ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: mindyandy on January 11, 2012, 10:49:00 am
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Now that I finally have a date it makes it all so real. I feel like crying.
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Hey there. I know..I so know. You will go through a lot of different emotions now tot. Kind of each day or by the week. You are not alone and that is for sure. I am glad you do have a date. I just looked at the calendar mad I will be exactly 7 weeks ahead of you. Me translab you retro. I hadn't talked or written to dr. Friedman since our one phonecall but I did last night. He wrote back, "I will take good care of you Stephanie".... Made me cry. Hang in there .....and keep sharing, I think it helps more then anything!
Stephsf
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Stephanie
Thank you for the reassurance. I know that you know. My goodness...the anxiety is awful. Before I got my surgery date I emailed Dr. Friedman and he said that fear is understandable and that I will be ok. That made me feel good. I will have email him again for reassurance once my date get closer ;D. This place too makes me feel good. Every single person here is very caring and my goodness the best people in the world.
I am here for you Steph if you just need to vent or for anything.
Mindy
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Mindy and Stephanie .....
You both will be in the best of hands with doctors who are not only excellent in their field, but are truly caring and concerned physicians. As Dr. Friedman's wife told me at the last ANA Symposium, he considers it an honor that his patients allow him to enter their skulls and treats them with the care and expertise they deserve.
I was a basket case upon learning of the regrowth of my AN, eleven months ago now ..... but by the time I was wheeled in for my second surgery eight months ago, I was totally relaxed.
I pray that will be the case for both of you.
Clarice
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Hi Mindyandy - I felt the same way when I got my date. I have read on this site that a lot of people feel more at peace once they get their date but I did not feel that. When interviewing doctors and researching I was in a more logical state of mind but once I made the decision I was more emotional. You picked a great doctor so just have faith they know what they are doing! Best wishes.
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Stephanie and Mindy,
I have been where you both are. I was anxiety ridden,horrified and cried sometimes for hours at a time, alone in my bedroom when everyone else had gone to sleep. I had an 8 week old and a 2 1/2 year old at the time of diagnosis. For 3 months I did my own research for my surgery and took care of 2 babies at the same time. My eyes are tearing now as I write this. I want you both to know that you are going to be ok. It takes time. Be very patient with your bodies,brain,mind etc...walk,nap,walk,nap...don't do anything that will compromise the healing process,such as lifting or pushing yourself too hard with house chores etc...I really stuck to the post-op plan and had no problems. I couldn't hold my baby (who was 5 months old at the time of surgery)..it was a very difficult time for me emotionally also. But no matter what I wanted to do...I stuck to the plan. My husband would hold her and I would hug them both. My 2 1/2 year old would lay next to me in my bed while I read to him. After surgery I had some dizziness (nothing major), 1/2 of my face was paralyzed (this started about 2 1/2 weeks after surgery) and lasted about 10 days. I never had any headaches,no csf leak etc...the fatigue was pretty overwhelming for several months. Dr. Brackmann/Schwartz did everything they said they would do and my recovery went just as they said it would. I am fine. My life is great...I do have ssd...but I really don't care....I can live with it:)You will both be fine and all of this tumor, life altering crap will be gone:) Your lives will go on....Best wishes being sent from me to both of you!
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JAndews,
Just reading your words brings tears to my eyes. I very happy you are doing well. Hearing stories like this gives me a comforting feeling. I know a lot of people have been in our shoes and we will be the post op shoes soon. Thank you for posting your story and for all your kind words. It really does help. ;)
Mindy
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Jandrews--
Wow, a courageous woman you were and are! So, I am greatful my kids are 7,8,9,10,11 and15 (at home) and that they are not infants or toddlers for the fact they are more self sufficient now. I do miss little ones though! Your story is one that really does put things into perspective. You know how AN humor goes and the occasional tendency to blame things on thee AN. As I was dropping 4 of our kids at one school this morning, I always say, "Have a good day, I love you "as they trod off to class. Well today, I yell, "Have a good design".....????? And they just wave and look at each other like "what.". So I am driving away wondering if my AN had anything to do with the three cars I wiped out in backing up in 2007? Hmmm. I have been practicing mindfulness for several years because of the driving, breaking things and bumping into obvious obstacles. Makes me wonder if these have been all part of it or just life in general...age and hormones or AN related. Thank you Jandrews for sharing!,
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Can anybody tell me how much hair will be shaved for retrosigmoid? Anybody here have retro by Dr. Friedman? I have long hair would like to avoid getting it cut but I'm not sure if I'm allowed to put it up in a pony tail for surgery?
