ANA Discussion Forum
General Category => AN Issues => Topic started by: lacey7 on July 19, 2008, 08:41:03 pm
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I do have a question that came up today.
I was able to take off my dressing, and wash my hair today for the first time. It's the first time I saw my incission(s).
I have two rows right next to each other. My question is how did everyone handle going out in public for the first time. I just wondered if it grossed anyone out, or anyone said anything? How long did it take for your hair to grow out so it wouldn't show?
I know it probably looks worse to me.............and I don't feel like going anywhere for awhile, but did the women in the group have a hard time getting the one side of your hair to look kinda like the other side? Did you go in and get haircuts? Did you wear hats for awhile, or just let it show?
This is a minor problem, compared to others.........but it did bother me today.
Thanks in advance. I'd appreciate any suggestions.
Lacey
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Hi Lacey-
I felt the same way about my incision. I just put gauze over it and tied a "cutsie" bandana around my head. Nobody ever said anything or looked "grossed out".
My hair has grown about 4 inches in 11 months. My friend cuts my hair because I'm still squeamish about the numbness.
You're correct in stating that it looks worse to you. That's what everyone(my family and friends) said to me.
I'm sure there will be plenty more suggestions to come.
Remember, it's just temporary. Before you know it, you won't even think about it. :)
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The hair does grow pretty fast. I was 3 mos post op from this last surgery 2 days ago and I am putting up with my mid fossa hair that has grew some but still doesn't look like the other side. I recently had my hair cut really short so they would be similar but aren't quite and I don't like it. It shouldn't be long though and willl look thre same on both sides.
The 2 yr ago translab and then the CSF leak had hair that fell down over most of it so got by better then. Just do with what feels the best for you and who you are going to be around. I never did wear any type of scarf or hat.
Are you feeling better now? Cheryl R
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i had translab and had long hair, so the shaved part was covered quite well. Even though one side of my hair looks "thinner" than the other, no one knew i had surgery until i lift up the longer hair. anyway, my hair grew pretty fast but 3 mths after my surgery, i decided to cut the rest to "match" the short hair. But after the surgery, i did wear a beret type hat where i tucked all my hair in, helps to cover the shaved hair and hide my greasy unwashed hair!! hope this helps and hope you are recovering well too.
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The hair will grow back...
Be sure to make sure the incision (scar) is well covered and not exposed to the sun this summer.
8) Hats are very hip ;)- this time of year. 8)
DHM
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Lacey,
Unfortunately, I'm much too eager to show off my scar--sometimes people don't want to see.
I've been able to get away with not wearing anything to cover my bald spot. The top layers of my hair cover it pretty well. By now (almost 5 wks post-op) my hair has grown enough to cover the scalp. I was so worried about this before my surgery that I got some scarves, but I haven't had to use them. Haven't had a hair appointment yet. I'll hold off on the color for a few months.
Just wear bandanas or scarves if the top layers of hair are too short to cover the area.
Syl
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Lacey -
my surgery was in the summer like yours, and as DHM said, it's important to keep the sun off of the incision so I wore a hat when venturing out on sunny days.
I wear my hair very short (collar length) and the part the docs shaved grew back very fast - by the time my stitches were removed about 10 days post, my incision was fairly hard to spot. The fact that the incision was behind my ear (retrosigmoid for me) also made it less noticeable to others. If you didn't know I had an incision there, chances are you were oblivious ;)
I got my hair cut a little shorter than usual the day before my surgery, so the docs had to shave very little and what they did shave just naturally grew in with the rest of my hair. You didn't mention coloring your hair, but Syl did. From what I recall there is a "unwritten" waiting period post op since your head needs to heal. I don't remember what the time frame is, but if you plan on coloring your hair, I'd ask your doc how long you should wait.
Jan
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My translab incision was so close to my ear that it really doesn't show if I wear my hair down. However, I wear it in a ponytail a lot (because it is just easier and cooler in the summer) so at first I wore a scarf artfully tied around my head to over the incision. What I finally realized is that I notice is far more than others. And, in my case, the facial palsy distracts folks from my scar! (see, a hidden bonus.)
