was pretty boring. The ice chips were a blessing. I found out though what a stretched facial muscle nerve means -- temporary facial paralysis on my AN side. The "temporary" - according to the surgeons -- was a month or two. Which was great. I get to hang out in bed doing nothing until the writer's strike was over and then back to work. "Hmmm," Dave hmmmed to himself,"I wonder what could go wrong?"
It was the second day in the ICU that I was introduced to the "Moisture Chamber" -- I'm sure that sounds more ominous than it is. The chamber is a plastic patch with padding around the edges that fits over your eye. One of the many downsides of facial palsy (paralysis) is that you can't close your eye. Not a good thing. An eye that doesn't close gets very dry and painful. It needs a constant dose of liquid goop (Refresh Drops) to keep it moist. I was getting eye drops a lot when I was in ICU. And of course as I mentioned before, I had an allergic skin reaction to the anti-bacteria soap. And there was the removal of the catheter. I cringe today at the thought. One saving grace through all that was painkillers on demand. So there I lay in a semi-euphoric state hooked up to machines with my scratchy eye and itchy skin. What wasn't an issue though, was the the surgery incision. Other than the head bandage I barely noticed it. But I was ready to get out of there and eat something more than ice chips.
The evening of the second day in ICU I was finally moved to my room. And I had my first "meal" -- jello and juice. It tasted great! During the first night in my room, my eye was the biggest issue -- and a slight headache toward the back of my head. Wednesday, an opthomologist showed up to check out my eye and to put an extended wear contact over my eye to protect the cornea. And my daughter and friends stopped by -- it made the time pass easily. I couldn't really read because of my eye -- too much of a strain. But what I could do was watch TV. What I remember most was the Pizza ads. I developed a craving. The hospital food was hospital food. It tasted odd. That afternoon, with the help of my daughter, I took my first walk in the hallway. I felt fine. It's sort of like walking on the deck of a rolling ship. But I did notice other AN patients walking around with walkers. I don't know why I was so spry -- at first. I think a lot of it had to do with pre-surgery physical conditioning. The day before my surgery, I hiked up a local canyon and I had been doing a lot of kayaking. Debbie and Melissa, I don't know if it makes a difference, but you might want to consider bike riding or other balance exercises that you are able to do.
Thursday was more of the same. Eye goop. Odd tasting food. Bandages came off. Hall walks. Visitors. Eye patch. Junk food craving. I was ready to get out of there. Finally, on Friday (4 days after surgery) I was cleared to go home stack of prescriptions in hand for every known (and some unknown) malady. My daughter was on hand to wheel me out and take me home. It was the first time she mentioned that I looked like a pirate. That wasn't the last time I heard it. As you will see on this board, it's a common theme. Capt Deb commands the ship here.
So I got home and the first thing I wanted to eat -- Nachos. Something that tasted. But there was something odd about them. I couldn't taste them. Nada on the Nachos. All of a sudden, I realized my taste was gone. Today, four months later, it still isn't there completely. I found the only food I could actually taste was Greek food -- especially Domades (grape leaf wraps). Why I don't know. I'm having Greek food for my birthday dinner. So I was finally at home with a scratchy eye, half a smile, and not taste. It wasn't until Monday when I friend took me to the eye doctor that I discovered something else....
(to be continued)
Have a great day!
David
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Happy Birthday David!!!! ;D
I was really getting into the read again and there goes the writer in you leaving us on a cliff again! Poor Deb.....just as she was climbing up there you go and (to be continued) Hang on Debbi............ ;)
OK David, we'll let you off this time, I mean since it's your birthday and all :D
Hope you have a wonderful time at your birthday dinner. My birthday wish for you is that your taste comes back , your (temporary facial paralysis) is gone and that you no longer are required to wear the eye patch. You can keep it to wear only because you want to, when you are on your pirate duties ;D Aaaarrrrrr...........
Glenda
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Hope
I should have included you too in the advice on the balance stuff since you're up first. How are you doing?
David
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David -
thanks for somewhat finishing the story; I'll have to tune in again to read the ending.
Your taste will most likely come back - mine eventually did; I can't remember when, but I do know it took a while.
Hope you have a great birthday.
Deb -
I am SO jealous of Mary. I forgot how many days she was in the hospital, but regardless, she got to shampoo at least a few days before I did. Good for her!
Jan
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Noooooooo!!!!!
This is more gripping than an episode of Lost!! (That's a huge comple\iment - I 'm a big fan!) David, I've gone from the edge of my seat to the floor (yep, gotta get on that balance ball asap!)
But, you deserve the night off - have a fabulous birthday with lots of Greek food! hey, now that you mention it, I could go for some domades myself...'
Melissa, how you doing?
Hope, I know you talked to Mary last night - she sounds amazing, doesn't she? She is now my offical recovery poster girl!
Deb - from the floor.....
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David,
I was glued to the screen too! Thanks for sharing your sucess story. These experiences are what's getting me through. Did you have much trouble with balence or vertigo following surgery? I am hanging in there. I just spoke to Mary and she had a terrible time with dizziness post op. this makes me a little nervous, but I just have to take what I get. I may have had some minor balence episodes pre-op, but I am expecting the worst is yet to come . Could they give you anything for the dizziness? What prescriptions were you sent home with? My docs said I wouldn't be discharged on any meds. That's fine with me. thanks for thinking of me.