Thanks
Mindy
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Hi Mindy .....
I had translab and the abutment implant by Dr. Friedman and my hair was short at the time so more area was shaved and more visible for awhile ..... but I had retrosigmoids on both sides prior to that, by two totally different doctors in different states. Both of those times, no one noticed the shaved/incision area unless I pulled my remaining hair up to show them. In fact, most people did not even know I had had brain surgery unless I told them.
Clarice
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Mindy,
When I had mine done at Mayo, they shaved only the incision area. It was a patch about an inch wide and the incision went in a semicircle around and behind my ear from about two inches above my ear to about an inch below and just behind my earlobe. Long hair should cover this quite well I'd assume. What scar I have that shows now is pretty much camouflaged by the wrinkles in my old neck so I don't think anyone notices it. Not knowing what to expect I had my hair cut pretty short just before surgery as I though I'd rather my barber cut it than the surgical team. It turns out that wouldn't have been necessary but it was, as a guy, my point of view and it made sense to me at the time.
Rich
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Mindy,
I had retrosigmoid and they didn't shave ANY hair. I have long thick hair, so even if they had I assume that it wouldn't show at all. They used some sort of glue to part the hair on both sides of the incision during surgery - it took quite a bit of time to get rid of all the glue! They did pull some hair up during surgery in what seemed more like a "pig tail" rather than pony tail.
Marianna
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Mindy,
I had translab and had hair just below shoulder length. They just cut a little behind my ear and it is not noticeable. I did have mine cut to about chin length before surgery as mine is thick and I did not want to have trouble washing and drying it. and as it turns out, I am very glad I did. Washing hair was rather painful for the first several weeks. Today, 13 weeks out , is the first I have been to hair stylist because I was afraid head/ear hurt too much. anyway ,, hair has grown back enough that I had it cut some today! Just my two cents worth.....
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Anybody want to come have surgery with me March 7th? We could get a buy one get one free deal? ;D ;D
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I'm glad to see you joking, Mindy! I'm sure this feels like a roller coaster.
I'll definitely be there with you in spirit!!
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Liz thank you. This is a horrible roller coaster ride. Sometimes I'm ready to just do this and have a positive mental attitude and then minutes later I'm a big chicken. :-[
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Ahh...having trouble getting my reply to post, here goes again:
Same here! What are you most afraid of?
Your pic looks like you have kid(s)...how old?
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Twindy
I do have kids. I have a 12 year old and a 4 year old (one seen in my pic). Both boys. Your a preschool teacher. Hands down to you. I couldn't handle a bunch of little ones. I do like little ones but not all at once ;D
We shall keep each other posted on how are nerves are doing :)
What am I most afraid of? Hmmmm all of the above. Well besides the usual things to be afraid of I'd have to say facial issues and loosing my great hearing. What about you?
Mindy
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Ah, two boys! I bet they keep you busy!
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So, you've made your decision, Mindy...now, be at peace about it knowing you will be in excellent hands out there...all the way from Dr. Friedman to the nurses on the floor at St. Vincent's...even the anesthesiologist was exceptional compared to others I've met in previous surgeries, he even came to visit me post-op - never had one do that :)
Cindy
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Cindy
Thank you. I have made my decision. *sigh* I'm greatful to have such here wonderful people for support.
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Hey Mindy. I just want to remind you that the waiting until surgery time was agonizing for us too. I did adopt some positive mantras which helped. Also, when the anxiety about it comes on, a therapeutic tool you can try is called"stop therapy". When the feelings come..try visualizing a stop sign and say "stop" in your mind and even out loud. I have used this with my clients and with myself. I know how you feel, and you are on board with strong survivors and positive thinkers! Hope today is a good day!
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Thanks Steph. I will use the "stop sign" effect. I'm just so glad that there are people here to support me. It also helps knowing that you just had surgery w/Dr. Friedman and Janet is scheduled the 27th and I am the 7th. Dr. Friedman is a busy man. :D