ANA Discussion Forum
General Category => AN Issues => Topic started by: DLM4me on May 13, 2009, 02:28:12 pm
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First, I haven't forgotten about this wonderful forum...it's just that I'm unable to focus my eyes [most of the time], so posting/reading is difficult or impossible. Which brings me to my point: I'm really having post-op blues. :(
Since being released from the hospital last month I've had to make several unplanned trips to House to see various doctors. I've had horrible headaches, the double vision returned, the inability to focus my eyes persists, my blood pressure and pulse are very high despite additional meds, I'm not sleeping much, and I generally feel like crap. But the absolute worst things are the brain fog (will it EVER go away?!) and the inability to close my right eye. I knew that facial paralysis was a possibility, but somehow I didn't think it would suck so much. But it does.
Sorry for the down tone of this post but I wanted to give something of an update and unfortunately it's mostly bad.
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DLM4me ~
I'm very sorry to learn of your post-op problems. Please don't apologize for your post. You certainly have reason to be a bit depressed. We can empathize with you and frankly, if you can't vent here, where can you? You'll be in the prayers of many for healing and a lifting of your spirits. Remember - it won't always be this way.
Jim
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Hi DLM4me-
Jim is right - you never have to apologize for having a down day or days here. Last year at this time I was headed back to the hospital with a post op infection, so I can somewhat relate to your frustration. And, yes, the facial paralysis thing definitely sucks more than anticipated - the whole eye situation is particularly stressful, or at least it was for me. I won't tell you it will get better, because you already know that and you are probably sick of hearing it.
so, I'll just say that I know how you feel and I am sending you a big hug and lots of good thoughts.
Debbi
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DLM, hope things look up for you very soon. I'm sorry you aren't having one of those super-speedy recoveries. In the long view, you are still near your surgery date, and I am optimistic that you'll see improvement. It must be very boring and frustrating to have a full month of brain fog! In the meantime, I'm glad you are in L.A. so you can have followup visits as needed.
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Oh honey I can relate... I did expect to lose my hearing but was not at all prepared to have facial paralysis. AND I didn't know the eye was involved when you have facial paralysis. The eye has been by far the worst of it!!! They were not sure if I had an AN or a menginoma(sp?). It sucked and I can't begin to tell you how depressed I became. One friend (and I will use that term loosly) said "Wow your face...that is such a bummer...if it was an arm or a leg...but your face...this is terrible." Not something I needed to hear.
I struggled for some time and then thought okay what am I going to do about this? I started to invent things to make my life easier (search eyewear). I became a master at taping my eye (which I will share shortly, I took step by step photos) which works great for me. I still tape it at night almost a year later, its not so bad really.
I also went to my doctor and went on antipdepressants and things started to look brighter. I kept thinking to myself this is not taking my life, this is not taking my life. So i went back to work after 12 weeks. Funny cause I certainly was not ready, at the end of the day I was sooooooooooooo exhausted. I remember one day I put my boots on the wrong feet and was too tired to change them. Looking back I am glad I went back, made me feel kind of back to normal. I teach kindergarten so the children were very loving and accepting.
Believe in yourself, YOU will get better. Do everything you can to set your body up for success. Remember we are here for you, been there, done that, try this!
Hugs Michelle :-*
Feel better!
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DLM,
I'm very sorry to hear about your post-op issues. I wish medicine were more advanced so none of us would have to deal with these frustrating after effects. Outcome results just seem so random sometimes, regardless of where the surgery is performed.
I will keep you in my prayers and hope your issues resolve themselves very quickly.
Ernie
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DLM4me .....
So sorry you are having to endure the unpleasant potential after effects of AN surgery ..... it truly does suck and you have every right to have down times. As Ernie says we have come a long way in treatment for ANs but medicine is an imperfect world because each of us have unique brain structures. I will certainly keep you in my prayers, especially that these struggles will soon diminish and eventually go away!
Clarice
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So sorry you are having a rough time. I think many of us have been through this in one form or another, so this is the best place to vent. I hope that you see more improvement soon-you are still "just out of surgery" and it wasn't a hangnail. It will get better. I'm sending you lots of good thoughts and prayers.
Best,
Marci
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DLM4me~
So, I guess the Hokey Pokey just isn't cutting it for you anymore! I will have to go back to my bag of tricks and see what crazy childhood thing will help lift your spirits! ;D Seriously, I know how it stinks to have surgery and NOT have things turn out the way that you think that they will. I hope that you will begin to see more good days than bad and that things will turn around for you. You will be in my prayers!