Hope
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Hi Hope
Just wrote a post to you but I think I forgot to hit the post thingy. I have an excuse. I turned 60 today -- hey am I entitled to senior meals at Denny's? Anyway, yes they do have a medicine for dizziness. I think it was presrcribed to me -- but I didn't take it. That wasn't really an issue. I had other things to deal with. I think your "take what I get" is the best attitude. I went into it with a life or death attitude and when I woke up in ICU, I thought I was in the clear. Nothing really serious -- as you will see from the board -- but some things can take faith and patience. I'll write more tomorrow.
Meanwhile, for those of you who are concerned about shampooing - you can always do what I did -- I got a number 1 clipper cut (Marine buzz cut) the day before my surgery. I didn't even think about hair for a month. But then again, I am a guy.
Later
David
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David,
Happy Birthday.................senior meals at Denny's start at 55 so you've missed five years! Congratulations on what my Mom called her sextieth birthday!
Brenda
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David has me hooked.....I need to read more! And a Happy belated birthday to you David.......
On a depressing note :( My husband was going to take me to a Country Music festival here in Ohio that lasts 4 days this summer.....it was going to be my b-day gift (my 30th b-day gift AGH :() But he is concerned I won't be up for it and wont' enjoy it due to the SSD I will have after surgery......Any opinions on that one?
Thansk to everyone for sharing all of there experiences. I hope to be able to wash my hair as soon as Mary did....And with little ones in the house I surely have baby shampoo already. :)
I'd like to know more about the loss of taste? WHy does that seem to happen? I am a extremely picky eater......so any taste issues afterwards ought to really be interesting.
David, did you have any facial issues prior to surgery?
The carnival ride is really spinning today......We got 4 inches of snow here overnight....and some yet this morning....driving to work this morning in the snow and the dark made for a interesting (carnival) ride, I find I get more dizzy when I am unabel to focus on something.....and with the snow whipping around it was a bit difficult to find that focus, I definetly pulled over a few times to collect my head and wait for the spinnign to pass......hopefully all of this goes away after my surgery.
Have a good day all.....
Melissa....buried in the snow :D
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HI Melissa-
I can offer some antecdotal comments on the SSD/music thing. My dad has been SSD for many years and he still LOVES to go to concerts and listen to music. In fact, listening to music is one of his great joys (as a much younger man, he played a mean trombone in a bee-bop band). He was quick to tell me that SSD has not diminished his ability to enjoy music fully.
I am sure some others will chime in here on that as well. It seems like the music festival might be a great thing to look forward to as you recover.
We seem to have dodged the snow here in NJ - thank goodness!
Deb, still waiting for a date with the knife ;)
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Hey Melissa
Big opinion on the SSD and music thing. Go to the concert! I've had tinnitus and an 82% hearing loss in my AN ear for 23 years (now total SSD) -- and it did not affect the enjoyment of the music at all. You hear all the sound through your good ear. In most concert settings there really is no stereo effect -- so you do hear it all. The only thing that will change is when you listen to stereo music through headsets. One channel is lost on your SSD ear. I went to a concert a few weeks ago. It was great -- although I wear a hearing aid in my good ear and it took some time to adjust it. My experience with SSD meant that I turn my head a bit to listen to someone -- turned it alot for tiny-talkers and mumblers (at least I used to -- I ignore them now), position myself at a table with my good ear toward the conversation, and used it to my advantage to tune out complaining ex's. The one place it is a real annoyance is in the car when you're driving trying to hear a passenger -- and of course tiny-talkers and mumblers are always an annoyance.
Enjoy the concert.
David
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I should be writing for Lost????
OK, we left off when a friend was coming by to take me to the eye doctor on Monday. I came home from the hospital on Friday and hadn't been out all weekend. I stepped out the door of my building and it nailed me -- a painfully blinding flash of light in my AN side eye. I wasn't wearing sunglasses. It was so overwhelming that I was disoriented and didn't know where to step or turn next. That was when I discovered something else. My balance wasn't what I thought it had been. I mis-stepped, stumbled and fell on to the sidewalk. My friend had to help me to the car. That afternoon, I got a cane and wrap around sunglasses. I also discovered something else. I craved a burger. After the eye doc appointment, we stopped at a Carl Jr's. I got a really big burger. Not only was lack of taste an issue, I found something else. I couldn't eat it. With the palsy on one side, I couldn't open my mouth wide enough to eat. And when I tried, I ended up biting my lip or tongue or both. I also discovered that I couldn't drink a Coke through a straw. It didn't have any taste anyway. And neither did the fries that somewhat tasted like salty pieces of something mushy. The frustrations began.
But it wouldn't last long. I was assured of that by the surgeon and the internist when I had my appointments with them later that week. Only a month or two they said. I could deal with that if only that long I guessed. After all it was fun playing pirate -- I added a black patch to my wardrobe for those really bright days. The eye goop was annoying. The lack of taste was annoying. Stumbling around was annoying. The occasional headache was annoying. Being unable to drive was annoying. Loss of words and thought was annoying. But nothing to be concerned about. It would be over at the the end of January. Uh huh.
