Author Topic: 11 days left until translab!  (Read 7360 times)

Manders

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11 days left until translab!
« on: April 30, 2012, 07:48:47 pm »
So this is it. Only eleven days left until my translab at the Cleveland Clinic. Lots of thoughts running through my head, but mainly I just want to enjoy my last week and a half doing everything that I normally would. I know there's no point in fretting over the inevitable and I don't want to be miserable now when there's no reason for me to be.
I know this entry has probably been posted a million times, but as always I'd love to hear any stories, advice, suggestions, encouragement from any post-surgery patients who'd like to share. Especially if you've had translab or a tumor close to my size (1.3cm). How were you feeling 10 days before your surgery? Is there anything specific you did to prepare for it? What did you regret doing or not doing before and after surgery? What did you take to the hospital (and what could you have left at home)? How long was your hospital stay? And of course anything else you'd think it would be good for me to know beforehand.
Thanks a million in advance! You guys are all terrific.  ;D
Diagnosed February 2012 * 1.3cm tumor * Experienced sudden & total hearing loss in 2007 in right ear * Translab scheduled for May 11, 2012*Follow my blog at: www.awkwardturtlesan.blogspot.com

Suu

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Re: 11 days left until translab!
« Reply #1 on: May 01, 2012, 03:36:51 am »
G'day M

The week before my surgery I went 'weird' and smiled at the funny side of life.  I thanked salespeople for their smiles, I helped old ladies with packages and getting up from a sitting positions, I told a child to stop screaming in a supermarket, and I took my granddaughter (11 at the time) shopping for clothes.
It was one of the best weeks that I can remember.  Hubby was naturally worried but I kept telling him that I wanted to do a few little things that I would not normally do (like telling a screaming kid to stop screaming  ;D)  I didn't want it to be a normal week of housework and ironing.  This was a special time and I lapped it up.

My granddaughter asked my doctor to please leave the funny bits in!  ;D

Have a smile at life dear friend. As your personal text says - God's fingerprints are everywhere.  I wanted to leave a few of my own on people's lives too. LOL

I'll look for your posts and others' answers here as well.

Hugs,
Suu xxoo
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

mindyandy

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Re: 11 days left until translab!
« Reply #2 on: May 01, 2012, 06:27:16 am »
Hi Manders
You are so calm about this. Very good point about why fret over the inevitable. Enjoy yourself. Take to the hospital chapstick and comfortable clothes. I did use my smartphone and computer after a couple of days. Just a little at a time. Don't want to overwhelm yourself. 10 days before my surgery I was a nervous wreck. The closer to surgery to more I just accepted it. I had recovered fairly well. I am now 2 months post op. My balance recovered well. We went to mall of america last weekend and we rode the rides all day Friday. Yep I said rides & no dizziness. I did steer clear of the rides that did nothing but spin but I did do some.
You'll do great and will be posting here as a postie in no time.  ;)

Mindy
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

CHD63

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Re: 11 days left until translab!
« Reply #3 on: May 01, 2012, 07:01:01 am »
Amanda .....

I've been following your Awkward Turtles blog ...... my suggestion would be to stay away from scary pictures or negative posts on this forum or the Internet ..... does not do a thing for your emotions to see or read them.

You will do fine.  The first three days you may feel a little rocky, like you've been on a bit of an amusement park ride, but things usually quickly turn around and the sooner you are up and walking, the better it will be.

If you will have friends and family coming to visit you, they can always bring things to you that you decide you would like to have.  My first go-around I did not want to open my eyes, let alone read anything or watch TV.  Second go-around I was playing/reading my iPhone on Day 3.  You just never know about the vision thing.  My advice would be to take your own robe and slippers, your glasses (may need to remove the AN side bow ..... mine are the stretchy kind so they spread far enough to go over the bandage) if you need them to read, your own favorite toothbrush and paste, the infamous Chapstick, and that's it.  For me, it was much easier just to use their hospital gowns because of the IV, etc.  Anything else you want, someone should be able to bring it to you or you can buy it in the hospital gift shop.  One thing I did not take from home (and wished I had) was a shower cap to use when I was first allowed to take a shower. (Both times, I could not take a shower until I was discharged, but could not get my head wet until the stitches were out at Day 8 for me).

Best wishes and many thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

pjb

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Re: 11 days left until translab!
« Reply #4 on: May 01, 2012, 07:31:43 am »
G'day M

The week before my surgery I went 'weird' and smiled at the funny side of life.  I thanked salespeople for their smiles, I helped old ladies with packages and getting up from a sitting positions, I told a child to stop screaming in a supermarket, and I took my granddaughter (11 at the time) shopping for clothes.
It was one of the best weeks that I can remember.  Hubby was naturally worried but I kept telling him that I wanted to do a few little things that I would not normally do (like telling a screaming kid to stop screaming  ;D)  I didn't want it to be a normal week of housework and ironing.  This was a special time and I lapped it up.

