Author Topic: Away from home  (Read 7050 times)

HisFireFly

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Away from home
« on: July 27, 2012, 08:46:46 am »
I'm not sure where this belongs -- but since it is a question about what happens after surgery, I'll guess here.

Assuming all goes well with my neuro-surgeon consult (as well as it went with the neurotologist) I will be having surgery in Saskatoon, a 6 hour drive from home.

What post-op care will be needed and how often?  Would it make sense for me to consider hanging out in Saskatoon somewhere for a period of time after being released from hospital?   ???
Learning more each day about leaning into His everlasting arms.

It is what it is

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Re: Away from home
« Reply #1 on: July 27, 2012, 11:19:43 am »
I am sending you healing thoughts and prayers.  I am scheduled for surgery on 8/1, so I can't speak to post op issues but I will be reading with interest responses you receive.  Take good care of you. 

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

Chances3

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Re: Away from home
« Reply #2 on: July 27, 2012, 11:20:48 am »
Hi HisFireFly,

Let me first say that no two experiences are the same.  You will have very little balance and in the early stages of recovery any head movement is like being on a ride at an amusement park.  The problem is this stage takes time, and I don't think you want to be hanging around the local area for days.  I know I wanted to be in my own room and bed. My drive home from the hospital was 1 1/2 hours through the streets of Manhattan to the suburbs.  Every bump and stop was an experience to say the least.  I highly recommend that the vehicle that takes you home is extremely comfortable and gives a smooth ride.  Stay away from SUVs with the rough ride.  Make sure they give you a shot for nausea before you take the drive home, it's long lasting and will help.

It is what it is

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Re: Away from home
« Reply #3 on: July 27, 2012, 11:54:46 am »
I have a 13 hour drive home from the hospital but I will stay in the area for over a week after surgery.  Is that possible for you or will you need to drive back and forth for the followup appointment post surgery?

karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

HisFireFly

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Re: Away from home
« Reply #4 on: July 27, 2012, 08:27:47 pm »
I think I'll know more after meeting with the neurosurgeon on Aug 7th.  When I met with neurotologist we talked about trans-lab.  From all that I've read here I will likely be in hospital for 5-6 days... after that, I don't know where follow-up care will be.  Guess it's a little early to try to plan...  I was thinking that staying close to where care will be made more sense than 6 hour drive each way... :-\
Learning more each day about leaning into His everlasting arms.

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Re: Away from home
« Reply #5 on: July 28, 2012, 01:11:57 am »
Sounds like a plan. Let us know as it gets closer.

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

wwarr

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Re: Away from home
« Reply #6 on: July 28, 2012, 03:25:37 pm »
I think it's a great plan!  You'll know more at your Dr.'s. appt.   Everyone's experiences are so individual and it depends on your neurosurgeon and how well your recovering.  I was advised to stay a week once I was out of the hospital for my post op appt.  However, Dr.s may differ.  Staying close isn't a bad idea when you live so far away.
 
We made the 12 hr. drive from Utah to LA, staying in Vegas along the way.  I was in the hospital for 6 days, at the Seton guest center for 4 days, then my husband drove us back home.  I was suppose to stay another week post op but I was doing so well the Dr. let me go home.  I was anxious to get home to my kids and recover in my own bed. 
The ride home is an experience.  You might feel dizzy and off balance.  Don't worry, this is normal and it takes time for your body to adjust.  If your body has already compensated for your tumor you might not have the dizziness.  If not, it's not uncommon to wake up from surgery to the room spinning.  If this happens, just close your eyes, it passes.  They will have you up and walking usually  when your out of ICU on the 2nd day or so.  This will help with dizziness and balance.    The more you walk it helps. 
May I suggest closing your eyes on the drive home with a comfortable pillow and some soft music.  The advise was given to me by a fellow AN'er and it helped.  When I did look out I had my eyes straight ahead.
You will be in my thoughts and prayers!  :) You're going to do great!!
Best wishes!
Wendy
4 mm x 8 mm 12/08
1.4 cm rt. AN middle fossa on 7/23/10
hearing and facial nerve preserved. Grateful for brilliant surgeons Dr. Friedman/ Dr. Schwartz @ HEI in LA, CA.

post op chronic headaches
”Faith in every footstep...let go and let God”

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Re: Away from home
« Reply #7 on: July 28, 2012, 05:02:39 pm »
And thank you Wendy for all the helpful information.   :)
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

wwarr

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Re: Away from home
« Reply #8 on: July 28, 2012, 07:44:22 pm »
In looking back I would have done a couple of things different.  I would have stayed that extra week at the Seton Guest Center.  I ran a little faster than I had strength!  I think I went back too soon.  Another regret, was not sticking with vestibular therapy.  I thought I could do it myself and I'm sure it would have made a difference in the way I still feel. 