I'm with you, Syl, I still find myself eager to show people my incision ;D
Debbi
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I had retrosig and my hair was to my shoulders. After surgery it looked very uneven. I had my hairdresser cut it a little shorter to make it look more even. And I agree with Debbi, people were so busy looking at my frozen face I don't think they saw I had hair. ;)
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Hi all -
I hope no one minds my hijacking this thread to ask a couple of questions of my own. I know part of the head is shaved, hopefully not too much in my case since I am having translab. I had asked this when I thought I was having middle fossa, but not for translab. How do they keep the rest of your hair out of the way -- should I wear my hair in a ponytail or do they do something different? My hair is long (a few inches longer than shoulder length) and cut in long layers. I have a vague feeling I read something about this but can't remember when or where.
Wendy
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hello wendy, i had long hair too and had translab. i went into OR with my hair down and the nurse first parted my hair behind my ear with gel - unshave side and "to be" shave side. then he held down the unshaved hair with tape and proceed to shave the rest. i don't remember what they do next as i was knocked out ;D i did take a picture so let me know if you want to see it and i can PM that to you. hope this helps!
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Wendy,
My hair length is pretty much like my picture you see here. I had it in a ponytail, but the nurse told me to let it down. When I woke up after surgery, my hair was held up at the top of my head with a rubberband--the kind of hairstyle you see only on a 10-month old girl. The rubberband was painful to remove afterwards.
Syl
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I had retrosig surgery and have long hair so there is no evidence (with hair down) that i have a big shaved patch (growing fast hubbie says) and the incision is already pretty much hidden behind the new growth.
I know this info wont help you much, but maybe those out there who are approaching/considering surgery and worried about their hair (as most women would!).
Good luck....
Trish
ps> and like a few other respondants... the face (and in my case eye patch for double vision! is what gets all the looks! --BTW, kids have no trouble staring and i think they find the patch kind of cool... very "pirates of the carribean"! ;D
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Thanks to Choclatetruffle, Sylk and Trish,
This is one of the few questions I forgot to ask my doctor and I'm probably getting better answers from you anyway. I was feeling very calm and relaxed, probably the result of having what I thought were all my questions answered as Debbi said to me the other day. All of a sudden I am getting anxious again. I guess my calm was just the calm before the storm -- hope it returns.
Trish - We just got back from vacation and were at DisneyWorld for a day. Pirates of the Carribbean was a favorite ride for the girls (12 & 13) If I end up with an eye patch, I'm sure it will bring back memories for them and knowing my 12 year old (I swear she's going to be a stand-up comedian when she grows up!) unmerciful teasing and jokes, lnly hte goodnatured kind though.
Wendy
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Hi Lacey,
Sorry, I hijacked your thread earlier and didn't write to you. I haven't had my surgery yet but if I were you I wouldn't cut my hair yet even if it doesn't look quite right. I remember Debbi saying she just ties a scarf around her head and that covered the incision. Hats would probably be uncomfortable unless they're really losse, and then they might be hard to keep on. I'd go with the scarf idea. That is my plan too.
Wendy
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*puts on Cosmetology hat, unwrinkles hairdresser's license*
Well, hair growth approx 1/2" per month .... again, I use the word approximately. In the summer months, hair tends to grow faster as the heat will stimulate blood supply to the hair shaft plus, we tend to eat more healthy, thus, better nutrients feeding the hair. So, have faith that it will grow back... and, with longer hair, incision sites can be concealed better.
Hang in there folks!
Phyl
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Hey, Phyl, do you do nails ???
If so, I'm going to try to persuade the good folks @ the ANA Hqtrs to throw in a free manicure along with my 2009 Symposium registration.
Surely there's something about this in your moderator's contract :D
Jan
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Thanks so much for all your answers! I didn't realize you shouldn't get the stitches in the sun. It makes sense.....but my brain doesn't seem to be working very well yet! ha.
I feel alittle bad, for complaining about my shaved hair, when some of you have problems with your facial muscles. I'm sorry to be be insensitive.
I pray all of your facial muscles will start working very soon, and be back to normal.
My daughter did confirm to me that the second surgery was when the doctor shaved alot more hair off. From behind my ear, it's shaved about 2 - 2 1/2 inches (to my hair). My hair is very short, but that means I don't have any to cover it. I've always loved long hair, but mine is so fine, it never looked right.