My granddaughter asked my doctor to please leave the funny bits in!  ;D

Have a smile at life dear friend. As your personal text says - God's fingerprints are everywhere.  I wanted to leave a few of my own on people's lives too. LOL

I'll look for your posts and others' answers here as well.

Hugs,
Suu xxoo

Thank you again for one of your wonderful posts I love to read yours and I always wanted to tell that screaming child to be quiet but never did so glad you did feels almost as good ..haha.

Best Wishes,
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

cindyj

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Re: 11 days left until translab!
« Reply #5 on: May 01, 2012, 07:42:18 am »
Hey, Manders!  As the others mention, Chapstick!  That was really all I took into the hospital with me.  I never came out of their lovely selection of gowns and I didn't read or use computer until I was out.  As Clarice said, try not to read anything negative these next days - here or other places.  I was not worried about the surgery itself, really, but was quite worried about getting sick before it.  So, I was ultra careful about using hand sanitizer, not going to too many public places (especially where little kids were), etc.  I did not want surgery postponed due a cold  :o

You are in good shape and young, so you will do great, I'm sure ;D 

cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

james e

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Re: 11 days left until translab!
« Reply #6 on: May 01, 2012, 07:50:52 am »
I like to do things that please me. I was a wood worker in my previous life, and I spent a lot of time working on projects...it made me happy and it gave me a purpose. I like to read your posts, and your blog, so I assume that writing gives you a lot of pleasure. Maybe you should start a diary about your AN, and your experiences as you are treated. It might turn into a book.

I had a stroke 3 years ago. I had a hole in my heart...a PFO, a birth defect, that opened up one day and caused the stroke. I had to go to speech therapy school to learn to talk. I have permanent short term memory loss, and I have a difficult time remembering what to call some items...is that a hammer or a lamp? I felt very lost for a long time and would not go out in public, embarrassed about not being able to speak but every third or fourth word in a sentence. I could not remember conversations from start to end.

I got better, but what really helped me the most, were some books about people that were brain damaged from strokes or accidents, and what  their experiences were. I read them over and over. Sometimes when I got to the end of a sentence, I could not remember what I had just read...my brain was still swollen and it just would not remember. Just reading about people who went through this same experience helped me gain confidence that my life was going to get better. I might not heal completely, but I would learn to adapt and accept my new life.

I would encourage you to start writing a book. You are smart. You are capable. It will give you a purpose.

I had a surgery to fix my heart and I have no physical limitations. I lift weights every day and walk 3 miles every day. My short term memory is still very bad and I still have a hard time remembering my grandkids names. I know a hammer is a hammer, but I'm not sure what to call it sometimes, but I understand why I am that way, and smart people like you have made my life more acceptable and my life is wonderful.

Start your book today.

I was in the hospital for a 10 hour translab surgery. There was no pain. I ate breakfast the next morning. I walked right after breakfast. I went home the third day. It was a wonderful experience. I know that sounds funny, but I never felt sorry for myself...never on the pitty-potty. I knew I was getting better and I was happy about it. Your writing makes me feel like you are anxious in a good way to start  getting better, and I am excited and happy for you. Take a pen and some paper to the hospital and you can help turn someones life around. You are smart...don't waste a good opportunity.

James

Manders

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Re: 11 days left until translab!
« Reply #7 on: May 01, 2012, 09:48:34 am »
Thank you all for responses! I'm doing my best to soak it all in and put all of your advice to good use. Chapstick is definitely at the top of my packing list. I'm already a Chapstick-fiend anyway so I'll be sure to have lots of it with me. I'm only planning to take a little knapsack with me and I have no doubt everything I need will fit into it. Hopefully, I have a short hospital stay as it seems most of you have!

Cindy, I definitely know what you mean about not wanting to get sick. That's actually probably my biggest worry right now. I just finished performing in a show and several of the cast members were sick (one even had mono!) so I've been taking Airborne and I was put on an antibiotic as a precautionary measure and of course I'm washing my hands as often as I can. I work at a doctor's office too so I'm trying to be as careful as possible.

Also, thanks to all of you who've been keeping up with my blog and, James, I will definitely keep your suggestion in mind. I do love to write (Creative Writing was actually my minor in college) and who knows? Maybe something will come out of all of this. I know I've really appreciated being able to read about others' AN experiences and I know that there will be people who can benefit from mine.