K
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DLM4me -
as Jim said, it won't always be this way.
Healing takes time; you'll get there.
Having patience, while not easy at all, is definitely key.
Hoping you see improvement very soon.
Hang in there,
Jan
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DLM4me: I will pray that all these post op issues resolve as quickly as possible.
I know it isn't easy, but hang in there.
Continued healing, Nancy
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Hi DLM,
It's true what all have said.. time passes, it gets better. The eye thing is a pain. Solutions presented on this forum have been really helpful to me. Headaches are a pain too. I really hope your's go away soon. A month isn't that far out... I remember thinking I should be 'all better' at some of these anniversary milestone days, but those were some of the days I actually felt worse (like, i'd be 'fine' at 2 1/2 weeks, then have a horrible day on the 3 week aniiv, stuff like that).
I'm 3 1/2 months now, it's weird how some things are so much better, and now some things are worse ! (like my incision hurts more now than it ever has). Still I feel thankful and happy for the progress and am grateful for the support here on the forum.
Keep in touch and don't be hesitant to vent!
Keri
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I'm having a great deal of trouble focusing my eyes this morning so I haven't read everything yet. I wanted to point out a few things--and if my post is full of typos, excuse me please! I'm normally such a nitpicker when it comes to spelling/grammar, but when you can barely read it's hard to proof your post before submitting (and I don't use a spellchecker).
This--the AN surgery and its aftermath--is just the latest in a LONG string of health problems. It's been almost six years since I was able to work. A year ago I finally had my Social Security Disability claim approved, so I'm receiving SSDI monthly benefits, Medicare, etc. But not being able to work TOTALLY sucks. But that's not why I'm mentioning this. The fact is, my overall health is bad and it's affecting the way I'm NOT rebounding from surgery as I'd hoped. After all of my other operations--spanning 30+ years--there was a pattern to it: Be sick, have surgery, have the offending diseased organ(s) removed or broken bone repaired, feel like I've been run over by a truck, and then DAILY start feeling better. With this, it's just not happening as expected. :( For one thing, the PROFOUND EXHAUSTION was a total surprise--even though Nancy had forewarned me! My stamina has been sloooooooooooooow to come back. I can't believe it takes so much out of me to do the simplest things, like shower. I HATE not being able to drive. And weirdest of all is that this is the first surgery I've ever had that actually CREATED new problems that didn't exist pre-op. For example, the facial paralysis and its ramifications.
The net effect is that I'm very depressed--and that's another issue. I've battled depression my whole life. I've been in therapy and/or on antidepressants (as I am now) for decades. The frustration I feel as I see myself struggling to rebound from surgery is immense, and it's definitely adding to the depression. I feel helpless. And like it's never going to get better. I know, of course, that it WILL, but right now it just doesn't feel that way.
Thanks for listening. You're the best. :)
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Hi
I am 2 1/2 weeks and I feel your pain. I did not except the hearing loss and the facial paralysis and the eye thing. How are we suppose to balance if we can't see out of one of our eyes. Just wanted to let you know I feel your pain because I feel the exact same way!!!
Marybeth
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I saw Dr Stefan (the internist) yesterday. We've been trying for weeks--since before surgery--to get my BP and pulse down, but it's not working. He has added two new meds to what I normally take. We're hoping this works because with my BP and pulse as high as they are now we're looking at a potential stroke, brain swelling, etc.
Oh, speaking of high BP and pulse: Last night my sister informed me that I did NOT have brain surgery! Really. During a phone call that raised my pulse to 130 and my BP to 172/119, she said [after I had said, "look, I had brain surgery recently and..."]: "No you didn't. You keep saying that but you DIDN'T have brain surgery." I was just dumbfounded. I felt like I was in the Twilight Zone. I told her that she may THINK she knows more than my NEUROsurgeon and my NEUROtologist and the other six doctors on my case, but THEY call it brain surgery. (Background info: My sister long ago claimed the role in our family as "the sick one"--although she's actually never had REAL illness, like I have. When I lived thousands of miles away she milked this role for all it was worth, with every family member constantly asking how she feels, if she's gotten over her cold, her sore throat, whatever. She complains about EVERY ailment--things like pollen allergies that I have (100 times worse!) and never even think about, and definitely never talk about. Then I move back home and take the spotlight off of her. So now, instead of focusing on the PROFOUND surgery I had and its debilitating aftermath, she's actually trying to find ways to trivialize it. Amazing.)