So Christmas came and I spent a great day with my daughter only I couldn't taste the roast beef dinner -- juicy chewy stuff that tasted like salt. Friends stopped by and would take walks with me around the neighborhood. One great discovery -- my agent (she's Greek) stoped by with some homemade Greek soup -- I could taste it. To this day, Greek food -- especially Dolmades are about all that I can taste. Then on New Years Day I ventured out on my own. I traditionally run a few miles on New Years Day to start the year out right. Not even close. Cane in hand, I made it 4 unsteady swearving blocks. It was an accomplishment. I thought that was the start of something. Then it rained all week. I was cooped up. I also noticed something else, friends had begun drifting away. I was spending more time alone. Even the rides to the doctor dried up. Early in January, I took the bus to the eye doctors -- a true adventure in LA. As the eye doctor was measuring my eyes, it was the first that I sensed something was wrong. He wasn't as positive as he had been on my first visit. Then came the suggestion -- eye surgery -- a tuck on the lower lid and an eye weight on the upper lid. Why do that I thought? I'm going to be "fine" in less than a month. "Hmmm" Dave again hummed to himself. "What could possibly be wrong?" A visit to the internist would answer that.
Later that week and another adveturous bus ride, I met with the internist. He wasn't as smiley as the first visit a week after surgery. He smiled but it was a practiced smile -- sort of like he had news to tell me that wasn't so good that he wanted to make it at least look good. And for a paranoid instant -- it almost looked like an "opps."
Stay tuned till tomorrow when we find out what the "opps" was. And Hope, I'll finish this before next week.
Have a great evening.
David
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I think David should write the next book we use for our AN Book Club!! David, you don't need to be acting out there in LA - you can be writing!! ;D
As far as the concert/music thing - I was concerned too, but when Rick Springfield came to town last month, I couldn't miss that - I didn't care if I had a headache afterwards that lasted a week! (Yes, I know no one knows who Rick Springfield is...). Anyway, I did fine. I did turn off my BAHA to cut down on the background noise though.
Melissa - I'd say go for it - you only turn 30 once - unless you're me - I keep telling everyone I'm 29. I should have turned 30 quite a few times by now if that were true. And if you don't get your fill of country music - come on down to Nashville. there's a little bit of that here from time to time. ;)
Lori
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Melissa and all of my other new friends -
I am fairly new to this site, but my surgery was in 1966. I was 15 at the time. There have been so many new advances in surgery since 1966, it is mind-boggling to read all of the options that are available. I had not heard of most of them until I joined this site.
My experience was quite different than most because of my age and priorities at that age. The loss of my long hair (down to my waist at the time) was very traumatic - they shaved heads back then, even for women - so shampooing was not an issue. To answer another question posted here, they told me that my AN was growing very quickly (possibly my age?) and I was in surgery 2 weeks after diagnosis. I had SSD before the surgery, so I was already used to that part. What was a surprise to the doctors was my eye - believe it or not, they didn't even recognize the fact that my eye wasn't tearing until days (days!!!) after the surgery. It's really a miracle that my eye didn't have major damage.
Fast forward to today - 42 years later. I have minimal facial movement (right side), but unless someone insists on taking a picture of me or I see my reflection in a window, I pretend that there is no problem. Most people are genuinely nice and it's not an issue. The ones that really make me mad are the ones that stare! I try to ignore them.
Precautions for my dry eye - change pillowcase every night to avoid infections; wear sunglasses outside even on overcast days; wear eyeglasses to minimize dust floating in the air; lubricate, lubricate, lubricate! So far, it has paid off.
Lots more to share, but the main reason for the post is to let you know that surgical and other medical advances made in the last 40 years are a huge advantage for you.
I wish you all the best.
Jan D
P.S. David - really enjoy your writing style!
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I think David should write the next book we use for our AN Book Club!!
Great idea, Lori. David, this might just be a new career path for you; after reading the excerpts above, I'd definitely buy the book.
Jan D -
I can't even imagine an AN at age 15, and in 1966? And a totally shaved head? Boy, we've come a long way, haven't we? Thank so much for sharing this with us.
BTW, nice name ;D
Jan B
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ONe thing I've noticed since diagnosed is that my attention span and ability to concentrate is REALLY bad. However... David's story has me fully engaged and I can't wait for the next installment!! David, can you step it up a bit, though - I've run out of reading material.... :D
Debbi - safely inside the house ... for now!
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Jan D,
Thank you for sharing your story. You are an inspiration. I like your writing style also.
David,
Talent, talent, talent!!!! A triple threat, an actor, a t-shirt designer (I'm still waiting for mine) and now a writer. You'll never starve my friend ;D
Anne Marie
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It was a cold Monday in January and a bumpy bus ride to the internists office.
"It could be a year, you know."
