ANA Discussion Forum
General Category => AN Issues => Topic started by: MAlegant on July 26, 2008, 06:26:27 am
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Hi all,
4 days post-op and I'm still in somewhat rough shape. I've forgone the percoset for a double dose of Advil hoping that I'll at least be steadier on my feet. I think the muscle relaxant is a placebo however.
Much gratitude to Debbi for keeping everyone posted. Anne Marie, I hope you are doing ok. Any word on Wendy??
Marci
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Good for you Marci! I lived on extra strength Tylenol for a long time. You'll be amazed at how quick the pain disappears! Stay strong..........
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Good morning, Marci! Glad you are able to make the transition to Advil - hopefully that will work. Some of us seem to have more problems with pain after this surgery - hopefully yours will pass soon. If not, you can always take a percoset if it really gets bad!
Meanwhile, take lots of naps and don't forget to eat!
I'm waiting to hear from Rob on Wendy's update. I've got my blackberry with me so I won't miss any updates.
Be well, Marci.
Debbi
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Hi, Marci and welcome to 'postie land'!
You seem to be doing splendidly. I was just getting on my feet (for brief walks in the hospital corridors) at 4 days post-op - and I had a very quick recovery. Getting off the Percocet is a good idea that I hope works out for you. For now, focus on getting stronger and regaining normalcy while doing whatever you have to do to handle any pain, which should be transient .
We're all thinking about you and sending good vibes your way, Marci. Thanks for posting.
Jim
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Marci,
How'd you get home so fast? I'm happy for you, but amazed at how fast this happened.
I understand your tumor was not an acoustic neuroma. Can you explain TRIGEMINAL to me?
Rest well.
Syl
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Marci
I think you are doing amazing! To think you are already home and only 4 days after. I have been told to plan on being in Los Angeles (I live in Denver) for 2-4 weeks. So, I don't even have any expectations to be home as soon as you. Take it easy. Take care of yourself. Enjoy the fact that it is over. I can hardly wait to join you in postie land!
Kathleen
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Marci,
So glad to see that pretty smiling face of yours!!!! I'm doing pretty good myself. I've just had way too much company this week. Yesterday was the killer, we celebrated my husband's birthday. Today I'm doing nothing and DITTO for tonight!
Debbi did such and excellent job keeping us update. Nothing like your own bed eh? I hope the next few days and weeks go just as smoothly for you. When is your first follow up with the Dr?
Rest my friend,
Anne Marie
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Hi Anne Marie, you are a warrior princess from what I can tell. Follow with my doc sometime next week, the sooner the better.
For Syl, a trigeminal schwannoma grows off the 5th cranial nerve. And in the end it was pretty big-3x4 cm. Mine had wrapped itself around the trigeminal nerve. That's nerve gives you sensation on your face. Who knows, I may be able to save money at the dentist office on novacaine. Pain is much better today, though I looking for my "sea legs" which seem to have also gone away.
I'm sorry to say that I'm not a very patient patient.
Am I officially a postie now??
Marci
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Marci
My understanding is you are officially a postie. Being a newbie, tho, I would wait to get confirmation from the veterans. I, however, am going to gladly proclaim postie status as soon as surgery is over on Wednesday. I am glad you are feeling better and getting stronger day by day. You have been an inspiration to me this week before my surgery. In fact the whole team from last week is an inspiration--way to go Anne Marie and way to go Wendy!
All the best,
Kathleen
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Wait, wait, Marci, first we have one more task:
http://stevegerrard.home.comcast.net/applause2_x.wav
Okay, now you are an official postie. :D
Congratulations on getting through so well, by the way.
Steve
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Hi all,
Last night was pretty rough--I think I gave up on Percoset too soon--but this morning seems better. The right side of my face is still mighty numb but I'm still smiling! :D
With a little more clarity today I just wanted say yet again to all, thank you, because being a part of this group has given me strength I didn't know I had. Now if I could just wash my hair....
Marci
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Hi Marci-
Ah, the hair washing... when are you able to get that first wonderful shampoo?
Sorry you had a rough night. It may be that you will need something stronger than advil in the evenings. I find, even now, that the pain escalates later in the day. I hope you can find the "happy medium" that works best for you.
sending you hugs,
Debbi
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Had my hair washed this morning and had my husband hold plastic wrap over my sutures. We kept it pretty dry. It's amazing how small things can make such a big difference. Tonight I will switch to Percoset earlier for sure. At least I got a decent night's sleep.
Now if I could just feel my face....
M
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Enjoy your clean hair, Marci! That was one of my post surgical highlights, for sure. By the way, Glad Press 'n' Seal works great for covering any kinds of sutures or holes in the body.
Take it easy, and listen to your body.
BTW, I just posted some pics on Wendy's thread - she looks great!
hugs,
Debbi
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:D Hi Marci,
Did they give you a new "DO" in the surgical suite? My Dr told me at my pre-op he won't be cutting my hair........WRONG he buzzed me all right. Thank goodness I have lots of hair!!
I'm so glad you enjoyed your first hair wash, for me it was divine.