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DLM4me ~
As a person who has been blessed with lifelong good health, not counting my AN, of course, I always thought hypochondriacs were very odd. What a sad way to receive attention!
Apparently your sister finds rewards in exaggerating her minor illnesses. That she is apparently jealous of your brain surgery (what would she call it?) is pathetic. I wouldn't be seeking out this sibling very often if this the kind of neurosis she brings with her. You don't need this and I'm sorry you have to deal with it.
Jim
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I must admit I call it "brain surgery" in some settings and "my ear procedure" in others, depending on my desired impact on the listener. ;) A girl's got to have some fun.
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Well, I directed her to AN's "what is an acoustic neuroma" page, specifically this part:
An acoustic neuroma (sometimes termed a vestibular schwannoma or neurolemmoma) is a benign (non-cancerous) growth that arises on the eighth cranial nerve leading from the brain to the inner ear. This nerve has two distinct parts, one part associated with transmitting sound and the other with sending balance information to the brain from the inner ear.
It's truly astonishing that she's so jealous--because I'm not only sick now, but have a LONG, DOCUMENTED history of serious health problems--she has to resort to nonsense like this.
Oh, she's also telling people that I *CHOSE* the most difficult type of surgery! Never mind that--for *MY* tumor--retrosigmoid was never an option and translab would've sacrificed my hearing. Considering I had good vocal recognition prior to surgery, middle fossa was the most logical--and best--choice. But she knows more than the doctors! ::)
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DLM4me,
I don't know the relationship with your sister, but it sounds like she needs the attention and her way of getting it is by playing the victim with medical issues. I agree with Jim, her seemingly being jealous of your brain surgery is pretty pathetic.
I've found that people that have to talk about themselves all the time like that and have to one-up everybody are not worth your attention and worry.....certainly not to the point that it affects your own blood pressure and/or pulse.
I did not have near as many issues as you've had after the brain surgery(sorry sis) but I can empathize with you on the eye issues...I had that for quite awhile and I'm very thankful that it has improved over the last few months. I'll pray that everything starts to get better with your issues soon.
Patrick
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When I can see again I'm going to send her some more links, like this from the National Institutes of Health:
http://www.nlm.nih.gov/medlineplus/ency/article/000778.htm
Causes:
Acoustic neuromas are relatively uncommon, but they are one of the most common types of BRAIN TUMORS.
The tumor is usually found at the base of the brain.
Possible Complications:
* BRAIN SURGERY can completely remove the tumor in most cases
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Truly amazing...I would LOVE for someone to look at me & tell me I didn't have brain surgery!! ;)
K
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OMG!My siter did the same thing 3 weeks post -op she calls me & wants to argue weather it was brain surgery or not!HELLooo
to even mess w/ me when i was on those steroids w/ 32 stitches in my head...I ended up up saying you know what???I gotta go!
i then e-mailed her an entire articlle on AN being brain surgery.
She called my mom after & my mother told her to call back n apologize.She said she was mad at my niece & felt like picking a bone w/ some one.Wrong person to pick a bone w/! :o
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Hell will freeze over before I hear an apology from my sister. Not. Going. To. Happen.
I've always known that she's bothered by the FACT that I've been plagued by real health problems--big ones, life-threatening ones, life-altering surgeries, multiple hospitalizations, etc.--while she moans and groans about every LITTLE, TRIVIAL problem. But, honestly, she has reached SUCH a new low with this...
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Does she have some kind of mental conditon? Almost sounds like it. I said something to my surgeon about brain surgery and he answered back that it isn't brain surgery. 5 or 6 sentences later he called it brain surgery! To me it is.
Just try and not even think about her response and know what you have had done and life is not easy now but will get better in time. It is very hard past surgery not to be emotional about what we have been thru. Go ahead and have a good cry each day as needed. I did my share and wasn't even sure what for. Happy to be alive, sad over having to go thru what we go thru.
Sounds like the sister is manipulative and any response she thinks she can try for! Hang out with us and we will be what help we can! Be good to yourself!