He looked at the floor as he said it avoiding my eyes. There was an awkward quiet. No more than two months had become maybe a year. He was in on the allusion with the rest of them. They had all said two months. It was a big "opps." My two month recovery, the palsy, the balance, the taste, the eye, the living on disability, the lonliness, the watching national commercial parts slip away could now last a year. I had another reason for being in his office. My neck had been in terrible pain. He sent me across the street to St Vincents for some XRays. Turned out to be some compressed discs. So I did what any normal person would do -- I went home and pouted. I spent a couple days doing it. Then I got mad and decided to do something about it.
That Wednesday, an acting buddy of mine stopped by and took me over to the foothills above Burbank. We hiked them for about an hour. I still heavily relied on a cane. But I tried something new.
Running. It was after a few steps that I realized the surgeons had forgotten to reattach my brain. It bounced around in my head. Running was not a good idea. Still the hike was good. I felt less helpless. My friend and I decided to hike more. He was an actor and out of work because of the strike and was looking for something to do and his wife who worked couldn't stand the thought of him lounging around the house all day. Then it started to rain again. So much for that idea.
But during the rain, I came across something new and wonderful. It was totally unplanned. No one led me to it. I very accidently found it. It was Monday, a week after the one year news bomb had been dropped on my head. I was sitting at the computer searching through AN sites that would tell me that the doctor was lying and that a one year recovery only happened if your operation lasted eight hours or the patient also had a frontal lobodomy. I knew it couldn't take a year. One of the sites I looked to was the Acountic Neuroma Association. They didn't tell me what I wanted to hear. But I did notice a tab that said "Forum." I clicked on it. And there they were, my new family with advice and support and knowledge and questions and most importantly, caring. I remember reading a post from a guy in Atlanta called Webwrestler. In his first entry he had told of his frustrations with palsy. There were a few suppostive posts in between. Then he was back to tell everyone that after 8 months post op he was feeling zaps and tingling and twitching. He was thrilled and so was I. I wanted to tell him that he was an inspiration so I registered. I wrote my first post. A few moments after that, Phyl welcomed me to the group. Then there was Nancyann and Jan and Deb and there was Tammi who had surgery the same week that I did and we started writing comparing notes. And suddenly I had a new family of friends who knew what I was dealing with and the offered advice and comfort. And I found that I wasn't the only one who was on to the Pirate thing. This board was actually a ship called the Princess Batty Wench and it had a captain and crew. And it didn't take long before I was offering my somewhat limited knowlege to pre-op newbies who came aboard. I also discovered that compared to some other people and what they had been dealing with, I had no reason to sit around feeling sorry for myself. I started following stories and decisions and frustrations and hope. I saw Kay discover Nancyann's T3 and followed her decisions and path to her surgery yesterday. My life had become depressingly lonely at home. All but one or two friends had drifted away. But I looked forward to each morning as I logged on to the board. It did and it still does light up my day.
So with my new family supporting me I was ready to go out and tackle the challenges. The rain finally stopped that week and on Thursday my actor friend and I took on a mountain. We hiked a 3000 ft climb on a four mile course up the Verdugo mountains. We made it to the top. As I stood there overlooking the San Fenando Valley, I knew I could do it. I would recover and it wouldn't take me a year. But the rain started again and with the rain came the lonilness and the boredom and the doubt. Still my new family encouraged me. I walked as much as I could, even in the rain. I met with the eye doctor and set a date for surgery -- thwarted by my insurance company. I took on face exercises and balance exercises in ernest. I talked to my surgeon. He gave me some advice and encouragement. He lso told me something that I hadn't heard before -- if I hadn't seen any improving the first month, it could take six months to a year for recovery. He also assured me that I was doing nothing wrong. The next Thursday, my friend and I hiked another mountain, Rocky Peak, that sat between the Simi Valley and the Santa Clara Valley. That one was even steeper and tougher. I was starting to feel much better. Then that night it happened.
more later. Have a great day.
David
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David -
this is a very riveting story; and I think your writing talent is growing every day :)
We should contact the ANA and ask them to publish it in their next issue of "Notes" - that way those who haven't been fortunate enough to find this forum can read about your experience also.
Can't wait to read what happens next,
Jan
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Aahhhh! David!! You're killing me!!!! I just finished shaking my computer monitor yelling "WHAT HAPPENED NEXT???" Ugh, you Hollywood folks and your cliffhangers... :D
Now seriously, you should write the book and screen play, cast yourself as the main character and hire the rest of us as extras. I could use a vacation in CA. I think the ANA would kick in a few bucks towards this project - then they could sell copies of the DVD to newcomers. I think I should have an extra luxurious trailer for coming up with this idea... ;)
Lori
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Hey thanks for the compliments. And good ideas. But I do have a secret. I am a writer. A vastly unpublished writer. But that's what I spend my free time doing. I act to support my writing habit. I do write published newspaper articles and submit a lot of magazine articles and a couple novels. Bang bang bang (that's me banging my head over submissions). I like the idea of submitting a story to ANA. I will follow that lead. Thank you. And the screenplay we can call "What?"
