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Mary Beth

April 2018 surgeries and activations

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I'm home and comfortable!  And I have a hubcap.

me post surgery.jpg

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Lol, @Mary FeatherstonI see that you have not lost your sense of humour. Glad everything went well.

How long do you have to wear the hubcap for? 

 

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Welcome to the club @Mary Featherston!  Which electrode array do you have?

 

Rest easy.  

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@Mary Beth, I totally forgot to ask about the array.  I'll be in for a follow up and will find out then, I'm interested to know.  @Jewel, I'm allowed to take it off tomorrow.  It's not uncomfortable when I'm sitting up but when I lie down to sleep (and I slept for three hours after I got home, and I almost never sleep during the day) I have to keep my head straight and not put pressure on the right side.  As the pain goes away I'm sure that will too.  The nurse said the worst of it would be over with this weekend.

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@Jackie Erickson, how are you doing?

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Getting around a little better, very sore and bruised. 

How did your surgery go?

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Really well.  I'm still in a bit of pain and am kind of woozy but it's much, much better than Friday or yesterday.

The surgical team was great, not just in keeping me as comfortable as possible before, during and after surgery, but in telling me what to expect as I heal.

I'm really impressed with them.

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@Jackie Erickson

Are you wearing an ear cup too? 

Take it easy. 

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I hope you feel better soon @Jackie Erickson

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Wow, I am even more impressed with the surgical team now.  I just had a shower and the last little bandage that was stuck behind my ear came off.  The incision and the sutures are clean and healing nicely.  All that worrying I did, and these guys just made it look easy.  Anyone in Minnesota, go to the University of Minnesota clinic.  The people there are awesome.

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@Mary Featherston

That's great! So you have no pain or any side effects from the surgery? 

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@Jewel - there's still tenderness over the implant and behind my ear, but most of the pain has tapered off.  If I touch where the implant is, I can cause some pain, so I don't do that.  :-)   The pain when I was awakened after the surgery was pretty intense but once they topped up the pain meds it became manageable and it's getting better and better as the time passes.

I had a 100 F temperature for about 24 hours after the surgery but it dropped back to normal yesterday afternoon and has stayed there.  I do feel a little lightheaded yet - not really a serious equilibrium issue, more like just being tired and a little wavery if that makes sense.  All in all the healing process has been much faster than I expected.

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@Mary Featherston

Please take things easy. Some people said they had to sleep in chairs for the first few nights. Did you have to do that? Just curious as to what I should expect. 

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@Jewel - not to worry, I am taking it very easy.   Mostly I've been in a recliner.  Friday night I put extra pillows on the bed to form a sort of ramp - just to keep my head a little bit elevated.  I started that way last night too, but by morning I didn't want it any more and just used my normal pillow and was comfortable.  I did notice that the tinnitus increased a bit over the weekend and was pretty loud last night, but @Kara of Canada had mentioned that so I know it's normal and am just doing my best to ignore it.

Your experience may be different, of course, but from what I can see, the surgical process is much less traumatic than it used to be.  I know a woman who got her CI fifteen years ago and they kept her in the hospital for two days.  I'm glad I was able to come home, I'm more comfortable here and sleep better, and my husband is a better cook than most hospital kitchens! 

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Sounds like you are doing well  Mary and glad to hear it. I still have the tinnitus it’s comes and goes. Definitely not bad. As for sleeping up right I was told not to sleep on the implanted side for two weeks so I just started sleeping on my back again. I was so frustrated with staying comfortable so I gave it up. I was propped up with pillows before. Don’t own a recliner. Staples out and feeling so much better! Three weeks to activation! So excited! 

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@Kara of Canada - that's been one of the things that I had to adjust to, because I normally sleep on my right side.  I have found that I can sleep on my back or my left side and am just getting used to it.  I'll be interested to hear how your activation went!  I have been wondering if the second one is an easier transition since you've already retrained your brain to hear this way with the first CI.  @Mary Beth, what was your experience with your second activation. 

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@Mary Featherston

Sounds like your recovery is moving right along.

 

@Jewel

Even if your CI team does not mention sleeping with your head elevated for a few nights, it may still be a good idea.  It is done to minimize swelling.  Just a thought.

 

@Kara of Canada

Glad your recovery is much easier this time.

 

My second activation was completely different than my first.  Even though my second side had always been processing some sound (unlike my first side), it came on board slower for speech but faster for music.  Smile.  It took its own unique journey but when it caught onto speech, it really took off and in no time was scoring the same as my first side.  I think of it like children.  Smile.  No two are the same.  I am fortunate that my sides are equal and very balanced.  My CI audiologist is amazing and I am very thankful for her expertise and her patience.

I am looking forward to reading all about your own journeys.

 

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@Mary Beth - very cool!  I've been blogging my CI journey for my friends.  It's also served to help me clarify my own thoughts. 

It's such a big step, it has felt right to recognize it and keep a record of the experience.

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@Mary Featherston

Many people have online blogs of their CI journeys....most go from deciding on a CI to about one year after being activated.  Some blogs are private and others are public.  Maybe you have discovered some online too.

 

I keep a private journal off-line. I have entries from appts leading up to deciding on a CI and am still journaling from time to time (3 years after activation).  This journal is just for me.  I like looking back and it was very helpful when seeing how my second CI was progressing compared to my first.  I encourage everyone to keep a journal of their experience.

 

Med-El asked me to write two guest articles about my experience.  The first guest article was after receiving my first CI and having it for several months.  The second guest article was prior to my second CI and followed it for one month post activation or so.  Those two guest articles are online and public.  It was helpful to read others’ experiences when I was beginning this journey so I tried to pay it forward.

 

My CI journey has been amazing and life changing.  I am glad I have a written record of the journey.  I think you will be happy you do too.  The fun is about to begin.  Buckle up.  It’s a wild and crazy ride.

 

 

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@Mary Beth - I've been keeping a journal for about 18 years now, with varying levels of activity over the years.  I am keeping that up to date with my CI journey as well, the blog is because I have friends and relatives who are interested.  My aunt in particular because she almost got a CI a few years ago - she was approved by Mayo but Medicare said no.  She is still hoping to be approved at some point.  I also have a cousin who is struggling with his insurance company to get a BAHA.

It saddens me that they can't get the devices they need.

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It is sad when people can not obtain what they need in order to hear well.  

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On 4/13/2018 at 7:16 PM, Mary Featherston said:

@Mary Beth, I totally forgot to ask about the array.  I'll be in for a follow up and will find out then, I'm interested to know.  @Jewel, I'm allowed to take it off tomorrow.  It's not uncomfortable when I'm sitting up but when I lie down to sleep (and I slept for three hours after I got home, and I almost never sleep during the day) I have to keep my head straight and not put pressure on the right side.  As the pain goes away I'm sure that will too.  The nurse said the worst of it would be over with this weekend.

All very true. The worst is over soon. When is activation?

 

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This week we have at least two members getting activated!

@Dave on Thursday (April 19)

 

@Jdashiell

On Friday April 20

 

Wishing you both the best!

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@Jdashiell - Joe, I don't have an activation date yet, that will be set when I have a follow-up appointment.  I'm kind of hoping for three weeks from the day of my surgery, if that's possible based on my hearing - because three weeks to the day after my surgery is May 4 - my birthday!  Wouldn't that be the best gift?

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