I think the scarf is the best idea.
Wendy, don't think a thing about asking questions in this topic. No problem. When is your surgery? What kind are you having?
As everyone said, the first week is the worst. It gets alittle better everyday. It's been 16 days since my second surgery. (and 25 days since my first). It really wore me out having 2 surgeries.
I didn't have to take a pain pill today, for the first time.......so I AM improving. Hubby and I have started taking walks outside in the evening.
You WILL get thru this, I promise, and I don't lie!!! ha.
Glad to hear from you and everyone. What a blessing this site is.
Lacey
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Hi Lacey,
Thanks for being so understanding. My surgery is this Friday and I am having translab. I am feeling very calm and confident right now and am hoping for a good outcome. I know this surgery is no walk in the park from observing what you and others have gone through, but my doctor is optimistic and that makes me feel the same way. I always try to see the proverbial glass as half full. In this case in the sense that my chances are better that I will have the good outcome I am hoping for (I am a cockeyed optimist too!) Don't apologize for complaining about your shaved off hair. Everyone here understands wht you are going through. It's been said before, but I'll say it again. We are here to support each other in any way we can. Everyone needs to vent, get the support they need and not feel guilty about it. That's why we are ll here.I hope the rest of your recovery is quick and goes more smoothly.
Best wishes,
Wendy
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hello wendy, good luck and best wishes in your surgery!! we are all here to support you - keep us posted!
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Hi Chocolatetruffle (great name by the way!) -
Thanks for your good wishes. My husband is going to e-mail Debbi and she will be posting for me. It's been a long road to this point for me, I really took my time deciding on treatment. Now that the date of my surgery is just around the corner I'll be glad when it is over, or I think I will anyway. I am in such good health otherwise I am truly hoping for the perfect outcome I promised Debbie, Eve and Joe I would have.
Wendy
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And, we're going to hold you to that promise, Wendy! ;D But, no matter what the outcome, we'll all still love you!
Debbi
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Hi Lacey - I had Middle Fossa and pretty much ahd the same reaction as you did when I first saw the incision. I started to wear my hair a little differently to try to cover the incision. But now that it grown a little, I don't really care much about it anymore. I still don't put my hair up in a ponytail or anything.... but I think that the rest of my hair cover the bald spot that growing in.
And oh my.... I haven't gotten a hair cut or color wince my surgery in March!!! and it is way past due
Mary :)
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i honestly never worried about that,they probably thought i was drunk by the way i was walking ,they probably never made it to my hair because of the eye and mouth i would imagine.
if they would have said anything i would have tripped them with my cane or run over thier toes with my wheelchair. just kidding.
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Mary,
They must make the incesion in a different spot with Middle Fossa than with Translab.
I've heard other people say the same thing you did.
Hair color is an entirely different story - ha! I know I have to wait quite awhile to have highlights put in again. I can wait for that. I don't have gray hair or anything, so it can wait.
You are lucky that you can wait that long to have a hair cut. I always get mine cut every 6 weeks!
I go see the surgeon on Friday, and I will ask him when I can go have it trimmed. (Just the right side in the lower back (to match the other side just alittle), and my bangs trimmed alittle.
So they aren't hanging in my eyes!!!
I've learned this week that this isn't the most important thing in our lives right now.......healing is!
Right, everyone?
Oh, Satman, I forgot to answer you.
I would trip them with MY cane (if I had one), FOR YOU!!!!!!! There's power in numbers! LOL.
Best of luck, Wendy, and I'll be praying for you. If you are the same way, it's such a good feeling (except for the pain) just to have it over with!!!!!!! May God be with you, and everyone else in this board.
Lacey
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Best of luck, Wendy, and I'll be praying for you. If you are the same way, it's such a good feeling (except for the pain) just to have it over with!!!!!!!
Note to Wendy -
don't worry about pain. Some have it, so don't - and if you're one who does, there are excellent drugs (legal of course) to help you deal with it.
As for just having the surgery over with it, I'm with Tammy. I personally found that to be a big relief.
You'll be fine.
Jan
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Satman Super 8, 8)
I have so missed you!. ;D Glad to see you posting again.