So my advice is walk but dont forget to rest.  Find a good vestibular therapist if you need it and stick with it. A positive attitude is everything.  Look for the good! The little accomplishments.  You will have days when you take steps forward and a couple steps back.  It's normal.  Don't have expectations, just roll with what you are dealt with and try to look for the good in everyday.  I put on my "lipstick" every tme I got up to walk the rounds.  My daughter put a "warrior" braid in the hair they didn't shave.  My kids and I found ways to have "movie cuddle parties" even though the TV was a wild ride.  Take time for yourself and be patient.  We are all in this together and you can and will get through this.  Before you know it, you will be on the other side of surgery and recovering.
(Karen, I tried to message you but it didn't go through.  You can google my brain surgery clip, go to "Wendy Warr brain tumor vacuumed", they did a news broadcast.  It might give you an idea of HEI and your upcoming surgical procedure).
Take Care!
Wendy
4 mm x 8 mm 12/08
1.4 cm rt. AN middle fossa on 7/23/10
hearing and facial nerve preserved. Grateful for brilliant surgeons Dr. Friedman/ Dr. Schwartz @ HEI in LA, CA.

post op chronic headaches
”Faith in every footstep...let go and let God”

It is what it is

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Re: Away from home
« Reply #9 on: July 28, 2012, 07:52:47 pm »
Wendy, your postings have been very helpful as well as the clip!  Thanks thanks thanks!!!

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

MDbluz

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Re: Away from home
« Reply #10 on: July 29, 2012, 08:33:06 am »
I had a 1.8cm removed on March 7, 2012. The Surgery was on Wednesday & I returned home on Saturday. I returned to have the stitches removed 10 days after that. I didn't have to return to the surgeon until approximately 6 weeks post surgery. Initially, it was the physical pain from the incision, but I switched from Percocet to Celebrex & the pain was in control. I took 2 walks daily & by 5 or 6 weeks later I had started seeing customers. I'm a salesman & drive all day, so it took a several weeks to get myself up to a full work day. At almost 5 months since the surgery, my midday fatigue is no longer an issue, & even my evenings are beginning to return. I hope this helps. I am now addressing my single side deafness.

MD

HisFireFly

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Re: Away from home
« Reply #11 on: July 29, 2012, 03:23:11 pm »
Thank you ALL for your comments.

I don't post often due to our super slow (28k) internet connection, but I read as much as I can.

It is comforting to know that none of us walk through this alone.

Thanks again!
Learning more each day about leaning into His everlasting arms.

CHD63

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Re: Away from home
« Reply #12 on: August 01, 2012, 10:56:29 am »
Hi HisFireFly and welcome to this group of caring, supportive new friends .....

My first AN surgery was done about six hours away from where I live.  I was in the hospital 5 days and discharged to go home.  However, my sister lives about 20 minutes from the hospital where I was so my husband and I opted to stay with her for an additional 4 days before my husband drove us home.  I was VERY unstable walking and had double vision for a couple of weeks post-op ..... so I closed my eyes for much of the trip home but otherwise had no additional difficulties.

My second AN surgery was done clear across the US from where I live so my husband and I flew out and back.  We flew home on day 13 post-op and other than fatigue from some unrelated weather flight delays, I was fine.

I had no headaches either time so that was not a factor for me.  It is always best to have a couple of options available for the recovery period because it is impossible to predict anyone's post-op state.

Some doctors put staples or stitches in and require you to stay in the area until stitch removal (often about a week later).  I'd check with my doctor on that part, if I were you.

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

It is what it is

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Re: Away from home
« Reply #13 on: August 07, 2012, 05:31:07 pm »
I just re-read all these posts since I am a new postie and all of your responses have been helpful and validating.  I really love this group!!!!!!!   Thank you all!

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

Kathleen_Mc

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Re: Away from home
« Reply #14 on: August 07, 2012, 10:04:10 pm »
Something to consider.....can your local medical facilities provide care if "something bad" were to happen in the early post op days? What does the doctor doing the surgery suggest?
I went into surgery with the plan that after I was cleared to leave the hospital post -op I would go to a "rehab/ convulsant facility", after  ?9 days post-op it was determined I could just return home (my mother was going to take some time off work to look after me) and I just went to my family doc. to have the staples removed....mind you I had a local hospital were my neurologist worked if something emergent occured and I was only about 60 minutes drive from the hospital were the surgery was.
Certainly get a gravol shot or something before driving home and take some pilss with you in the car and I personally would keep taking it as directed until you get home, despite a really "smooth" riding car this is an event that will trigger nausea/vomiting if the balance nerve is disturbed.
Just my two cents
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)