If you need to nap later today do so. This entire weekend I've been in and out of sleep. Listen to your body. Sleep is part of the healing process.
Keep smiling my surgery sister! ;D
Ane Marie
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Hi all,
For Anne Marie--yes, they shaved a neat vertical one-inch path behind my ear, down to the nape of my neck. I have a really cool scar, though!
Today is day 6 and I feel about the same as yesterday, maybe a little worse. Weaker, dizzier, a bit more pain but I had a much better night so maybe it's a trade-off. I am ready to resume my life now, why isn't my body cooperating? How type-A is that?
Marci
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Patience, Marci, patience! It's really hard for people like us to be patient with our bodies during the healing process. All I can say is that you really have to listen to your body and give it what it demands. As for the patience, I'm still trying to learn that one... ;)
Debbi
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congrats marci,sounds as if everything worked out great.
so you still have facial animation,does your eye blink and close ?
the whole dizzy, tired thing will pass,hang in there. congrats!
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Marci--
Wow, you made it home in record time! Glad you are safely through (and yes, officially a postie!), though sorry you are still experiencing discomfort. For me, the second week got a whole lot easier, but then the third was horrible! (Partially that was because I had a doozy of an asthma attack that took several days to even recognize as such, but it was also because I was pushing myself too hard and my body was in major rebellion. So, like others here, I will counsel...be very very patient! Get lots of rest! Be very gentle with yourself!)
Re the yukky hair dilemma--I'm glad you were able to shampoo; you must be feeling a million times better. I didn't shampoo for two weeks, as per my doc's instructions, but I did use a dry shampoo on the front part of my hair (far far away from my incision), without which the wait to suds up would have been unbearable...
Hope every day finds you a little stronger...
Carrie
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marci~
I will tell you what I tell everyone: Always remember as you heal and feel better that it is OK to have the occasional "bad day" and listen to your body - don't push it!!
Sounds like you are doing great!
K
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Hi, Marci:
Don't apologize. I was the exact same way when I got home from the hospital. I wanted to be 'good as new' immediately, if not sooner. I did push it a bit but with no adverse consequences. I can't advise you to do that but I understand why you might want to.
I was driving within 2 weeks of my surgery (with my doctor's permission, of course). I was doing routine stuff (walking, shopping) within 3 weeks and never looked back. Sure, I got tired, but I just went to bed a little earlier and slept a little later (being retired without small children to watch has it's benefits). :)
Your recovery is impressive and I think you're going to come out of this just fine.
Jim
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Thanks for the encouragement gang. I will try to be patient (write one hundred times on chalkboard) because I know it's actually the best route to recovery. Satman, my face (right side) is numb but is still smiling and blinking, though my right eye is very watery, tmi? Also, watching me eat is entertaining since I can't feel my chin or bottom lip and therefore can't feel food when it falls, which it does. Very amusing. Carrie, the shampoo was an adventure that entailed me washing with my husband holding saran wrap around the incision. He says he can't take that kind of pressure so next I will just wash the front of my hair and wait for doc's ok for the whole head thing. Did listen to my body today and took a two hour nap which seemed to really help. I have also been walking around the house but still feel uneasy about going outside. Carrie, how are you doing?? And since mine was a trigeminal neuroma do I have to leave the group? Or do I get voted off the island?
M
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no getting kicked off here,you are a lifer!
i'm so happy to hear all the pos news,you are doing awesome.
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Yeah as satman states, "You're a lifer!", sorry you're stuck with us for better or worse! Glad you are slowly improving and as kaybo says we all have good days and bad it's how we react to them that matters now. Go with the flow, do get outside with a friend for walks to help with balance, fresh air does good too. Slow and steady as she goes, peace!
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I did take a walk this morning (husband at my side), incision shielded from the sun, and it felt so good. Not as good as running a few miles, but getting back to that is of course, my goal. Today is one week since surgery and I feel pretty good this morning, no pain, just an annoying whooshing sound in my head. Guess those little voices have become a chorus. :D
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Know it must have been great to get outside for a walk - wonderful that you are able to do that and so soon after your surgery! Glad the pain seems better, hope the dizziness is subsiding as well. You give great hope for others awaiting their treatment :)
Cindy
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You are WELL on your way! I didn't get out of the house for several weeks post-surgery, so you are doing very well in my eyes (even the one that doesn't blink all the way yet ;) ). Congrats on doing so well. Give it time and patience and all will be well.
Brian
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Marci,
Having patience during the recovery process is one of the most difficult during this journey. I think having patience and taking it easy is the second hardest thing, making a treatment decision is number 1 for me.
It sounds like you are doing GREAT. I'm sure getting outside helped mentally and emotionally also for you. I just hate being stuck in the house. I get so stir crazy.
I was ready to try to pick up some shifts at my waitress job this week but after double checking with my doctors it looks like I have to postpone that some more because they both said I can't lift anything heavy for 8 weeks. I don't know if I can wait that long, but then again I don't want to do anything that it interfere with my recovery.
Take it easy.
Julie
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Ok, I think I see how this works. 10 minutes outside walking is equal to 2 hours of napping. They shouldn't call this napping, they should call it "deep sleep so your body can heal from what you've done to it" sleeping. What say you veterans?