Cheryl R
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All I can add is WOW!!!! It sounds like you and your sister probably go back many years with conflicts ..... this was the ultimate wound, however.
Although technically acoustic neuromas are not within the cerebellum, removal of them certainly qualifies as brain surgery, given they are skull-based tumors. I consider both my AN surgery and my microvascular decompression surgery (relief of pressure at the brainstem) brain surgeries. Makes you almost want to say to her "Would you like to have a hole drilled in your skull and not consider it brain surgery???"
I agree that you should distance yourself from these caustic putdowns ..... you know what you had ..... she is the one who is psychologically miserable ..... I would not contribute to any further conversations on health issue topics.
Hang in there and come here to vent!!
Clarice
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It truly is pathetic, isn't it? I honestly can't imagine being so jealous that instead of focusing on the profound nature of the surgery, and its complications and aftermath, she's actually grasping at straws to minimize it by telling people it wasn't brain surgery.
Here are a couple other links I've found in case anyone's interested in what some of the preeminent medical organizations have to say about it:
http://www.cancer.gov/cancertopics/factsheet/risk/brain-tumor-study (National Cancer Institute)
Types of Brain Tumors
Schwannomas are benign tumors that develop in Schwann cells. Schwann
cells produce the myelin that covers and protects the peripheral or
cranial nerve fibers connected with the brain.
Acoustic neuromas are a type of schwannoma that occurs in the nerve
between the brain and the ear. They occur primarily in adults.
Among adults, the most frequent types of brain tumors are glioblastoma
and other astrocytic tumors, meningiomas, acoustic neuromas, and
pituitary gland tumors. Less common types include oligodendroglioma,
ependymoma, lymphomas, vascular tumors, and tumors of the pineal gland.
http://www.csmc.edu/5189.html (Cedars-Sinai)
Acoustic Neuroma
An acoustic neuroma is a benign (noncancerous) brain tumor that starts
in the cells that wrap around the auditory (hearing) nerve in the head.
These tumors may grow on one or both sides of the brain. Acoustic
neuromas account for about seven percent of all brain tumors.
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As I'm sure you know, you're never going to win an arms race with someone like that, so I wouldn't waste your now-very-valuable healing energy on arguing semantics with her. People just are what they are!
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I know. My sister thinks she knows everything. However, I'm going to send her several printouts from sites like the US National Library of Medicine, the National Institutes of Health, UCLA, the National Cancer Institute, Cedars-Sinai and, of course, our very own House Ear Clinic, that state in black and white that acoustic neuromas are BRAIN TUMORS and require BRAIN SURGERY to remove. I've written a letter to include with those printouts. In it, I suggest that she come with me to see Dr Brackmann so she can inform him that *HE* is wrong when he says he did brain surgery on me. I can't wait to see her response!
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I saw Dr Stefan (the internist) yesterday. We've been trying for weeks--since before surgery--to get my BP and pulse down, but it's not working. He has added two new meds to what I normally take. We're hoping this works because with my BP and pulse as high as they are now we're looking at a potential stroke, brain swelling, etc.
Oh, speaking of high BP and pulse: Last night my sister informed me that I did NOT have brain surgery!
DLM,
What strength you have had to have with other medical issues complicating matters. Yes, for myself even without other health issues, I remember sleeping and being tired. It is pretty typical to be exhausted just one month out. The fact is that brain surgery does that.
IMHO, regarding your sister, she has a pattern of behavior that you are not going to change. You do not have to DEFEND your surgery or type of surgery to her. Break the pattern and don't involve her in "one upsmanship". She is a difficult person because she thinks differently than you.
Your energy is needed for your recuperation. Try not to let her interfere with that. Your focus needs to be solely on you right now.
All the best.
Kate
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The problem...well, PART of the problem!...with my sister is that she's actually telling everybody in our family these nonsensical lies. Of course *I* understand why she's doing it, i.e., she's basically having a hissy fit because I'm sick and she isn't (just how pathetic IS that, anyway?). But certain relatives think everything she says is gospel and they're believing it. I feel compelled to not only correct them but to put her in her place, and what better way to do that than to CHALLENGE her to come with me to tell Dr Brackmann that HE is wrong?! Can you imagine anyone STUPID, self-centered and egotistical enough to tell *THE* preeminent surgeon for this type of brain surgery that it ISN'T brain surgery?