4 (your better half- tease ;) ) ...actually now I am called "Daisy Head Mayzie"…DHM
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hey 4, you are definatley my better half,ha,ha,crooked smile.
how have you been ?
i dont mean to hijack your thread,just havent heard from 4 in awhile.
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the only responses i got sure werent because of the hair LOL its a little thin up there anyway.
My biggest concern was the looking like a stroke victim. and i did . some kids kinda freaked but ive had that b4. most everyone wanted to know what went wrong and i got tired of answering them. my surgery was almost 8 months ago.
Today only those who havent seen me in a while even notice.
THE problem is Steve..........i see very little progress at times. My wife and co workers have to tell me. and i have to listen to them i'm not an unbiased observer LOL........
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Hi Lacey -
I had the middle fossa too and I had long hair . I wore it long for about a month and then at about 8 weeks got it all cut so it was even. I used to make up creative stories if anyone asked - such as "my 2 year old niece got at my hair with scissors"
The good thing, it grows back :)
Kimberly
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OOPS correction, i had retro - you know what is bad, i dont even know what i had and that has nothing to do with my brain tumor!
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Wendy.....I hope you are doing ok by now, since you've had your surgery. I'm thinking of you.
I saw my doctor on Friday, and he took out the stitches. Everyone was right....it didn't hurt at all. The problem after I got home was I discovered he left some stitches in!!!! I was kind of upset. I wanted ALL of them out! I don't see him for 9 more days now. I guess I'll call his office and make sure it's ok to wait that long to get the rest of them out. He did mention keeping the skin out of the sun....like most of you have said. He said I can't get any water in my ear.....(this is b/c of the SPF, that they had to go in again and operate. They completely closed off the left ear and sewed it together). He said the skin in that ear is VERY thin, and I could leak spinal fluid out of there again....if I'm not careful. So, can't get that ear wet.......which means I can't wash my hair very often. I do put cotton balls rubbed in vaseline in the ear to help that no water gets in there. He also said I can't get my hair cut, until I see him again in 9 days. Now, I feel I'm going to have to get a scarf or hat, b/c my hair looks so messy. He also said to start taking walks during the day, so I do need sun protection, which a hat would work for that, too.
I also asked him about my vision. I can read books with kinda big print, but I can hardly read the newspaper. He said that is common, and will last about 6 months.
I never heard this before??????? Anyone??? Also, I have terrible time with taste buds, nothing tasts the same, and he said that would also last about 6 months.
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Lacey -
good to hear from you.
First of all, are you sure you still have stitches in your incision? The reason I ask is because shortly after my AN surgery I saw my ENT, who is also a facial plastic surgeon, and he removed some small hemangiomas from my scalp and put in several stitches. He removed the stitches about a week later and I was convinced that he forgot a few as I could feel "bumps" on my scalp. I was certain that the bumps were thread, so I made an appointment. I turned out to be totally wrong :-[ My ENT told me that doctors "very rarely forget" to remove stitches.
As for your vision and taste buds, they should improve in time, but I'm not sure any doctor can tell you just how long it will take. I didn't have the vision issue, but I had the taste bud issue - and also "metallic mouth". They both went away in time, but in my case it was longer than 6 months.
Jan
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Hi Lacey, Interesting about your ear not allowed to be wet. I had muscle put over my ear drum that was removed and never was told to try to keep it dry. That would be quite tricky to do!
Did you call to ask about the remaining stitches?
The poor taste is quite annoying. I had some trouble for a while after 2001. I have continued to have a salt rt half of the mouth ever since 2006. This springs surgery is giving me weird taste. Kind of salty plus kind of sourish or bitter too. It still gets dryish at times but not quite as bad as at first.
I know it seems like getting beter is not easy but it will be better in time. Just longer than what most ANers have to go thru!
Take care, Cheryl R
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Hi Cheryl, Jan, & Kim,
Thanks for answering me! I didn't call the Dr's office today. I had my husband look really good at my head....and he thinks it might be scabs???? I'm not sure.
It's exactly in the same row as the stitches, but it's a straight, hard line, with picky things in it??? It's hard to describe. You are probably right, that doctor's rarely forget to remove stitches, especially since it's right next to where he removed them. I do see the doctor in 8 days. I'll just wait and ask him then.