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Hey Marci
I'm glad to hear your doing well......WHAT A TROOPER!!!!!! :D
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Now you've got it.. Fatigue is definitely a factor for awhile. You are doing great!
Brian
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Marci -
never underestimate the power of fatigue ;)
It hangs around for quite awhile post op.
And, no, we will NOT be voting you off the island!
You're here to stay! :)
Jan
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Hey all,
Went to the doctor's--they took out the stitches and gave me the green light to do whatever whenever I feel up to it. One interesting fact--I asked about the "whooshing" sound inside my head and the nurse said it was probably CS fluid sloshing around. I thought that was pretty cool. All this time I thought it was the voices inside my head speaking as one. Who knew? I am pretty tired from the trip so I think a nap is in order.
M
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Have a good nap, Marci! Naps are a valuable part of post surgical life, as many here will attest to! I still sleep alot, compared to the pre-surgical me - last night I slept 10 hours, but today I feel great! There's a message in there, isn't there?
Rest up, Marci.
Debbi
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Hey Marci! Sounds like you are doing great. Docs told me 1 week recup for every hour of surgery...in other words you'll be needing a nap for awhile. Let your body rest and heal.......
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Marci:
Fatigue was one of the few issues I had, post-op. The fatigue resolved within a few weeks. Of course, I missed a lot as I was napping fairly frequently during that time. I still don't have quite the stamina I once had but then, I'm much older than you. :)
Jim
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I took another nice walk today--but still can't seem to sleep through the night without waking up with a headache. I wonder if it's pressure from my head being down? I have no pain during the day, it's totally bizarre. Also, the eye on my numb side is really dry and irritated and then after a while tears. Blinks just fine, but is pretty uncomfortable. I've read a lot on this forum about eye gel/drops but thought if your eye blinked you wouldn't have that problem. Not so! Any suggestions? Marci
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Marci,
Dry eye can be a problem even with a blink. A family member of mine had Lasik surgery (no AN or facial nerve issues) and has suffered from a severely dry eye ever since. Protect your eye if you feel it is dry by using eye drops or ointment. If it is bothering you, it might not be a bad idea to see an ophthalmologist who can make sure nothing else is going on.
I also woke up with headaches for a while post op. Have you tried sleeping with your head elevated?
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Debbie is totally right - the eye can still not be making enough tears even if it blinks. Make sure you keep it well lubricated with drops (I personnaly recommend the "single use" kind because they don't irritate your eyes the way some of the ones with preservatives can.) And, seeing an opthalmologist is also a good idea. You want to be very careful not to dry your cornea out. The good news is that you probalby won't need the "industrial strengh" gels that some of us use!
Be patient with the fatigue - hopefully it will start subsiding, but be careful not to overdue. Can you try elevating your head at night to see if that helps with the pain? Maybe it would releive some of the pressure?
Feel better!
Debbi
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I think I've got it--elevate and lubricate! :D Now sending Brian to the drug store to get drops....
Marci
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I actually tried singing a bit today and it was very strange. It was so LOUD inside my head that I had to stop. And laugh. The dogs were also howling but they always do that. I wonder (and will ask the doctor on Tuesday) if the fact that the neuroma was abutting the auditory canal means that it was affecting how I heard myself. It would explain oh so much....
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I am just so tired tonight - think I can still plead the need for a nap 12 YEARS out??? ???
K
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Marci
You make surgey sound so easy......
I'm so happy your are doing well!!!!!!!!!!!! ;D
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A good night's sleep! Yay! Extra pillows kept my head elevated and I woke without a headache. I know, it's a small victory, but it has made my day!! Also, the eye drops allowed me to watch an entire movie with my husband last night. Happy, happy, happy!
I started a thread on scar care, please feel free to jump in and advise.
Marci
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Hey Marci,
was just looking for your update thread. Sorry I'm late getting to this.... but.... I'm glad to hear you are doing well! Hang in there.... day by day, inch by inch... and wellness wishes right to ya! :)
You postie :)
Phyl
(btw, what movie did you watch?)
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Hi Phyl,
We watched "the band's visit" a quirky arab/israeli film about an Egyptian police band that gets stuck in the wrong town in Israel--not where they are supposed to play--and they stay overnight. It was really charming but only if you like subtle, charming movies. You know, no gratuitous sex or violence. Rotten Tomatoes gave it a 98%.
M
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Marci~
Glad you got a good night's rest and NO headache! And the movie was a plus too!
Have a good day!
K
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Marci,
I envy you! How'd you manage a nap and a good night's rest so soon after surgery? I'm still having trouble taking naps. I can get one in there about once a week. And, it wasn't until this past Wednesday (6 wks post-op) that I managed to get 7 hrs of uninterrupted sleep.
Syl
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Hi Syl,
Don't know why my recovery is headed in this direction, just lucky I think. The only thing I can think of is that I was in very good physical shape going into this and had increased my running in the weeks prior to surgery. I felt as if I was training for a marathon, except the marathon was surgery. An even bigger factor is that they did not cut my vestibular nerve, so I have no balance problems, just lots of fatigue. Still working though other issues but they aren't so bad. We all get to the finish line eventually anyway. Wishing YOU restful sleep and oh by the way, YAY on your hearing!