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Your sister sounds like a former frined of mine. No matter what horrible thing happened to someone, her life is always worse, more challenging, etc. You're right -- this pathetic behavior is a bid for sympathy and attention and such people refuse to believe ANYTHING worse can happen to anyone else. Your sister sounds like she needs help. You shouldn't need to prove anything to anyone at this time of your life, they should be supporting you without question. Friends and family who really know and care about you will. I understand your desire to bring your sister to see your doctor, but people like here will most likely refuse to believe the truth, even when it's staring them in the face. My advice is that it is not worth it to try to convince her of anything -- spend your time and energy getting better, that is the best revenge.
Wendy
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In all the craziness with my sister's idiotic declaration, I forgot to mention something that Dr Stefan said the other day. He's actually optimistic that my facial paralysis will resolve faster than we've been thinking. I had resigned myself to a year, perhaps more, but he said that based on the function I had immediately post-op it's POSSIBLE that it'll clear up before that. He said that when a patient has good function post-op and then it gets bad, the paralysis tends not to last as long as in a patient who wakes up already paralyzed.
I've also failed to mention that all of the doctors have done things to test my hearing (I don't mean a hearing test, per se, but other things to check hearing) and I DEFINITELY do have hearing! I cannot hear sounds in the room, like the TV or a phone ringing, but if something's held directly to my ear I can hear it. When I see Dr Brackmann again next month he may have a hearing test done if the blood and other post-op gunk have sufficiently dissipated by then. Looks like my sister's declaration that I *CHOSE* the most difficult surgery--for no good reason, mind you!--is as idiotic as her "you didn't have brain surgery" comment. ::)
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Great news about Dr. Stefan's optimism regarding your facial paralysis and equally great news that you can hear ;D ;D ;D
I envy you the hearing - although I love my BAHA, I still miss the days when I wasn't SSD.
As for your sister, all I can say is every family seems to have one - maybe not the same issue, but perhaps another. As Kate said, you're not going to change her and you should use your energy for your recuperation. Don't let her get under your skin; I'm sure that's one of the affects she's hoping for.
Best,
Jan
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MiMoore,
Please post the eye taping thing. I have to tape each night also but I can't seem to do it myself. My poor family has to do it and I would love to not have to ask them each night. Mine seems to be getting harder and harder to get shut because now the bottom lid is sagging and it's hard to get them to meet. Got any solutions? Thanks
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Hi epodjn: Maybe I can help a little with the eye taping. Recently my optholmologist said to use 2 inch wide 3M transparent tape - b/c it's a larger piece it holds down my eyelid much better. I also have been & still use a product called: NITEYE, the dry eye comforter (bubble bandage) - it's a plastic bubble with adhesive all around it & works like a moisture chamber during the night. Medtronic sells it at approx. $28.00 for a box of 14 nonsterile (that includes tax & shipping). Their tel.# is 1-800-535-4646, they will walk you through the process of getting a customer #, then the next day you place your order. I have started taking turns at night with using the tape or eye bubble.
Hope this helps.
Oh, I forget who it was but someone suggested the 3M soft cloth surgical tape, easier on the skin, but I haven't tried it yet.
Always good thoughts, Nancy
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The problem...well, PART of the problem!...with my sister is that she's actually telling everybody in our family these nonsensical lies. Of course *I* understand why she's doing it, i.e., she's basically having a hissy fit because I'm sick and she isn't (just how pathetic IS that, anyway?). But certain relatives think everything she says is gospel and they're believing it. I feel compelled to not only correct them but to put her in her place, and what better way to do that than to CHALLENGE her to come with me to tell Dr Brackmann that HE is wrong?! Can you imagine anyone STUPID, self-centered and egotistical enough to tell *THE* preeminent surgeon for this type of brain surgery that it ISN'T brain surgery?
If you take anyone, you may want to take one of the "gospel" receiving relatives to reduce the "drama". My guess is that even if you do take your sister, she will use information from the visit in an unanticipated way--such as selecting one statement that she can use to minimize the "brain tumor".
Your energy is better spent on you and not giving her the permission to minimize your AN by debating her. It appears that your sister likes drama and tries to make her candle burn brighter at your expense. Stop the drama by breaking the "predictableness" of the reactions which is proving your case. Instead go around that and if you want to "prove it" to anyone, involve someone else such as another relative and ask them to come with you to Dr. Brackman.
