Author Topic: I'm sure these are FAQs but I can't find them in a search  (Read 4019 times)

kgs123

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I'm sure these are FAQs but I can't find them in a search
« on: September 18, 2017, 08:24:26 pm »
Hi, folks.

I'm scheduled for translab in November. My preop isn't until the end of October so hoping you can help answer some questions for me. I'm clearly type A and want everything in order.

1. What do I need to buy post surgery? I have night lights, shower stool, walker (if needed), clear paths around house. Do I need anything like a wedge pillow - will I be sleeping flat or propped up?

2. At what point can I wash my hair? Do the drs make ear molds for showering and not interfering in healing?

3. Long term balance. Will I be able to ride roller coaster rides? Ride a bike? Or do I need to fit that all in with my 3 year old during a few crazy days pre surgery, complete with photos to document? :/

4. Is there any time before you're cleared for a plane ride? I'm curious about the pressure in my ear.

5. Has anyone been in a role where you had to wear an earpiece for a job but then have ssd post surgery? Is it possible to be able to wear an ear piece and filter a conversation with one good ear?

Please feel free to offer up any other information you think would be helpful. I've already reviewed my financials and left a copy with those who will be responsible if anything crazy happens. I've got a friend doing a meal train and I have caregivers for my child and I (all on a shared google doc - when I tell you type A, I'm not kidding). Please tell me what else I am forgetting to prepare! Thank you so much.

Karen
I have no signature set up but I have an 18x13x9mm and will be at Duke for surgery, Dr Francis and Dr Z

CHD63

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Re: I'm sure these are FAQs but I can't find them in a search
« Reply #1 on: September 19, 2017, 06:54:29 am »
Hi Karen .....

It sounds like you have thought through all of the essentials.   ;D  Being a Type A personality myself, I can relate.  Some things we will never know until after surgery because each of us is unique in our post-op journey.

I had two AN surgeries and the post-op recovery was quite different between the two.  Maybe obvious, but the first one was much rougher than the second.

Answers to your questions:

1.  I never needed a special pillow and slept flat (on my side) as usual.  I did find it uncomfortable to sleep on the surgery side for a couple of weeks post-op but then no different.
2.  Ask your doctor, but most will let you wash your hair as normal after the stitches/staples are out (most out in a week).
3.  This is very individual but most people resume their pre-op activities eventually.  You might feel very disoriented for quite a while after surgery and not want to ride a roller coaster or bike, but with time it should settle down.  Most doctors do not want you to do strenuous activity or lift anything heavy for several weeks post-op.
4.  I flew from LA to DC 13 days post-op with no difficulty in pressure.  I was extremely tired because of weather-related delays but a day of total rest fixed that.
5.  Interesting question that it will be good to get feedback from others.  I do know that the bone-anchored hearing devices (Ponto from Oticon Medical and BAHA from Cochlear) have remote and/or smart phone accessories that I would think could be adapted for ear piece substitution, but I do not know for sure.  Alas, if you are SSD (single side deaf), only one ear can hear so it would not be possible to have bilateral hearing again.

Best wishes and keep us up to date on how all of it goes.

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

Greece Lover

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Re: I'm sure these are FAQs but I can't find them in a search
« Reply #2 on: September 19, 2017, 12:28:41 pm »
I would essentially concur with these answers. My additions:

2. I was told I could wash my hair right away.  just no soaking or vigorous rubbing of the incision.

3. I had surgery in May and was riding my bike by mid july.  It takes awhile, be patient with it, but the balance comes back.  Never will be totally normal, but a new normal that makes life just fine.  It was about one year before I went on a roller coaster and I loved it.  I went three times in a row at the wisconsin dells and it was awesome.  My wife couldn't handle three in a row! 

For me, the biggest surprise was dealing with anxiety.  You get pumped up with a lot of drugs, and I couldn't do any of the regular things I did to make myself feel good (like bike riding, etc.).  I think I had depression and anxiety pretty bad for several weeks.  I saw a therapist a few times and that was really helpful and I've slowly gotten better in that regard.

good luck!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

kgs123

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Re: I'm sure these are FAQs but I can't find them in a search
« Reply #3 on: September 19, 2017, 07:09:02 pm »
Thank you!

james e

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Re: I'm sure these are FAQs but I can't find them in a search
« Reply #4 on: October 21, 2017, 10:49:41 am »
I slept lying down with no problem, even while still in the hospital. Buckwheat hull pillows (Amazon) are really great. They are firm, and you can move the contents around to avoid your stitches. Read some reviews on Amazon.

You will know when you can ride a bike.

Good advice is to be patient about your recovery. Life happens at its own pace. Enjoy the ride and smell the roses.

kgs123

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Re: I'm sure these are FAQs but I can't find them in a search
« Reply #5 on: November 11, 2017, 11:09:17 am »
OMG, I just washed my hair for the first time post surgery (10 days post translab). I'm sure it's not actually so clean but it's a far cry from the matted nastiness I've been laying on.

What a difference!

So...in other questions -
-I just clean the SSD ear on the outside of the canal like normal to get rid of wax?
-I know everyone is different. What ranges do people walk at this point? Dizziness is minimized. I did .3 mi this morning and plan to do that 2-3 times/day. Is that within the range of expected?

Thanks.

Greece Lover

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Re: I'm sure these are FAQs but I can't find them in a search
« Reply #6 on: November 16, 2017, 03:08:44 pm »
sounds to me like you're doing great!  I can't remember exactly how much I walked, but just do as much as you can.  everyone is different.
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.