M
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Even though it was a good night's sleep I was still up at 4am. Just not in great pain for the first time. I was beginning to fear going to sleep. I think it will be quite a while until I sleep through the night.
M
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I hope the elevated head continues to help you with pain and as for the waking early--don't give it the time of day, find it within yourself to surrender to the early a.m. waking. With time this too will go by the wayside and I pray the pain dissipates.
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To all,
I must share this with you, it's a quote that a friend sent me along with his get well wishes. It resonates even if you aren't religious. Marci
It is in the quiet crucible of your personal, private sufferings that your noblest dreams are born; and God’s greatest gifts are given in compensation for what you’ve been through.
-- Wintley Phipps
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To all,
I must share this with you, it's a quote that a friend sent me along with his get well wishes. It resonates even if you aren't religious. Marci
It is in the quiet crucible of your personal, private sufferings that your noblest dreams are born; and God’s greatest gifts are given in compensation for what you’ve been through.
-- Wintley Phipps
Marci,
Me likes that quote! Thank you for sharing it! :) Hoping today is a better day than all yesterday's... and all tomorrow's bring even more wellness. Hang tough!
Phyl
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Hi all,
How can my face itch when I can't really feel it? What is itching? And since I can't feel it, I can't scratch it. And this is making me crazy! I did walk about a mile this morning without holding on to my husband, though he was at my side. At one point I think he was just trying to keep up with me. (Not that I'm in a hurry or anything.)
Marci
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So this was my second consecutive night without waking up! Yippee! I was beginning to feel like I should have a newborn in the house, or at the very least, a puppy. I walked two miles this morning (slowly, very slowly) because the weather is so beautiful now. When you live in the midwest, sunny days with low humidity are prized. I know I will "pay" for this with fatigue that is sure to get me by late afternoon but it's a trade-off I gladly make.
Kathleen and Wendy, I hope you are moving right along with recovery. And I wish everyone a happy Sunday. Hope you can rest, read the paper or play softball, whatever your bliss.
Marci
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Great news Marci!
The weather is really nice today in Southern Ontario!! Its so glorious...I dread the winter :'(
Remember to rest my friend. I still nap in the afternoon when need be. I'm almost 2 yrs post op Translab, but I think this last surgery did me in, I know it was my nerves. I'm recovering but I still get vicious headaches .
Keep smiling my surgery sister ;D
Anne Marie
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Anne Marie,
Have already had one nap today. :) Hopefully you'll be well again soon. I cannot imagine going through this again and so give you plenty of kudos for your courage and fortitude. Remember, according the doctors we are "young"! (A fact I thought was very amusing) and will bounce back. I hope at least you have good drugs for the headaches. Do they expect that the frequency of headaches will improve now?
I remember (not fondly) the harshness of winter in Montreal and understand completely how precious the nice weather can be. Enjoy.
Best,
Marci
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A milestone! Brian asked me if I wanted to vacuum! ;D You can guess my reply.....
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Hi Marci
That is good that all the doctors think we're young. I'll buy into that even if I don't feel it at the moment. As far as sleep and naps are concerned -- at eight months post, I still have nap attacks. And my sleep patterns still aren't regular -- of course that could be due to obnoxiously loud upstairs neighbors who believe it is critical to play soccer on a hardwood floor at 3 am. *note to self -- objective is to live on the top floor*.
Actually the reason I am responding -- have you tried running yet -- even at a shuffle pace? Don't be concerned if it feels like someone forgot to attach your brain to brain attachment places. When I first tried running -- all six or seven steps -- it felt like my brain was banging around in my skull. That was in February. Last week, eight months post surgery, with my daughter by my side to steady me, I ran 7 miles. Granted it wasn't much of a blazing pace and most of the time I had to concentrate on not falling over, but at least my brain seemed happy somewhere inside my skull. We're still working on that October Half Marathon.
And Anne Marie -- what a different perspective -- although this summer has for the most part been pleasant -- I can't wait for the 60 degrees of LA temps in the winter.
I am sure there has to be the perfect climate on Earth. I'm also sure that none of us could afford to live there.
David
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Hi David,
Yeah, I'll take those young comments anytime. Haven't tried running yet. I am working up to it by walking my short running loop (first time today). Once I can do that comfortably I'll give running a go. After 27 years of running it's so much a part of me that I'm becoming depressed not doing it. The neurologist asked me to wait another week or so and I think that's about when I'll feel up to it. I'll remember what you said, as I am sure that my brain will think me insane and my head will be wonky. But for me it will mark the beginning of the new normal, which includes facial numbness and very strange hearing in my right ear. Tinnitus I think but I'll let the doctor diagnose me. I did try singing a couple of days ago and it made feel nauseous. Which is pretty funny all things considered. It was so very LOUD in my head that it hurt. I may wait a couple of weeks on that one as well. I am having to learn patience. I am not very good at it. How was your appt.? Weren't you going in to get checked out??