Here's one of my favorite newspaper articles -- I'm a Pittsburgh boy at heart and this meant a lot to me.
http://www.post-gazette.com/pg/06029/646019.stm
Meanwhile, in answer to Debbie's and Melissa's questions about pre-op lack of balance and facial palsy. I don't know. I think I stated getting psyhcosomatic once I was diagnosed with the tumor and I learned all the symptoms. I started to imagine things. But my daughter noticed that I was taking shorter steps prior to the diagnosis. That may have been related to balance. I did have dizziness. Getting up too fast from lying down -- and especially on an inverted sit-up bench. And here's one somewhat pathetic story. I was murdered on Woman's Murder Club (episode hasn't airred). I spent an afternoon dead on the floor. Couldn't move because of the camera angles and the continuity. In the evening I finally got up and staggered out the door of this mansion right into the swimming pool. Fortunately there was a cover over it but even with the cover, I looked like an out-of-control zombie bouncing and staggering around. It wasn't pretty. That was a year ago. The diagnosis wasn't until September.
Later
David
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Oh yeah, Ann Marie -- about that "I will never starve"...
Unfortunately there is a descriptive word for actors and writers and probably t-shirt desigeners - starving -- as in:
starving artists
starving actors
starving writers (or is that drunken writers?)
I'm afraid I've chosen the starving professions for my second career. At least I'm not trying to pawn off some 100 fat gram, 1000 calorie sandwich on unsuspecting Americans like I did in my first career.
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David - YOU are amazing!! I am totally riveted and totally captivated. And, for only the second time since I've been diagnosed, you brought some tears to my eyes. :'( And, not the bad kind of tears, but the kind that make you feel hopeful. Don't stop writing.
Deb - sniffling a bit in NJ...
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Now seriously, you should write the book and screen play, cast yourself as the main character and hire the rest of us as extras. I could use a vacation in CA. I think the ANA would kick in a few bucks towards this project - then they could sell copies of the DVD to newcomers. I think I should have an extra luxurious trailer for coming up with this idea... ;)
Lori
Ok, if Lori gets the extra luxurious trailer, then I'm going to have to insist that I get two knit hats!
Seriously, David, while I'm a little surprised to see that you are already a published writer, the shoe sure fits you ;D
Thanks for the link to your article about Rocky's; very well-written.
And, yes, please do follow up with the ANA; I'm sure they'd love for you to submit your story.
Jan
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i knew the secret writiing life i told him i think there is a whole story in utah just waiting to be written i think i should get a great disabled trailer!!!
k
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Hi Kay
You're back!!!!!! We've been following your progress through Dave's posts on your blog. How are you feeling? I know the view of that harbor. Beautiful place to recover.
Welcome back.
David
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The Conclusion (so far)
It was March 6th, 6:11PM. I had just returned from a tough hike up Rocky Peak in Simi Valley. I was exhausted but feeling good about the accomplishment. I stood at the kitchen counter and guessing from the time, pouring a glass of wine. At first I wasn't sure if I was imagining things. But it happened again. Very slightly. Just a few subtle tugs. I felt a twitch in the corner of my mouth. They were like tiny spasms. Three months and three days after surgery, I had a twitch. My face was coming back to life. I didn't want to get too excited just yet. I posted a question on the board. I asked about the twitches. I don't remember who it was off hand, but they confirmed that I had real twitches. I told everyone. The non-ANers didn't get it. They rarely do. I think my daughter was the happiest. She wouldn't have to listen to me fret anymore. It was as I earlier posted, time to Twitch and Shout.
Since then there have been more positives. I can move my cheek. I've been able to run a bit more -- even though my brain is still loose in my head. I'm not wearing the moisture chamber. I use eye drops once a day and they aren't the gooey stuff. I don't know if the eye surgery is ever going to happen nor do I know if I will actually need it. Balance is still a bit iffy, but I'm seeing little improvements. And that was what this was all about. Little improvements.
It stared with Melissa asking questions about surgery and recovery (where are you anyway?). And Debbi joined in. And Hope has her date this week. I'm praying that your surgeries go as easy as mine did (without the stretched nerve). But if your recovery is like mine, I just wanted you to know that although others around you will be living your life in episodes, you will be living with recovery day to day -- and the hours and minutes do drag on. It takes patience and faith -- a lot of it. But you will, as the surgeons told me -- be fine -- only on your nerve's timetable. Best wishes to all of you on your upcoming dates (you will get one Debbi).
Now if I could only get my taste back -- a future chapter.
Have a great day
David
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David -
thanks for ending the story; well, sort of ;)
I just wanted to say that you have been making great progress and that I have no doubt, that in time, your taste will return.
Patience,
Jan
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David~
I kind of missed out on the middle & even though i hate to miss your wonderful writing style, I know the story...& I just have to add that yes, you will be OK...it may not be EXCATLY like it was before or you may even have to wait years...but keep looking for those little miracles everyday -- they are there!!
K
PS - yes, i am up @1:3o -- anesthia always does this to me, but at least I didn't throw up!!! ;D I told EVERYONE I get very sick!! Also, I got my weight -- Dr. Byrne thinks I should do a necklace drop, but the other doc thinks I should do a grill for my teeth!!! ;D
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David, I've been a bit under the weather......Cold and sinus stuff on top of my daily dizzies has put me out of commission for a few days.