Kate
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There is a semantic difference throughout the literature, so even reasonable people can disagree -- it's not surgery ON the brain tissue itself -- but surgery that requires a craniotomy and manipulating the brain, done by neurosurgeons, so close enough for most of us.
But arguing it with someone who is just out to provoke you would be about as productive as debating "Who's on first" or "Which came first, the chicken or the egg"!
On the other hand, fighting back on this point seems to have energized you some from your first post back, so maybe the brain stimulation of defending yourself IS helping! ;D ;D ;D
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I agree with others that you should not be wasting your time or your ENERGY, trying to get your sister to change. Let it go, let go of the anger, concentrate on getting better.
Best,
Marci
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epodjn, we tried many different methods of taping and types of tape before I hit on something no one had mentioned: Band-Aids! By using one Band-Aid HORIZONTALLY across my eye, it's a piece of cake taping it myself and it works like a charm. I know it's hard to do it yourself at first but I assure you it can be done. What I do is place my fingers on the outside of the bandage, over the padded part, and place it so the pad is directly over my eyelid. Then while pressing it down I manipulate it so my eyelid is pulled down to where I want it. Then I press down and secure the bandage in place. It holds for a LONG time, and is [relatively] painless to remove.
Regarding my sister and the advice to not let her get to me, the comments about every family having one, etc.... It's just so INFURIATING that anyone--let alone a SISTER--would try to trivialize the profound, life-threatening, life-altering surgery I just went through. I've written a letter that I'm going to send to her along with printouts from the places I mentioned earlier (NIH, UCLA, Natl Cancer Institute, et al). My favorite part challenges, basically dares, her to come with me to see Dr Brackmann. I would guess that there's...oh...ZERO PERCENT CHANCE that she'll take me up on it! I just have to wait to hear the excuse she uses to get out of it. NO WAY does she want to completely humiliate and embarrass herself by telling the world's most respected surgeon for my type of brain tumor/brain surgery that *HE* doesn't know what he's talking about. I would love to see his face, though, if she actually had the balls to do it. :o
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Regarding my sister and the advice to not let her get to me, the comments about every family having one, etc.... .. I've written a letter that I'm going to send to her along with printouts from the places I mentioned earlier (NIH, UCLA, Natl Cancer Institute, et al). My favorite part challenges, basically dares, her to come with me to see Dr Brackmann. I would guess that there's...oh...ZERO PERCENT CHANCE that she'll take me up on it! I just have to wait to hear the excuse she uses to get out of it. NO WAY does she want to completely humiliate and embarrass herself by telling the world's most respected surgeon for my type of brain tumor/brain surgery that *HE* doesn't know what he's talking about. I would love to see his face, though, if she actually had the balls to do it. :o
Your anger is deep and it comes through in your post . For your health and well-being which seems to be rooted in getting your sister's admissions and approval, I hope she changes her tune..
All the best,
Kate
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You may want to put that letter away for a week, let your anger subside, and then reread it before sending it to your sister.
As infurating as she is, adding fuel to the fire might not be your best option and things said in anger aren't easy to take back at any point in time.
Just a thought,
Jan
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DLM4me:
Here is what you should have said in that phone call with your sister: "Oh, of course you are right, my dear sister. It was just a slip of the tongue." When with other family members, look at them and roll your eyes expressively. ::) As long as you attribute some significance to your sister's opinion, she wins. As soon as you ever so politely and kindly dismiss it without discussion, you win. You will be tempted to say "that's what the doctors call it," but that should be directed at other family members in her presence, not at her directly. In the end, the patient who went through it, and her doctors, will carry the day.
You can get past this one. ;)
Steve
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I know, I know... It's just that I've been annoyed FOR YEARS at the way she plays 'the sick one' ALL THE TIME, yet she's never actually had any real illness. She wouldn't know how to cope with REAL illness. And, again, it's incomprehensible to me that she's so desperate for attention that she's stooping to these new, despicable lows.
Anyway, I'm wondering about resuming driving. *I* want to believe that a month from now I'll be driving again, but I have nothing to back that up. Certainly my doctors haven't suggested that that's even a possibility, but I want to believe it. Considering my ongoing, constant vision issues (inability to focus, plus the occasional return of double vision), and the ongoing dizziness, am I being ridiculous? Is it possible that I'll be well enough a month from now to drive? (I know no one here has a crystal ball!)