Best,
Marci
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I am sure there has to be the perfect climate on Earth. I'm also sure that none of us could afford to live there.
Well, when Lori and I make those millions on all our AN ideas - and the ideas we've stolen (er, I mean, borrowed) from our fellow forumites - we're going to find such a place.
Don't worry, David, we'll invite you - and many, many others ;)
Jan
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Hey Marci
Come to think of it. I haven't tried singing since surgery. Think I'll concentrate on the running for the time being. Meanwhile, don't know if I mentioned this, some of the best memories of my kidhood were soft-ice cream cones in Chagrin Falls with my grandfather, the Terminal Tower (circa the 50's), and Cedar Point in the 50s and 60s. Magic memories.
And Jan, thanks for the invite. Right now, anywhere out of California would be wonderful. Sometimes ya just don't appreciate the good things until ya had the chance to experience the bad things.
David
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David~
Come to Texas and the 100+ heat...LOVE to have you! Actually, where I live, it cools off VERY nicely in the evenings...
K *waiting for SOMEONE to take me up on a visit!*
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All,
Followed up with my doctor today and all is well. He won't check my hearing for three months but otherwise is hopeful that some if not most of things I'm experiencing with the right ear and facial numbness will resolve. They are very pleased with my recovery (reminded me that the tumor was huge and that had it grown it would have caused serious problems) and encouraged me to be patient. I have to give it up to a year to see what is permanent but I can start running again in another week. That made me extremely happy.
Wendy-I went out to lunch with my husband and kept most of the food in my mouth so I was pleased with that. What's that about small victories?
And for those of you who live in Northeast Ohio I will be attempting to start a support group as soon as I can. They are sending me a packet of information then we'll be on our way. The ANA said that there were over 50 folks in the area but at the rate the newbies are joining I'm betting the number is even higher. I'm sorry the number isn't smaller.
Big day, must nap.
Marci
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Hi, Marci:
Thanks for sharing the good news from your doctor regarding the eventual resolution of your current facial nerve issues.
Your doctor's permission for you to resume running is certainly a very good indication that, even if everything isn't 'perfect', you're getting back to normal.
Kudos for your interest in starting a local AN support group in your area. Dedication to helping other AN patients and the willingness to put in the work and time needed to organize a support group is commendable. I admire your enthusiasm and positive attitude.
Just remember not to try to be 'SuperWoman' and do too much. Your recovery is advancing nicely and I wouldn't want to see any setbacks occur due to overexertion. I salute you for your commitment and upbeat nature, Marci.
Jim
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Woo woo! You are moving right along good! Keep it up and you will be "back" before you know it! I realize you have a few issues that may take longer than others, as do I, but for being so soon after surgery and doing so well, you are doing great! Here's to small victories (I've had a few recently too!).. :)
Brian
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Yes, I shall try to keep it at a reasonable pace. The one concession I've made is not to go back to work too soon (I have a great job, but it's totally insane, very busy, stressful, etc.,.) I will not go back full-time until September 15 and will go back only for a couple of hours a day starting Sept. 4. I am very fortunate that I can be flexible with it and have great colleagues who are covering for me, like Andrea. Of the many lessons I've learned lately, one is "it's just a job" and though I love it, my health and my family need to come first. Too bad it took a tumor for me to figure that out but better late than never, right?
Starting a support group will be a joy for me. If I can help even one person on this journey it will mean a lot to me. Having all of you helped me to be centered, calm and rational at a time in my life that I needed it most. And allows me a place to be zany, whiny and accepted. It's like family, only better, much better.
I haven't heard an update from rsteph (surgery today) but as soon as I do, I will post something. Also, David, anytime you want to visit Chagrin Falls or any of your Cleveland haunts, let me know. The guest room awaits...
Marci
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Marci -
glad to hear your doctor visit went well. Also glad to hear that you are going ahead with the Ohio support group. The ANA is lucky to have you :)
K -
I've been dying to visit Texas - but I think I'll wait until it cools off - a lot! My brother used to live in Dallas and although I kept saying I'd visit, I never got around to it. He also lived in North Carolina and I never got there either. But, as you can see, I have a lot of good intentions ::)
David -
you're welcome in Illinois anytime! The kids and I are still living in the "box" - it isn't sold yet and I don't think it will sell in the short term. The realtor tells me there are 74 foreclosures in my town :o and since I am not one of them, I don't think there will be much interest in my house for awhile. The foreclosed properties are all going real cheap - just have to pay off the bank!
Interesting you should mention Chagrin Falls. My best friend from college, who now lives outside of Boston, grew up in Chagrin Falls! Did you live there? or did your grandfather?
Jan
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Wednesday, I went out again for more errands (also walked 2 miles) and think I have found my current limit. Extreme fatigue has set in so my husband tells me I'm grounded today--no running errands, no visitors, a day of rest and reading. Yes, Jim, you were right, I was pushing too hard. I will take it easy and then try to be more attuned to what I can and can't do yet. I blame this all on being a "baby boomer". It's not my fault, it's generational.
(Writing 100 times, I will be patient, I will, I really will.)
