ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: It is what it is on August 01, 2012, 12:53:21 am
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Well, I'm just a few hours away from becoming tumor less. I want to thank you all for being there for me through this process. This list is filled with angels. I'll write an update when I'm able.
THANK YOU. :)
Karen
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I am excited for you Karen. Your great attitude will get you through.
Looking forward to our next meeting. You can ride in the middle cockpit of the triple kayak, with my dog.
Kathy ;)
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Karen
You will be in my thoughts today. You will be a postie in no time. You'll do great and will be glad when its all done. Keep us posted and *hugs*
Mindy
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Thanks Kathy!! I am sooooo glad we were able to have our own mini support group in person before this surgery. Talk about angels---thanks for sharing your story and all the useful and practical suggestions you gave me. Yes, our next support group meeting may be in kayaks.
Karen
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Karen,
My prayers are going out to you today!! You are going to do great :)
Cheryl
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Thanks Mindy and Cheryl and Kathy. They are preparing me for surgery and I picked up messages for the last time. Your messages make such a pleasant and supportive way to go into surgery!
Karen
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Prayers ascending ....
You are in His hands as he directs the hands of the surgeons.
May a blanket of peace and comfort cover you as you wake...
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Sending more prayers your way this morning.
Best Wishes,
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Karen .....
Many thoughts and prayers as you are in surgery! You have good hands guiding the instruments inside your skull so I am at peace that you are going to do well today.
Clarice
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Good luck!
See you as a postie!
Jan
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Karen,
Prayers are being sent your way. I've been thinking about you all morning. You are in great hands!
Lisa
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Good luck! Hope everything goes as smoothly as possible.
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Good luck Karen...by now you should either out of surgery or close to it! Looking forward to hearing how it all went...prayers with you!
Jay
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Well, I now join the group as a postie. It is great to be on this side. My tumor decided to be sticky as it attached to the facial nerve so they weren't able to remove it all. I think I'm on the other side of vomiting and am thankful for my family members who flew out to California to be with me. The HEI doctors were great and St. Vincent staff are all phenomenal!!!
A 17 year old had surgery the same day so we will both be
included in the Magic Scarf journal since we were able to take his picture. Are their other teens on this list? It sure puts things in perspective for those of us who are older.
Thank you all for your kindness and support and let me know who to send the journal to next.
Karen
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So glad to hear from you Karen. You appear to be typing well. I remember how hard it was to make my first post look like I could type.
Will be waiting for more news later.
Kathy :D
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Karen,
Welcome to the other side. I'm so glad to hear from you, but sorry they couldn't get all of the tumor. I told the doctors that if mine was sticky and attached that I wanted them to leave some there. I wish you well on your road to recovery and can't wait to compare notes.
Lisa
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Hi Lisa,
Yes, they did what they needed to do in order to decrease facial paralysis. I am grateful and I totally trust these surgeons.
How are you and everyone else on this side of treatment? My respect for you has only increased. Life is good.
Karen
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Hi Kathy and all,
I posted a response and then shut down my phone when a nurse came to the room. It doesn't look like the reply was entered.
My respect for all you posties has increased. The support to each other and those new to the list is invaluable.
With warmth and caring to all.
Karen
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Congrats on making it through surgery! ;D I, like Lisa, also had an understanding with my surgeons that they would leave behind tumor to preserve the facial nerve. I was told without the blood supply from the larger tumor mass the cells should die. Take care of yourself. Best wishes.
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Thanks! That's very encouraging information for me to hear right now! :)
Karen
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We are back in Seton Hall waiting for the appointment on Friday to remove staples and stitches and have followup exams. It was great to go for a walk outside balancing on my husband's arm as we smelled the fragrant flowers in sunny California. Life is good. Hope all of you are doing well.
Karen
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Hi Karen
Glad to hear your doing great. You take it easy and rest walk rest walk. LOL The House team & St Vincent team are wonderful and I'm thankful for having such wonderful surgeons and care there.
Mindy
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I agree with you Mindy? :)
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Glad you made it through surgery ok and your on the other side of this! Congrats and keep staying positive.
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Thanks and the same to all of you who have paved the way for those of us who are following.
Karen
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Karen,
How is your balance? Mine hasn't been the greatest. I feel like I'm under the influence all the time and I'm not sure if this is what people describe as wonky-head.
Lisa
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Hi Lisa, my balance is also strange. I keep reading other's words to try to describe this sensation to my family. Thanks for sharing you are still experiencing it. It helps me not to have unrealistic expectations that this will soon pass. Do you still have to hold on to someone or something for safety?
I loved reading your Caring Bridge. It helped me a lot.
I care
Karen
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Dear Karen,
Welcome to the other side! It is much brighter here! Your balance problems would be much reduced if you walked around with a cane. (Just a suggestion!!!)
I sometimes forget mine when I get out of bed to go to the bathroom. I should talk!
Luckily, I have a four poster bed which reduces my wobbliness when I grab it.
Good luck with your balance, as you know there is a lot of information on the balance forum.
Mike
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Karen,
At first, I was holding on to my husband's beltloop. I walk on my own now, but it isn't always easy. I thought about a cane, but I didn't want to rely on it. I went to physical therapy yesterday. I'm not sure if they are focusing on my balance as it was more strengthening exercises. I did get a copy of balance exercises from Clarice which I have found to be helpful. I can't remember her forum name off hand...it's something like CHD63. If you PM her, she will email them to you for when you're up to it.