Such a wonderful riveting story! THanks so much for sharing....I only hope and pray you continue to improve every day.
Lori....I sure do know who Rick Springfield is! I am a lover of all types of music.....I love music from the 60's-80's.....And I think it's great that your still 29! Maybe I'll do the same......just turn 29 again, and again.....
I'm sure I'll attend the music festival to enjoy myself and get away. I'm just so apprehensive to make plans to do things as I'm not sure what I'm going to feel like doing or what my outcome as far as hearing and facial palsy is going to be.....I'm just getting really nervous and there are so many unknowns.....kinda scary as I'm sure you all understand. ANd I'm horrible in the patience department.....except where my kids are concerned.....I am terribly impatient and I just want to get it all over with. It's all just fear of the unknown I guess. My fatigue has been getting me down lately, we've sold our home and we are in the process of moving....so on top of that, and being sick I think that I need a vacation.....maybe a weekend away to relax before the big day. :)
On a seperate note.......for those who have children....Mine are 5 and 2.....My five year old is very sensitive, as my husband calls him a "momma's" boy......and he has overheard my husband and I talking and now has lots of questions about what surgery is.......Any advice on how to break all of this to him and explain it? He's very close to me and he's very sensitive.....so I do worry about he'll feel about everything and how it will affect him.
Thansk all.....Have a wonderful day.
Melissa
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Daydreamer,
Before my surgery, I was contemplating planning a weeklong vacation at the beach with the family. I wasn't sure if I'd feel up to it, but I found it gave me a goal - I didn't want to miss out on a week at the beach, so I made sure to do my exercises and whatever else I could to feel better. It worked!
As far as your little boy - I had a 4 year old and a 9 month old at the time of my surgery. We told the 4 year old that I was going to the doctor to fix a boo-boo in my head and that her aunts would be at the house with her and her little sister to visit and play with them while I was away. I also gave her some "jobs" to do while I was gone - helping her aunts by showing them where we keep things, helping to feed the dog.. just little things. I think that made her feel like she was a big girl for helping me out so much when I wasn't there. I also tried to keep her schedule as normal as possible - getting her to preschool and gymnastics, keeping her usual routine at home as much as possible. She did fine. When she came to visit me at the hospital, she was a little concerned about the big bandage at first, but once she realized it was still me, she was okay. She'd help me take walks down the hall and lay in my hospital bed and watch tv with me.
I think it's normal for kids that age to be apprehensive about it, but my plan was to show her that I wasn't afraid and that I trusted the doctor and that I was going to be fine once my boo boo was better.
The 9 month old, obviously didn't know what was going on - as long as someone changed her diaper and fed her, she was fine with it!
I wouldn't go too into detail about your surgery with your kids. Just keep it at a 5 year old level. They usually prefer to not know the details anyway!
Good luck!!
Lori
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Hi Daydreamer,
I dreaded telling my boys 7 & 9 (my 9-year-old is very sensitve and a worrier like his momma!) I told them the other day and his only concern was who was going to take him to his soccer game (the same day as my surgery) and if they were going to cut my ear off to "fix it", then he went back to playing his video game. It's great to be a kid. They are very resilient. I too worry about everything, most of all the great unknown.
hope
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Hi Hope-
I've been thinking about you all week - hopefully your surgery went well and you are on the road to recovery. When you are up to it, let us all know how you are doing, okay?
Hugs,
Debbi
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Debbi
You got a picture! And a Blog! I will definitely follow your journey. And I, like you, was wondering how Hope was. Has anyone heard from her? According to my calculations, she should be released either today or tomorrow from the hospital.
David
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I'm anxious to hear from Hope also.
Jan
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LA,
Just read your story...the action took place while I was out of town.
As has been stated before me, you have a great writing style.
Also Loved your Rocky's article.. Jan you and I should find a place like it in Chicago for the symposium. Just a down to earth place..
Kate
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Also Loved your Rocky's article.. Jan you and I should find a place like it in Chicago for the symposium. Just a down to earth place..
Kate
Kate -
I don't get around much, especially in "the city" - I'm kind of a suburban girl myself, but I'm game.
I have to warn you though, the last Chicago place I was in that was down to earth was Gino's East about 20-some years ago while I was in college. See, I REALLY don't get around much LOL Although I attended college in Notre Dame, Indiana a few friends and I decided to take a road trip to Chicago one evening and ended up at Gino's. Ah, the wasted days of my youth ;D
My most recent favorite discovery in Chicago is the House of Blues. I chaperoned a field trip a few months ago with my children's sixth grade classrooms and I'm dying to return there with a group of grown ups. It seems like a great place - maybe somewhere to put on our symposium list - I just wonder if the music would be too noisy or too loud for some ???
Jan
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Jan and Kate
My favorite from many years ago -- Chicago Pizza and Oven Grinder in Lincoln Park. I may not make it to Chicago but for those of you who do, great open dish pizza. Great local bar too.
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Jan and Kate
My favorite from many years ago -- Chicago Pizza and Oven Grinder in Lincoln Park. I may not make it to Chicago but for those of you who do, great open dish pizza. Great local bar too.