Another question, how many of you need to use canes/walkers/etc to help you get around after surgery? Is it fairly common to need these things?
Diagnosed February 2012 * 1.3cm tumor * Experienced sudden & total hearing loss in 2007 in right ear * Translab scheduled for May 11, 2012*Follow my blog at: www.awkwardturtlesan.blogspot.com

Jim Scott

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Re: 11 days left until translab!
« Reply #8 on: May 01, 2012, 01:37:19 pm »
Another question, how many of you need to use canes/walkers/etc to help you get around after surgery? Is it fairly common to need these things?
Hi ~

I had a (borrowed) tripod cane ready to use when I came home from the hospital - but never came close to needing it.  I walked lots to regain my balance and it paid off.  I trust that you'll have a similar post-op experience but I would have a cane handy...just in case (then be determined not to need it).  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Suu

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Re: 11 days left until translab!
« Reply #9 on: May 02, 2012, 01:36:34 am »
I'm back on a walker and/or crutches when needed.

If you feel the need to use a walking aide then please use one.  It beats running into walls  ;D  I don't know how common it is for others and it's good that you asked the question here because I'd like to know too.

You may not need one at all and that would be fantastic!

Hugs,
Suu xxoo
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

james e

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Re: 11 days left until translab!
« Reply #10 on: May 02, 2012, 07:35:02 am »
You have said that you are a rabid exerciser, so you are probably very strong. Your muscles will not fail you. Your brain will be sending you some funny new messages, and you will be depending on your strength to keep you vertical...muscles good, brain not so good. The good part is your brain will quickly begin to learn, and you will quickly learn to adapt to these new messages. My surgery lasted 10 hours, and 14 hours later, a therapist strapped a heavy canvas belt around my waist, and helped me get out of bed...I was still in intensive care. She kept her arm inside the belt, across the back of my waist, and we started walking. I was tired and wonky, and she was complaining that I was walking too slowly. I am an avid exerciser also, and here is where attitude comes into play. I know you have worked yourself to exhaustion exercising but you still have two more sets to do, so you just tell yourself, "I can do this!" so you just bear down and do it! That is what I did...just get it done. Later that morning I was put in a regular room, and nobody said I had to stay in bed, so I started walking on my own. At first, I only walked in my room, but by noon, I was walking in the hall way. There are hand rails there, and the nurses said I had to use them. When they were not looking, I did not use the rails, but I got caught, and pretty soon it became a game. Everyone has a different type of recovery. Some of it is physical, and some of it is mental. Some recoveries are slow, and some are fast. Excellent health is key to your physical recovery, and mental recovery is all in your head. It is just like exercising...just do it!

James

CHD63

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Re: 11 days left until translab!
« Reply #11 on: May 02, 2012, 08:14:06 am »
What James said is very true ..... but with one caveat.  This is really not a good time to be heroic or "look Ma, no hands."  The last thing you want is a bad, jarring fall with far more serious injuries.  You do need to push yourself at first, but please do it safely.  Walking and more walking in a safe environment is the best way to quickly adapt to the brain messages now only coming from your remaining good vestibular nerve.

That being said, since (in my case) I have NO functioning vestibular nerves on either side, I did use a walker for about 10 days after my first surgery (none after the second).  And used a cane for safety for several months.  I rarely use it now unless I am ill from something else and weaker than usual.  I use it then again for safety.  I was in vestibular rehab for months and still revisit some of those exercises when I feel the need.  Remember, mine (or NF2 people) is a rare situation so you should quickly adapt.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

cindyj

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Re: 11 days left until translab!
« Reply #12 on: May 02, 2012, 08:48:24 am »
No cane, no walker, no need (for me - we are all different)...however, those first few steps were very strange and I was a little apprehensive initially.   I held on to the PT for dear life.  But after that initial "run" there was no stopping me. 

It may really depend on how much your brain has already compensated for the bad side...

Nap and walk, nap and walk...yes, in safe environments ;D

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

JerseyGirl2

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Re: 11 days left until translab!
« Reply #13 on: May 02, 2012, 11:00:44 am »
My experience was like Cindy's -- no need for a walker, cane, wheelchair, etc., but also like Cindy, I was holding on tight to my tall, red-headed PT for the first few steps! After a couple of minutes, though, he said I needed neither him nor any therapy, and he was correct. I just kept on walking, walking, walking around the hospital corridors. As Cindy writes, I also think a lot depends on how much your brain had already compensated pre-surgery.

Best wishes,

Catherine
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

Manders

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Re: 11 days left until translab!
« Reply #14 on: May 02, 2012, 01:06:01 pm »
Actually, Catherine, that was exactly what I was about to ask you and Cindy. How much of an issue did you have with balance prior to surgery? I have had absolutely no problems with dizziness or balance, just hearing loss and tinnitus, and so I'm worried I'll have a bit more trouble adjusting afterwards.
Diagnosed February 2012 * 1.3cm tumor * Experienced sudden & total hearing loss in 2007 in right ear * Translab scheduled for May 11, 2012*Follow my blog at: www.awkwardturtlesan.blogspot.com

 


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