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Hi again,
Everyone recuperates at different rates and you will know if you are ready. It is the needing to turn your head when changing lanes that will be the benchmark. I also remember being startled by semis swooshing by me.
I was able to drive at 5 weeks, but I didn't like driving at night at first.
I hope this helps.
Your body will let you know when you are ready.
Kate
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DLM4me:
Here is what you should have said in that phone call with your sister: "Oh, of course you are right, my dear sister. It was just a slip of the tongue." When with other family members, look at them and roll your eyes expressively. ::) As long as you attribute some significance to your sister's opinion, she wins. As soon as you ever so politely and kindly dismiss it without discussion, you win. You will be tempted to say "that's what the doctors call it," but that should be directed at other family members in her presence, not at her directly. In the end, the patient who went through it, and her doctors, will carry the day.
You can get past this one. ;)
Steve
Hi DLM4me! I read your thread earlier this morning but didn't have time to comment until now...
A similar thread was started under "Cognitive/Emotional Issues"= see this thread if you are interested: http://anausa.org/forum/index.php?topic=9010.0
(I have a relative who told me, oh well, we are all getting older - geez louise, i didn't ASK for an AN, and neither did my sister!)
I believe, like Steve, that you will get past this one. After all, no one else knows what you have been thru until they have 'walked a mile in your shoes.'
May you have continued strength to get through your physical health issues and the wisdom to focus your energy on yourself and those who truly care about you.
We care - we are here for you.
My thoughts and prayers are with you.
Hope you eye gets better in the coming days.
Keep us posted.
Sincerely,
Sue
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Kate, wow, 5 weeks? I'm just past that now and am nowhere near ready to drive. But, yes, I know we all recover differently. If I can drive a month from now I'll be thrilled, and I'm setting that as something of a goal. Naturally it's up to my body, but at least it gives me something to shoot for.
Ironically, my car's registration renewal arrived from the DMV right before I went into the hospital; this is the year that I have to get a smog check done. Well, I set it aside and INTENDED to ask one of my visiting relatives/friends--all of whom can drive stick shifts--to take the car in for its smog check so I could renew its registration. Can you guess where this is going? Yep, I completely forgot about it until the last of my houseguests had left. The only relative I have here who knows how to drive a stick shift is...you guessed it!...my sister, and I'm not about to ask her to take it in. So I went ahead and paid the renewal fees online the other day so at least I'll avoid late charges/penalties. But with my luck I'll get stopped ON MY WAY to get the smog check on the first day I'm able to drive again. And this isn't just wild speculation, either! Some years ago when I was living in Texas my inspection sticker expired on May 31--but I hadn't realized it. On June 1st I was half a mile from home and I got a ticket for an expired sticker. Really.
Sue, I'm blessed to have a number of people who truly care about me--unfortunately, most of them are currently living thousands of miles away. Five of them (well, 4-1/2...my 15-month-old grandson was one of them!) came to take care of me--they planned their trips so there'd be continuous coverage for five weeks post-op. I can't even describe how hard it was when the last of them left. :( As for my sister, she's acting like a spoiled brat...which actually describes her quite well. But even though I've always known she's a spoiled brat this latest nonsense still amazes me.
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DLM4me~
Did you just get stopped or actually get a ticket? If you did get a ticket, they dropped it once you showed them the paperwork, tight? I have lived in Texas all my life, as have my parents and that is one of the first things my Daddy taught me was that you need to get it done, but if you forget, it is OK because you have a 1 week grace period. I did believe him, but had to see it firsthand a couple of years ago!! ;)
K ;D
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No, I got a ticket. And I specifically asked if there was a grace period, seeing as how it was less than 24 hours since it had expired. I was told no. So I paid it--at least it wasn't a moving violation so I really didn't care too much--and basically forgot about it. Except in situations like this!
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DLM,
Don't let her get you too wound-up. Does she have a computer? Copy a link to this thread and e-mail it to her! That should give her something to mull over for a while!
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DLM,
Catching up on your progress, trials, and tribulations.
Boy do you have your hands full! I'm so sorry to hear about your sister's behavior.
I am one of 6 girls, and yep there's usually one who needs all the attention.
She will never admit she had a problem, nor will she seek shrink help if advised!
She obviously did not get her emotional needs met as a child. :(
You may have "hogged" the emotional support of your parents, who knows. And she resents that (??? ???)
It may take you longer to get back to driving and such.
