question about hair.....

[kimberly]

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!

[lacey7]

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.

[leapyrtwins]

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 

[Cheryl R]

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

[lacey7]

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

[leapyrtwins]

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 

Jan

[carlita]

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 

[kimberly]

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

[lori67]

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!   

I love the shark and bar fight stories.  I'll have to think of a good one myself.  Maybe "an old football injury"?

Lori

[wendysig]

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

[Boppie]

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. 

[Tamara]

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

[wendysig]

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

[Kate B]

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

[lori67]

I think the reason for it is to give the nurses something to laugh at!      They might be having a bad hair day, but they still look better than we did post-op!   

Lori