Thanks for caring and for reading my CaringBridge messages. You've been through a lot as well and I think about you often.
Lisa
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Terms like bobble head make sooooo much more sense to me now. :)
I had to go on an antibiotic today due to bacteria but I'm practicing my balance exercises and walking on and off. It feels great to get outside. Others seem bothered by the heat in southern California. I'm enjoying it. Friday staples come out.
How are all of you?
Karen
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Karen .....
It sounds like you are on a normal track for recovery. Keep up the good work!!
I loved walking in the beautiful Seton Hall garden each morning while we were there ..... it was unusually cool when we were there in May last year so we walked outside as much as possible ..... with jackets on!
Let me know if you'd like the balance and gaze stabilization exercises.
Clarice
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Sounds like you are doing great they truly are a great team of doctors...Try to do as much Vestibular Therapy as possible it does help and you will be able to see the difference in no time ...
Best Wishes and welcome to the Wonky Headers....
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Thanks Clarice! Yes. I would love to receive the exercises. Is it possible to send by email?
The gardens are still lovely. ;)
I hope you are doing well.
Karen
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I feel honored to join the group of the wonky headers. It means I'm also joining you as a postie and I'm glad to be on this side. :)
I hope you are also doing well?
Karen
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Karen,
It is good to see your notes. At just one week, it sounds like you are doing well. Frequent short walks, naps, balance exercises and time. Your body and brain will adapt with time. I found that I felt better and stronger once I got myself onto just Ibuprofen and Tylenol for pain.
Waiting for more updates on your progress..
Kathy
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Thanks Kathy. I stopped pain medication before discharge. Sleep is a challenge but I'm thinking that will happen better after I'm off steroids?
Karen
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I don't know if I'm a rare breed, but I have been off the steriod for a week and half and I'm still not able to sleep. I'm glad they gave me ambien for night time. I also don't nap most days. I had it in my mind that I would be laying on the couch day in and day out. It's has been far from it. Today I made chocolate chip cookies, went shopping for my son's birthday gifts and went to dinner with friends. I can't seem to sit still. Maybe I'm overdoing it. I worry that it's going to hit me and I'll be totally exhausted.
Karen - sorry to hear about the bacteria. Is it around your incision?
Lisa
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I'm laughing as I read about your incredible energy level. Your little guy won't miss anything this year on his birthday even though his mom has gone through all you have. Amazing!
Karen
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Lisa-incredible and wonderful! Karen-best wishes for a good recovery and thanks for sharing with us newbies. Millie
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Karen,
So good to have you as a postie! Congratulations!
I didn't have to have any staples or stitches removed, but I had translab with Dr. Slattery. He gave me the list of vestibular exercises at my post-op appointment so maybe you will get them tomorrow.
I still feel weird, but I have been able to walk multiple laps around our big circular driveway, without assistance. I can even walk the dog on leash and have been doing so for weeks now. We live out in the country and the ground is very uneven. I was nervous at first but I am now able to walk about a half mile at a time, if it's not too hot outside.
I miss the cooler southern CA temps!
Again, glad to see you posting again and keep us up to date on your progress.
Liz
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Lisa,
You are the Energizer Bunny! What's your secret?
Liz
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I think maybe I'm overdoing it and need to slow down. It could be why I continue to have headaches.
Lisa
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Lisa,
What kind of headaches are you having? Do they involve your whole head or are they radiating out from your surgery site?
Liz
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Sometimes they start at the incision site and radiate, but then are just all over headaches. So I guess that's both kinds. Luckily, and cross my fingers, they haven't been debilitating. I wonder, though, what would happen if I stopped all meds.
Karen - are you having headaches? I know you had mid-fossa too. I hope your appointments go well today.
Lisa
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It has now been 22 days since surgery with HEI. I'm amazed at how carefully they cut the scalp around my long hair so that even immediately after surgery I could comb hair over the staples and no one could tell I'd just had surgery. Reading the surgical report by Dr. Schwartz was enlightening. He's obviously a very gifted surgeon. Bobble head and wonky head are improving. The vestibular symptoms are the most challenging and the only thing reminding me that I just had brain surgery. I didn't need to use pain medication after discharge. So, all is better than I had imagined at this point. I'm scheduled to return to work the beginning of September and was hoping I'd be ready to drive then as well. I'll see how I feel by then.
Thanks again for all the support along the way!!!!
Karen
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Great news, Karen! Carry on!
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Wow, Karen, you will be returning to work around the same time I do, and your surgery was 4 weeks after mine. That is remarkable. Congratulations!
Liz
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Thanks to everyone for all the support.
Liz, I also live in the country but I have an easy drive into town. I'll let you know if I am actually able to return to work as planned. Who knows at this point????
Lisa, are your headaches improving? I've had some head pains but no ongoing headaches.
Karen
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Are you going to be able to make it back to work when you planned? Hope everything is well.
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I start back to work full-time on Tuesday after taking off the month of August. Actually I caught up on paperwork and returning work emails and phone calls this past week. I walk/hike two times a day and do all the vestibular exercises daily. But, I mainly sit at my job. It'd be a different story if my job was physical in any way.
Karen
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Wow Karen, I am impressed that you are going back to work on the same day that I am. I've been off since June 28th and my surgery was on July 3rd.
Keep us posted on how it's going!
Liz
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Thanks Liz, but if I was in your profession with your job, I wouldn't be able to return to work this soon.
Karen