You are right ! Chicago Deep Dish Pizza is like no other place. Maybe you have a story or two to share from your visits:-) One dark dark summer night....
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Jan,
Gino's East is still a great place:-) Even Twenty years later...House of Blues would be fun too . They also host something very different from other brunches on Sunday mornings. It is called a "Gospel Brunch".
My son just finished school at DePaul and that brought me back to the city on occassion. You are right, once out in the burbs, we kind of hunker out here.
A neat tour is the Chicago Architechtural Tour down the Chicago River. It is relatively speaking inexpensive ($20.00) on the Wendella Boat line. You ride along the river on Wacker Drive and see the Merchandise Mart, The Wrigley Building, the new Trump Tower and sooooo much more.
Then for those liking art, there is the Art Institute, the Contemporary Museum of Art...
There is an off broadway theatre (besides all the big ones) called The Looking Glass Theater (part owner is David Schwimmer from Friends)
On Wednesdays, the city shoots off fireworks by lake..
I hope people have enough time to stay around a couple of days and explore Chicago:-).
Do you know how many people typically attend the conference?
Kate
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Kate -
I've heard the Gospel Brunch at the HOB on Sunday is fantastic. I just did the architectural boat tour this past summer when my brother was here from New Jersey - very interesting. And the Art Institute in September with a friend from out of town. We also managed to find time to stop at the Hershey store near the old water tower - in the DePaul neighbor near Ghiradelli's. You've probably seen it or been there yourself.
I think I've read that the number of people typically attending the symposium is between 300 and 350, but that includes patients, family members, and doctors. Since it's hosted by Northwestern University School of Otolargny (I think that's what they are called) and Dr. Wiet in 2009, there may be more doctors in attendance than usual, but I'm not sure.
Jan
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Did I hear "Hershey's" and "Ghirardelli"?
I'm there! ;D I may never make it to the conference.
Lori
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Lori -
we'll carry out ;D
Jan
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what conference?? I thought that you guys just invited me to Chicago in Aug. of '09 for an Oprah show, beer, a baseball game and chocolate..... ;D
K
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I thought that you guys just invited me to Chicago in Aug. of '09 for an Oprah show, beer, a baseball game and chocolate..... ;D
K
Yeah, that too ;D
Jan
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Don't forget the pizza...
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Right - and the whiskey ;D
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I'll bring you some Jack Daniels from the distillery not far from here. You can have my share.... :P
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Jack Daniels distillery 8) I'm partial to Crown Royal, but I'm not picky.
Hmmm, just another reason to visit Lori. I'll have to mark that down somewhere ;D
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Did someone say "Jack Daniels" !!! hmmmm ... (in my best Homor Simpsons voice) ;D :D
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Jan,
I'll get the Crown Royal at the dutty free. Just let me the size, Texas Mickey just might do the trick!! :P
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Hi David,
I just read all 4 pages of your posts, It was like reading my own story word for word. I am 2 years post mid fossa and just wanted to let you know how much I enjoyed reading your posts. Like you the tastebuds were shot for about a year. The only thing I could taste was chocolate, and in spite of that, lost 20lbs. My eye started to blink after about 8 months, and now it is almost in sync with the good eye. I use drops very rarerly maybe every couple of months. Did you see Dr Michael Roberts at St Vincents? I really liked him. Anyway 2 years on, my balance is still iffy but I haven't let it stop me from living a relatively normal life. I am a cheap drunk now and only need one drink to feel hammered. I can taste everything and gained back the 20lbs. My biggest issue has been the facial stuff. Like you I was told Just 6 weeks, well maybe 3 months, OK a year. I still have diffuculty eating on my bad side and I am trying to retrain myself, it is hard but if you don't you can have bad dental problems. I had to have 3 dental implants put in [ $12.000] I still get facial twitching and the last couple of days I can see things are starting to happen to my smile. Maybe its wishful thinking, but it makes me feel good and I am all for that. A BAHA has helped a lot and as for the friend thing, yes some left, and some I left. I think that your priorities change after AN surgery and I really don't let life's small drama's get me down. I would not wish the AN surgery on anyone, but slowly and I mean very slowly I am starting to like the new me again. Well today anyway.
Unlike you I am not a writer, but can appreciate someone who is. Please keep up the posts.
Lainie.
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Hi Lainie
Thanks for the kind words. I enjoyed writing the posts -- sort of a suspense thing that I knew the outcome -- so far. I'd have to go back to read the last one but I believe it was since then then I develped some synkinesis -- one more thing to deal with -- I drool out of the side of my mouth when I drink and when I'm outside in the sun squinting, people I pass think I'm grinning at them. It's making me believe that my acting career may be soon biting the dust if that doesn't improve. This is like jugling a ball of issues to see which one takes priority.
Yes I am seeing Dr Michael Roberts. He has a true concern for his patients and has actually been the one guiding me through most of this (beside the folks on this forum). He was the one who actually tipped me off to the fact that I could be in this for the long haul. I know you can appreciate the 6 weeks, well 3 months, well, you know this could take a year (Dr Stefan finally said it). This has been my biggest frustration. Had I know it could take a year, I would have made other plans for recovery. Dr Roberts will be doing my eye weights once we work out a schedule for surgery.