Marci
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Marci:
Sorry to learn you're feeling fatigued but I feel better knowing you have a caring, involved husband who will 'ground' you, if necessary.
I just miss the baby boomer birth year time-frame the demographers and sociologists use (1946 -1964) but I share the impatience and I can empathize with yours. However, a day of rest and more responsiveness to your body's signals regarding rest and energy in the future will likely offer you the reward of a more rapid recuperation, which is always the ultimate goal. Basically, you're doing fine. :)
Jim
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Marci -
You sound so wonderful and seem to be having a remarkable recovery. It's good to hear you sound so upbeat and positive, especially when you sounded so frightened when you first joined our forum. It's amazing how much you life can change for the better in such a short time. I tried singing fir the first time on Sunday, August 3 since it was my daughter's birthday. The doctor told me he thought I would be able to carry a tune even though I'm SSD but he was wrong -- I'm still tone-deaf, ha ha! I'm just being silly of course -- sometimes I just cant' help myself. I hope you continue to have a great recovery and congrats on being able to run again soon. I'm not a runner myself, but I was walking between 7 and 8 miles a day for a month before surgery. I'm hoping my physical therapy will allow me to get back to that soon too.
Best wishes,
Wendy
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Thanks Jim and Wendy,
Your words really help. And Wendy, I thought you were winning the prize (whatever that is) for stunning recovery? ;D
Marci
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Hi Marci -
There's a prize involved? Whatever could it be??? I've never won anything before!! I'm so excited!!!
Wendy
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A lifetime supply of MRI's?? :D
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Forumites,
I started a new thread on depression, because on my road to recovery, this seems to be the latest bump. I'm hanging in there and seeing a therapist on Tuesday. I figure it can't hurt. I just returned from a beautiful walk with husband and dogs, my usual three mile running loop, but only walked. I think it will be a couple of weeks before I run. Even though the doctors gave me the green light I can't get over the feeling that I will shake something loose up there so am still a little nervous. I piled pillows on my AN side so I wouldn't roll onto it last night and it worked. I still woke up with that "what is wrong with my head" feeling. Will I always have that? Is it just a by-product of brain surgery? Also facial weakness is back, but very minor. I had some immediately after surgery but it went away. Everything is working but my eyebrow won't quite raise as much as the other and comes down before I want it to. Also can't whistle. My smile is still symmetrical so it must be a very slight weakness. I also realized that for some bizarre reason I thought I was 3 weeks post-op but my husband pointed out that it won't be 3 weeks until Tuesday. Am I losing my mind? Or is the calendar just losing its meaning?
Happy Saturday to you,
Marci
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Marci,
I never through of a lifetime of MRIs being a prize but that certainly puts a positive spin on it. I have replied to your thread on depression there. I hope it helps at least a little
Sending you a big hug,
Wendy
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A lifetime supply of eye drops! Now that would be a prize!!! ;)
Lori
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Marci:
My perception is that you seem to be doing fairly well with your recovery but are holding back a bit due to some vague feeling that you aren't 'whole' as yet. That is not uncommon. You had major brain surgery. That is serious as well as invasive and requires some adjustment in our way of thinking, afterward. Usually, even without any post-op complications, our self-image is skewed. For some, they view themselves as near-invalids, 'damaged goods', as it were, and act that way even when their recovery is actually quite good. For others, they dwell on their every deficiency, real or imagined, small or large, and sometimes become sad and depressed, even when they're physically doing pretty well. Some just can't get past the fact that they aren't completely the same as before their surgery and feel deprived and depressed, when they don't need to be. These are all parts of the same basic template I've noticed from the thousands of posts I've read here over the past 15 months. I've written a few, too.
Granted, I had a good recovery. However, I embraced it and ran with it so I can't relate in a totally empathetic way but I do recognize the manifestations of the various post-op despondencies some AN patients endure, sometimes unnecessarily. Of course there are a variety of factors that can negatively affect the psyche of someone recovering from AN surgery, including other, non-AN-related physical problems, too much pressure or not enough help and sympathy from a spouse and children or even a distorted self-image that sees a different person in the mirror and doesn't like what they see. Remember, I'm characterizing post-op AN patients with few or no real complications, such as facial paralysis and all the other problems that condition can bring. Those folks have their own set of self-esteem issues but often recover at a better pace and with fewer psychological issues that those who really have very minor or temporary post-op problems. Go figure.
I'm certainly not a psychiatrist or any kind of councilor, just another AN post-op patient, but I rather doubt you're in a mental depression, Marci. A bit discouraged and wary of testing your physical abilities that relate to your AN and the surgery, no doubt, but no more than that. However, I'll await the comments of the therapist you're seeing on Tuesday, who actually has some credibility with analyzing these things. Meanwhile, I wish you all good things and a contunued solid recovery. :)
Jim
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Thanks Jim--what a terrific response. Are you SURE you're not a doctor/therapist/oracle? :D
Best,
Marci
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Thanks Jim--what a terrific response. Are you SURE you're not a doctor/therapist/oracle? :D
I merely note that while Jim scrupulously points out that he is neither a doctor nor a therapist, he has never once denied being an oracle. I think his true identity, and his mythological Greek heritage, have finally been ferreted out. :D
Steve
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Steve,
You always make me laugh ;D and that's almost as good as being an oracle.
