Chiari Malformation Community
Surgery scheduled
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Surgery scheduled

Well, I met with my NS and I am having my decompression surgery on January 8th.  I am very nervous.  I wasn't until this weekend and it hit me how bad it is going to hurt to recover.  However, I look at my beautiful 8 year old daughter and how she has had two surgeries for her Chiari and how GREAT she is doing and know that I need to be brave just like her.  Do any of you have any suggestions of whether to cut your hair prior to the surgery?  I know how big the scar is because my daughter has one, but, she has long thick hair, so it does not even show.  I have medium length hair, but, it is unruly all of the time, and I am thinking that if I cut it short it would be easier to take care of and keep my scar area clean. Any suggestions?  Also, where was this special pillow sold that I have seen on the forum board?  I have been unable to find it.God bless you all.
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620923_tn?1405964489
HI, I am glad to hear u have ur surgery scheduled. I have not had surgery for this yet and I would imagine the NS can tell u haow he prefers ur hair to b......everyone has said different things as to what their NS has done in regards to their hair, that I feel it is a personal preference of the NS.

I did see the pillow available once b4....I will look for the link for u and PM it to u.


All my best to u with the surgery and recovery!!
Godspeed
"selma"
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539750_tn?1226525277
Hi Selma,

Can you PM me the link for the pillow also, I will most likely need it!  Thanks!

Daisy, good luck with your surgery...mine is scheduled for the 29th and I know I will be freaked out like you just before.  I know everything will be fine and at least you do know what to expect...
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620923_tn?1405964489
Done Kim.....
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Avatar_f_tn
Hey you guys!  If Selma was unable to find the site for the Chiari pillow let me know!  I have one and it has been wonderful!  I take it with me anytime I go on a trip.  As far as your hair- it's a personal preference for before the surgery.  This is what I did though- I had short (to my shoulder) length hair and it is very thin.  So the day before the surgery I got a cute short sassy cut!  It was liked stacked- shorter in the back and longer on the sides.  Now- people see me from the front and can't even tell I had major brain surgery!  :)  First comment is oh- cute cut!  Then I turn and let them see the back!  Plus- it DID really help with the healing process.  Plus- I had to go 10 days without washing my hair- if it had been much longer it would have been terrible!  Now that I am like 9 weeks post op the hair is growing back and it almost looks like the same cut I got right before the surgery.  It is completely up to you what you do about your hair- but I wanted to share what I did!  Good luck with your decisions and good luck with your surgery!  You will be in my prayers!  Oh- and your first comment- recovery isn't that bad!  The pain was completely managable with pain medicine.  I don't remember ever being in horrible pain!  Hope this helps.
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Avatar_f_tn
THank you for sharing that!  I know it is silly to worry about the hair, but, I do not have a good style to begin with because I have been trying to grow it out, but, I know how hard it was with my daughter to keep that hair around her incision clean -- this is gross, but, it took about 6 washings to get all of the dried blood out and I do not want to worry about that.  I am so glad that you told me about the pain management, I have been so worried about hurting that bad and having my two children.  I am so use to doing everything for them and for the past few months I have been useless, and I am having a hard time knowing that it will be much worse. But, it will be better after I heal.  How do you feel now?  How long was it before you were able to drive yourself?  Do you work? If so, how long before you went back.
God bless you!
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Avatar_f_tn
Hey Selma...I ordered my pillow, so, it should be on it's way soon.  I am just a planner and want tohave everything done so that it will make my recovery easier on my family!  You are such a great person to always post to my questions and you are very informative.  I just wanted to tell you THANK YOU!
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539750_tn?1226525277
Okay, I want to know about my hair too.  I have thick wavey/curly hair that goes to the middle of my back (which I sometimes flat iron).  It takes like a year for your hair to grow 6"...so it would take about 2.5 years to grow to where it is now.  Should I chop it?  I have never had hair shorter then shoulder length and I am worried I won't look good with short hair...booo!!!  I am thinking of going to get my hair cut this weekend (a trim) and talk with my sylist about what I should do...
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555358_tn?1292535661
The first week or so after surgery you might be in some pain, but like Lovemygirls said, it's managable with pain meds. After that it's mostly just soreness, slow moving, and fatigue.

As a guy, I wasn't so concerned about my hair. I just told them to shave me bald :). My avatar is a picture of the back of my head after a couple of weeks. My hair growns fast.
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620923_tn?1405964489
u r welcome....I hope u like the pillow!!!

: )

"selma"
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Avatar_f_tn
I understand your concern about having two kids.  I have two myself- they are a little older (9 and 6) and I do alot for them too!  Luckily, they were able to go to school during the day to give me time off and then for a week or so my parents came to help at night or my husband tried to change his schedule around.  Honestly- I was pretty worthless to them before my surgery!  My oldest said the other day, Mommy before your surgery you came home from work and either laid in bed or on the couch.  So- even with managable pain- I was better for my kids after surgery.  To answer your questions- I am doing really well!  I am about 10 weeks post op- the time has flown!  Sometimes I have a "normal" headache after a long day, but it's not a Chiari headache.  I am very blessed because all of my symptoms are gone!  I wasn't allowed to drive until I went back for my month checkup. (little over a month)  He told me at that appointment that I could drive as long as I wasn't taking pain pills.  I was so ready to drive- I didn't take another pain pill.  AND- I am a 5th grade teacher!  I was off for 7 weeks and then we had Christmas break.  So- I haven't really gone back yet!  I worked today but it was inservice- no kids.  And I have another dr. appointment Monday- so my first day back with kids is Tuesday!  I will let you guys know how it goes!
Good luck with everything!  You will be in my prayers and if you have any other questions just let me know
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Avatar_f_tn
Honestly- if your hair is that long- it would hurt my heart to cut that much off!  Obviously- you do whatever you want to do (you have to make the final decision for you) but with that long of hair- it would completely cover up the incision.  It might be a little bit of a pain until you get the staples out- don't know put it up in a clip or pony tail.  It would probably be annoying while you can't wash it- but afterwards- when you are several weeks post op and you could cover the scar completely up....that would be nice!

It's funny that all of us worry so much about our hair....but it is very real for us!  To quote my neurosurgeon, "You women and your hair!"  But- there is nothing wrong with us trying to figure out our hair issue.  When I found out I was having surgery- I saw my beautician that weekend and cried....."What are we going to do with my HAIR????"  She was the first person I broke down to...seriously!!  I understand!  :)
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Avatar_f_tn
Hey,
I know that both of you have surgeries comming up and are scared, but just remember how well things have gone for some of us. It took me a long time to decide to do this and
now am so glad I did. I will keep you both in my prayers and like everyone has told me,
it's just hair. I have done so well that even if they shaved my whole head, it would be worth it!!!!!!!!!!!!

Sissy
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Avatar_f_tn
Thanks Sissy.  I am very nervous about Thursday.  I am very lucky that I already know so much about a Chiari because my daughter has had two surgeries and how well she is doing. I have only had to suffer with my symptoms for a few month.  I know that there is nothing that I can do to help the Chiari without the surgery, and daily my symptoms are worsening.  I am on Meclizine and Darvocet around the clock but, I am still 'spinning, nauseous, and my head hurts."  I cut my hair into a short and sassy style like lovemygirls2 and am ready for what comes next. Keep praying!  :-)
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539750_tn?1226525277
Hi Daisy, good luck with your surgery tomorrow...I am sure ift will go great.  We hope to see you back on here very soon!!!
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