Have you tried keeping a journal and writing down how you feel each day with all your different symptoms?
Then you can look back and hopefully say"Oh yea, I am improving!"
It is so slow and steady, we have a hard time seeing the progress. We just want to feel better, is that too much to ask?
Hang in there, and it is still baby steps. :'(
Maureen
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Yeah...sometimes I think the months of being in the hospital eating from a tube that went down my nose, pissing in a bag, ****ting in another while a tube coming out of every orifice is no measure to the psychological and post traumatic effects of having an AN. Facial paralysis has been one of my biggest challenges especially since I want to go in a sales type career. Its hard to have the aspects stripped from you that you may never may be able to smile again and people constantly look at you because you are deformed it seems. Its hard in a college type atmosphere. The eye thing sucks too! The truth is there are always alternatives out there Alot of them involve more surgery but many cases its well worth it.
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The inability to focus my eyes is really getting to me. I'm lucky if I have a total of 30 minutes per day when I can see well enough to read--and I have to use those minutes judiciously, like opening important mail, paying bills online, etc. I'd RATHER be hanging out on this and other forums, but I have to prioritize.
My neighbor took my car in for its smog check, so that's all taken care of. She was very sweet about it and I was very grateful. :)
I'm trying to convince myself that I'm seeing some voluntary movement on the right side of my face. I strain and strain to make SOMETHING move! I honestly don't think anything's happening over there, I mean other than just following along as the left side moves. But I keep looking!
About my sister: She's ALWAYS been the one to get all the attention in the family. That's what she's used to. And since I lived thousands of miles away for many years--during ALL of the other illnesses/operations/hospitalizations/etc.--she carved a niche as "the sick one" in the family. When I first moved back home I couldn't BELIEVE how much she complains about every little thing--like allergies, which I have, too--many times worse than hers, and I NEVER complain. At family gatherings the discussion revolves around, "How are you feeling? I know you were SO SICK! Are your allergies better? Did your sore throat go away?" The first time I sat through one of those events, I just sat there thinking to myself, "*I* am the one who is sick...but I'm not saying a word. This is really weird."
Oh! This would be funny if it weren't so pathetic: She's TRYING to backpedal on the "you didn't have brain surgery" statement! My best friend has exchanged a few e-mails with her, and in one my sister actually said about it, "That was a joke!" Um, no, it was not a joke. Not when she said it to me and not when she said it to ALL the other people in our family (most of whom have reported back to me). So if she thinks she's going to get out of this by claiming it was a joke, she's out of luck. Each relative who told me about it said that when she told them I did NOT have brain surgery they had two thoughts: "Has she lost her mind?!" and "Why on earth is she trying to trivialize what her SISTER has gone through?"
I DID send that letter along with a stack of printouts explaining that it is brain surgery. I invited her to come to my next appointment with Dr Brackmann so she can tell the world's foremost authority on this type of brain tumor that it's not brain surgery. Surprisingly (wink, wink), I haven't heard back from her yet! I guess she doesn't want to humiliate the hell out of herself with her little "joke."
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The inability to focus my eyes is really getting to me. I'm lucky if I have a total of 30 minutes per day when I can see well enough to read--!
About my sister: She's ALWAYS been the one to get all the attention in the family. That's what she's used to.
Oh! This would be funny if it weren't so pathetic: She's TRYING to backpedal on the "you didn't have brain surgery" statement!
I DID send that letter along with a stack of printouts explaining that it is brain surgery. I invited her to come to my next appointment with Dr Brackmann so she can tell the world's foremost authority on this type of brain tumor that it's not brain surgery. Surprisingly (wink, wink), I haven't heard back from her yet! I guess she doesn't want to humiliate the hell out of herself with her little "joke."
I am sorry to hear about the blurry vision. I hope that your appointment at House goes well.
Regarding your sister: It sounds like it is an escalating situation where you are each garnering support of other family members.
My feeling is your sister likes drama. Most important is to realize that you can't change her behavior. Her backpedaling is her way of backing down because she probably realizes she was out on a limb relative to it. Instead of saying, "I am sorry", she is nervously telling people she was joking.
You have nothing to prove to anyone and expending valuable recovery energy on it only zaps you. In my humble opinion I would try to let it go now.
When is your appointment with Dr. B again?
Also, what a great neighbor to help take care of your car!!!
Kate