As far as my ear not getting wet, he means until I see him again in 8 days. Then, I "think" I can.
So far, I have only seen relatives and neighbors. They all say I look good. To be honest, I know I don't........I look pale...and like I've been sick.
I went to the grocery store with my hubby today, for the first time. I ran into a nurse, who goes to my church. She didn't know I had surgery, I'm sure, by her reaction. She said "hi", then "boy, do you look (pause)....(pause), tired!!!!!!! I laughed, then told her what surgery I just had. So, that proves that the relatives are just trying to make me feel better!!!! I wonder what word the nurse I saw wanted to say????? I think it was "awful"!!!!
I did buy a hat, to wear when I go out. It will cover the incision, and also cover my hair, until I can get it looking better.
Anyone else run into people who don't know what to say??????????
I know I will get better in time, thanks for confirming that, Cheryl.
I'm glad I have all of you to confirm everything I'm going thru.
Lacey
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Lacey -
I'm betting that scabs are the culprits - not stitches - at least it sounds like that.
As for your appearance, since I can't see you, all I can say is you've been through a lot - correction, a real lot. IMO it would only be natural to look tired - afterall, you've just had brain surgery :P
Jan
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My scar is behind my ear and my hair really long so it covers everything, but i do not do pony tails cuz i also have the scar on my neck of the reconnection of thw two nerves. But when someone ask i say that i got into a fight in a bar and a chick cut me! So everybody laughs whe they ask. But some other people get distracted by my pulsie also. I guess wearin a scarf around might be cool, but do not wear hand bands cz it hurts :(
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Carlita, I love that bar fight thing! I told one person that I was scuba diving and had a bad incident with a shark.
I think I'm a little proud of my scar and sometimes am going to wear my hair in a pony tail! To me a scar is an indication that the person went thru something and most likely came out stronger.
Almost everyone I have talked to has never heard of an Acoustic Neuroma and for whatever reason I don't feel weird about telling them all about it or showing the scar.
Have a great weekend everyone :)
Kimberly
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Kimberly,
I agree - we EARNED these scars! I put my hair in a pony tail every now and then, but wouldn't you figure the one time your scar actually fades and can barely be seen is the time you don't care if it shows or not! :D
I love the shark and bar fight stories. I'll have to think of a good one myself. Maybe "an old football injury"?
Lori
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Hi Lacey,
Sorry I'm late coming to this thread. Since my surgery I've been having major problems with my back and have not been online very much. Thankfully, my back is much better although it still hurts. Also thankfully, this has been my major complaint. I'm not sure it the pain is radiating down from my neck, which is still kind of stiff or if it's from the really uncomfortable hospital beds. I'm sorry to hear you're really having a rough time. I have been very fortunate in not having anymajor problems with my taste buds. Food tasted off for a couple of day for me so I think like everything else with ANs, how long each problem last is a very individual thing. I hope it doesn't last the six months the doctor is predicting. I'm sure your family and friends are trying to reassure you when they tell you how good you look. You have been through two major operations in a very short time so you probably look much better than they expected you to. Hopefully you are truly on the road to a great recovery and you will soon be back to your usual self again. I'm sure you can't wait to wash your hair again and I know you'll love that first shampoo. Until then, rest, nap often enjoy being pampered and take care of yourself.
Wendy
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Lacey, The tongue and taste bud problems do go away. My tumor was a little larger than yours. It took about 9 months for the taste problems to clear completely. I want to assure you that the problems do go away, a little at a time. I found that short meals were easier to tolerate. A long meal required lots of chewing. As the nerves would tire, I'd notice more taste problems. When my tongue made me too miserable, I'd have a piece of chocolate.
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Some suggestions
Lacey - if you are not supposed to get the ear wet for an extended period of time (past when you see your dr) you might want to have a custom earplug made - my son had these when he had ear tubes as a toddler.
Wendy - have you thought about seeing a chiropractor? Hope you are feeling better every day!
I mostly wear my hair down since my June 12 translab, but have worn it up in a ponytail when it's hot, and no one has run away screaming so I think it's ok.
Tammy
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Tammy,
Hi and thanks for the chiropractor idea. It's such a simple and good suggestion I don't know why I didn't think of it myself. I will check with Dr. Choe and make sure he thinks it's okay and if so, get a referral from my PCP.