Marci
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Hey, Marci - just wanted to check in and wish you a good visit with your therapist on Tuesday. I think you'll find that the emotions you are experiencing are pretty "normal", but it is still good to talk to a professional. And, of course, as you already know - you've got lots of friends here who know exactly how you're feeling!
Hugs to you,
Debbi
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. I think his true identity, and his mythological Greek heritage, have finally been ferreted out. :D
That would explain why most of his vocabulary is Greek to me! :D
Ha ha - just poking fun, Jim!
Lori
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I merely note that while Jim scrupulously points out that he is neither a doctor nor a therapist, he has never once denied being an oracle. I think his true identity, and his mythological Greek heritage, have finally been ferreted out. :D
Steve
Well, in my youth, my more literary-minded friends (with some knowledge of Greek mythology) used to call me 'Apollo' but I think they meant it in a derogatory way. ;) Besides, I never lived in Delphi.
Jim
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Jim, you are busted. Oh great and might one...
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Also posted on a separate thread, but thought maybe it should be here. Am I excited or what?
I know this might not seem like too much, but since most of the right side of my face is numb (except for my upper lip) it seems like a lot to me. A smaller-than-a-dime spot on my lower lip has feeling! Yay! Now I almost have 4 working lip quadrants!!! ;D
Marci
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Marci -
You have every right to be excited! What good news! Let's hope that not-quite-10-cent-spot turns into a quarter very soon!
Lori - still only 2 working quadrants, but that doesn't stop me from talking! :D
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Hi friends,
Today I have a meeting at work. It's my first appearance back in the office and I'm a little worried that I won't be able to form compound sentences. I've mostly been watching the Olympics and surfing the web. Mentally I think I'm ok, except for some short term memory issues, but I'm going. Will let you know if the "new" me is just as impatient in meetings as the old me was. I plan on taking my notebook and leaning on my notes as much as necessary. Anxiety level on a scale of 1 to 10; this one is an 8.
M
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An addendum to the last post: this morning I ran for the first time! I walked more than I ran, but at least I've gotten started. I am doing the happy run/dance! ;D ;D ;D ;D
Marci
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Marci:
As one of many who has followed your AN journey through your messages on these forums I certainly will be thinking of and praying for you, today, as you make an appearance at work. Your run/walk sounds promising and demonstrates, again, that you're well on the way to a full recovery. Just stay strong and positive. Decide to return to normalcy and ignore or go around any obstacles in your way. You can do this Marci and I look forward to reading more on your continued progress. Have a great day! :)
Jim
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Hi Marci-
I can totally relate to the anxiety!
Dont' be surprised if you end up being everyone's hero, btw ... You're our hero~!
Deb
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Awww, thanks Debbi. :-*
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Super-Duper Marci!!
Way to Go! Good Luck at the meeting today - I know you'll be the belle of the ball!! Just know you will probably be exhausted tomorrow &/or the next day since you ran AND did a meeting today!!
;D
K
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Uh, Kay, do I have to wait until tomorrow to be exhausted? Because after a 3 hour meeting (totally normal for this job) I am really tired. All I did was sit in a chair. I didn't run the meeting, I just participated. Ok, well, I talked a lot. Which is NORMAL!!!
Off to happy nap land, and getting sort of kind of back to work!
Marci
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Last night, big party at my house. Brian and friends did all the work and I was able to just hang out (actually had a drink!) with the people I love. Today I feel beaten up but it's worth it.
Wish you all could have been there; it would have been perfect!
Marci
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Ok, just returned from a visit to my mom in Florida. She hadn't seen me and just wanted to be sure I was alive. I did well on the way out, my head did not explode on the plane, and I didn't even feel tired. On Saturday I ran/walked a little more than usual (in the air conditioned gym) and then went with my mom to get a haircut. By dinnertime I was sick, sick, sick. Headache (shooting pains on the AN side) nausea, upset stomach. Felt awful coming home today (you should have seen me try to negotiate the moving walkway at the airport :P) but now that I'm home on my sofa I'm much better. So, once more I have found my limit and though it is better, I still need to remind myself not to overdo.
Marci (the intrepid traveler)
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Hey Marci,
Sounds like your trip was both good and bad. Sure it was comforting for your mom to see you and you her, but sorry you got so sick. Guess your body was giving you the reminder that you did just have major surgery! Glad you felt better upon getting back on your own turf/couch.
Did you see any flooding while in Florida?
Take it easy...
Cindy
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Hi Cindy,
No flooding where I was--in Boynton Beach--but I know it's been a problem there. Yes, happy to be home and near a sofa I know well so when I need to pass out I don't have far to go.
Best,
M
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Hi Marci-
Wow - I'm impressed! You are a warrior, girl! Sorry that your body had to remind you so forcibly where the current boundaries are, but glad you got to see your mom. And, yes, it is so nice to be back in your own surroundings, isn't it?