Do you still have full palsy? And did your balance come and go? There are days when I'm pretty good. Then there are days like yesterday when I was staggering down Third Street. It makes me feel much better to hear you say you are starting to like the new you. Some ANer somewhere said that the experience changed them from an extrovert into an introvert overnight. I can easily relate and I don't necessarily feel comfortable in my skin lately. I guess I need to get used to the post-AN me. It encourages me to know that there are others who share the feeling.
Again, thanks for writing. My best to you and your recovery. And I will keep up the posts.
David
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And as for the previous posts of Jan, Anne Marie, Lori and Joef....I know I liked you guys. But unlike Lainie -- I am not a cheap drunk -- and I'm a writer -- and I'm mostly Irish -- and I really can't taste anything anyway. As long as it's 80 proof, a big booze works for me. ;)
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Your taste will come back. I'm Hungarian and my husband is Italian now talk about a love affair with food. It depressed to no end not being able to really taste what I was cook. I'd have to call one of my sons or my husband to be the taste taster. I too lost 18lbs but some how its found me!
I find vinegar is still a little hard to handle. My husband is really an expert wine maker. He makes several types of red, white and a zinfandel specially for me. He also made a Demi-jon for my girlfriend. I was so afraid I'd never be able to drink wine again. It was scary!!! Love pina coladas with coconut rum.
Anne Marie
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Hi David, You are the first ANer I have talked to from LA, I live in Redondo Beach. Anyone else out there from the LA area?. I know what you mean about the synkinesis thing, I get it when I eat. My eye sometimes closes when I chew, [ god, I must look so attractive to fellow diners] Eating in Public is not on my list of favorite things. I think restaurants should supply us with a rubber cape and a tool kit. My friends have got used to telling me when I have food on my face. The balance thing comes and goes, sometimes it is great. I find if I am stressed or tired it really gets bad. i have a 2x4 6ft plank of wood that I use for balance that works out well, and it has proved great entertainment at parties after a few glasses of wine, OK in my case 1 glass [actually I can drink 2 now, while still remaining upright. And less of the "Cheap drunk" My husband and I go to the Santa Ynez valley a couple of times a year wine tasting. Unfortunately I have become the Designated driver. Dr Michael Roberts is the best, when you next see him could you give him a message from Elaine Adam "The English Patient'' with the husband who flies for Delta. Please tell him " Go Bruins ". He is a staunch USC fan and we used to tease each other about it. Like you said he has so much concern, I actually miss my visits to him. The Palsy thing again very much depends on stress and tiredness. I do have a crooked smile but I can show most of my teeth, most of my friends say they don't notice it anymore. I didn't think that I was vain until I lost my smile, I think I will always have a confidence problem with it. However it is getting better. I hate when I bump into people I haven't seen for years. I always feel compelled to tell them about " The Elephant in the living room" Its always priceless when you say the dreaded words Brain Tumor, I think we could all clear a room faster that shouting "fire". Anyway I have been Prattling long enough, I am leaving for England Tomorrow and I still need to pack. One last thing David as far as you giving up acting, I have one thing to say MARK RUFFALLO, I go and see all of his movies and you really can't tell he had an AN.
Lainie
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I have one thing to say MARK RUFFALLO, I go and see all of his movies and you really can't tell he had an AN.
Lainie
Yes, but did you know he won't agree to speak at the ANA Symposium? I still can't believe that one :(
Jan
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Jan
I can't believe that. Think of all the good he could do by speaking up. Maybe he thinks he will be known for his AN and not his acting
Too bad.
Lainie.
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Jan
I can't believe that. Think of all the good he could do by speaking up. Maybe he thinks he will be known for his AN and not his acting
Too bad.
Lainie.
Yeah, I couldn't believe it either - found it very disappointing :(
I read it on another post.
Jan
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This is going to sound a bit mercenary -- but when I worked in corporate marketing -- particularly on cause marketing issues -- the causes had to be big, non-controversial, universal, and lacking in something that could be looked on as being undesirable -- particularly diseases. World Peace fits. Boys and Girls Clubs fit. Big Brothers and Big Sisters fit. Revlon knew it's market in Breast Cancer cure. But my guess -- Mark R's handlers didn't think with 3 or 4000 cases a year AN was big enough to get behind and brain tumors do have a certain eeewww stigma. And on the cynical side, maybe his publicity people want him to keep the AN for himself. I know that sounds cynical and all -- but I do work in this business -- that's the way it works and it ain't pretty.
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the causes had to be big, non-controversial, universal, and lacking in something that could be looked on as being undesirable -- particularly diseases.
Hey wait a minute, are you saying that having an AN is looked upon as being undesirable - or as a disease! I'm shocked :o
I just thought we were all very privileged people ;D
Seriously, David thanks for the explanation. I get it - but I am still kind of disappointed :(
Jan
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I guess we should have picked a more desirable ailment. Malaria? The Ebola virus? :D
Lori