Wendy
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Mary,
They must make the incesion in a different spot with Middle Fossa than with Translab.
Late to post but...
Yes, the incision for middle fossa is in front of the ear. It is a "Backward C- shape" that is in front -- and-the bottom of the incision is even with the top of my ear circling close to the temple and up around forming that backward C.
Regarding the hair, I went in with my hair down. They shaved around my ear leaving the top layers intact. During surgery, they put a white dressing wrapped around my ear with all of my hair coming out of the top...They kept that bandage on (and relatively tight at that) until I was discharged four days later. I asked about it and there was a reason for it which escapes me now.
Kate
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I think the reason for it is to give the nurses something to laugh at! :D They might be having a bad hair day, but they still look better than we did post-op! :D
Lori
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Hi Wendy!
Glad to see you posting again, but I'm so sorry about your back pain. The hospital beds are really uncomfortable, but maybe that isn't the real cause.
I had alot of pain in my neck after the first surgery, and I think it was the position they held my head during the AN removal.
I hope you are feeling some better by now.......or soon will be.
I went back to the doctor and what I thought was stitches left in WAS a big scab. The doctor said I could put an antibiotic cream on it once a day, and within 4 days, it fell off!!!!!!
I was able to get my hair cut last Friday, so it looks much better......at least it is evened up in the front.
I STILL can't take a "real" shower yet......still have to keep that ear dry for another week.
I noticed someone posted about depression on here. I have a brochure from the doctor that said "it's normal to have down days and depression for awhile after this surgery". I have felt that way, too. My hubby golfs every Sat. and Sun., and that got to me this weekend. I don't feel like I can drive yet, so I had a long talk with him about feeling so alone. He still went golfing today, but at least he is still able to live his life. I don't want his life to stop.
I know it will get better. Just takes time.
I was glad to read all the other posts from everyone. I didn't realize that the incesions are different with the different kind of surgeries.
Thanks everyone, for answering me.
Lacey
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One other question.
Did anyone get a yeast infection either from the antibiotic, or steriods? I have a bad one, that after taking 3 different treatments from the drug store, still won't go away.
I will call my GYN tomorrow and try to get in to see her.
Just curious to see if the strong antibiotics did that to anyone else.
Lacey
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Hi Lacey,
Every time I have a bad sinus infection and need antibiotics I end up with a yeast infection. There is a pill the Dr can prescribe and you normally only need the one and it kills the yeast infection in its tracks. I can't remember the name. There are a few nurses on this forum I'm sure they know the name. I think its call Duflucan...something like that. My memory is great these days.
Anne Marie
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Hi Lacey,
It sounds like you are feeling better except for the yeast infection. Sorry to hear you still can't take a realy shower yet but I'm sure the haircut perked you up. Did hte doc give you any idea of when you'll be able to take a real shower? It's amazing how the little things we've always taken for granted can make us so happy. I am on a strong antibiotic right now because of my leaky head and although I don't have a yeast infection (yet) this is a concern for me since it happened to me once in the past. I am thinking of getting Dannon's Actiiva yogurt in the hope of heading one off -- I've heard it helps although I'm not sure it would help once you have the infection. Getting to the gyno is a good idea.
I had a lot of post-op neck pain too and asked my doctor if my back pain could be from my neck. He said it was possible although he thought the hospital beds were most likely the cause Thanks to Tammy's suggestion I asked him if I could see a chiropractor and he gave me his okay. I'm very hopeful this will help.
Take care and I wish you a much smoother and speedy recovery,
Wendy
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Anne Marie,
I think you're right - I recall the name of that one time thing to be Diflucan. Also, eat lots of yogurt to keep the healthy bacteria - healthy (for lack of a better word..).
Lacey - glad you were able to get a haircut! I know I felt a lot better after I was able to get one!
Lori
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The, um, yogurt, can always be well, uh, applied topically. As long as it's plain. :D It works.
M
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REALLY??????? I never knew that. Applied topically????????? Humm.........................
Wish I would have known that last weekend... Never heard of that. Thanks, tho. I do have an appt. tomorrow at 2pm with the GYN.
Thanks everyone. I can't stand this anymore!
Lacey