Deb
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Hi Marci -
It sounds like your trip was mostly good and I'm sure it was great to see your mom. Our bodies do have a way of striking back when we overdo it I went to the beach the other day and fell asleep almost as soon as I sat in the car slept all the way home (abotu another 1 1/2 hours)and then slept another 10 hours Saturday night. Luckily for me that seemed to do the trick, but I did take it easier on Sunday. Hope your feeling back to normal (whatever that is for now).
Bet wishes,
Wendy
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Yes, the new normal. This now includes spilling drinks on myself because I can't feel my lips. This was a slight problem at a meeting but i don't think too many people noticed. Yes, I went to another meeting at work today but just for part of it. They are letting me lurk until September 15.
Marci (back on the sofa)
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Now that's my kinda meeting if they let you drink! ;)
Oh, wait... you meant coffee or something, didn't you? Darn. I was all set to apply for a job.
Lori
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Lori and everyone,
Yes, it was only water, I wasn't brave enough to try coffee in public. It was pretty funny though.
On Wednesday I have to speak to about 700 people. I do this every year during new student/parent orientation and normally I love it but this year I'm panicked. What if I slur my speech? Spit on the microphone? Trip on my way to/from the podium? Will they all think I'm drunk? And is that such a bad thing? Stay tuned...
Marci
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Well, if you do any of those things, I'm sure they'll never forget you! ;D
Lori
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Marci~
You could always start by saying, "You might have to bear with me as I just had BRAIN SURGERY..." that would get their attention, but then again they might not really hear whatever else you have to say and I am sure it is important!! ;D
K
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Hi Kay,
Now there's a thought!!
M
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Survived the public speaking, didn't spit, trip, or drool. Did have to work mighty hard to speak clearly, but at least that's over...now to pack the kid up for college!
M
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Phew.. I'll bet you're glad that's over. I'm sure it will only get easier from here on in. The speaking part, maybe not the college send off part!
Hooray for you!!!!!
Lori
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Yahoo, Marci!! So proud of you!
Debbi
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Hi all,
Just returned from a grueling trip to Boston (drove up and flew back) to drop my baby boy at his new apartment. Although I wasn't much help driving or moving, I WAS THERE! And that was a goal for me post-op, one I wasn't sure I'd achieve. I know my son appreciated me being there and besides, if it weren't for me, my husband and son would have killed each other. We went out to dinner twice and I only had minor mishaps (face is still numb), but other than spilling food and drink on myself I came through unscathed. I was horrified that I misread the driving directions and got us lost; I'm usually the navigator, but the boys were forgiving.
Tomorrow I begin half-days at work. I hope I can still do my job. I am bothered by the "lost word" syndrome but will try to improvise. At least I don't need a map to find my office. Stay tuned..
Marci
ps: after just 6 weeks my scar is virtually invisible. I used scar butter from Sephora and have been pretty good about massaging the scar...creepy as it may sound.
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Marci,
I'm glad to hear you survived your trip and dinners out! And I don't think directions are very helpful when in Boston anyway, since I always seem to get lost there, even when following the directions exactly! I think it must be a part of the master plan of the people of Boston - they want to keep the rest of us out! :D
Good luck back on the job. I'm sure you'll do fine!
Lori
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I think it must be a part of the master plan of the people of Boston - they want to keep the rest of us out! :D
Ah, you finally caught onto us! :)
Sorry to have missed you while you were here, Marci! I know it was a hectic time for you. I'm only 15 min from downtown.... maybe next time!
*drives outta thread, cutting off poster's cars while changing driving lanes without use of my turning directional blinker* :D
Phy
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Phyl,
I will definitely email you the next time I'm in town, which is at least once or twice a year. Love Boston, hate the driving!
M
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Hi all,
I have now worked part-time for two consecutive days. Yesterday I was exhausted, today was better. I think I can, I think I can....
Marci
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WHOO-HOO!!!!
K ;D
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Marci,
Congratulations on your return to work. Even going part time I'm sure it is a challenge. One more day to go and then you can have a nice relaxxing weekend.
Wendy
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Congrats on returning to work, Marci. The fatique gets better. You learn to manage it better, too. It sure sounds like your recovery is right on track. I'm happy for you!
Brian
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I have now worked part-time for two consecutive days.
Workaholic. ;D
Steve
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Hi all,
I have now worked part-time for two consecutive days. Yesterday I was exhausted, today was better. I think I can, I think I can....
Marci
Showoff.
Seriously, I think you can, too. Go Marci! :D
Jim
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Yes, three half-days of work and I'm still here. I will do the same for one more week before jumping all the way back in. Thank you for the encouragement--what would I do without you guys?
So, when does your head (the AN side) begin to feel more normal? Or is it just a given that it will feel weird forever? I can handle that, just want to know.
Marci
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Well, 18 months post-op and the side of my head still doesn't feel normal. Still some numb spots, but at least it doesn't hurt! ;D
Lori
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I'm with Lori - although I'm only about 15 months post op.
My head doesn't feel normal either - but it feels more normal than it did. Hope that makes sense to others :P
I still have numerous numb spots and wouldn't be surprised if I always do.
Jan