1

Advanced Bionics Recall

Posted by Tina on 11:11 PM in , ,
Unfortunately, AB is on a voluntary recall due to TWO failures. One here in the US and one in UK. The two patients are experiencing severe pain, loud sounds and shocking sensations within 8-10 days after being activated.

At least that AB is being honest and pulling it off the shelf before anyone else gets hurt like the other two people. Not naming any companies, other brands tend to sweep their recall under the rug and hide it from others that its not easily found online.

AB's number one priority is the recipient. Which shows me that they do CARE about their recipients!!!

|
0

Support Group was a Success!

Posted by Tina on 8:04 PM in , , , , ,
It was a great turn out... but we had some visitors there that we had to kick out since I had a permit to have the space for the entire day. They weren't too happy. Sorry!

We had Meredith - who has a rare kind of dwarfism called Morquio Syndrome that is thinking of getting an CI. Her only challenge is that she had a spinal fusion which means if you have surgery and get intubated, they can't tilt her neck at all.  We were told that Dr. Niparko from JHH has some surgeries as a local... eek!  I can't imagine that!

Of course, Carrie showed up just one day post-op. My BEA manager, Beth Anne called her a brave soul. She didn't come alone :) Her mom drove her and brought her down. I think she was in good spirits and well medicated for her pain management.

I was happy with today's outcome. Let's hope that the next one will be even bigger!!! Here are some photos!



Tom with AB's Directional Signs


Me with AB Balloons!!!


Carrie (blue shirt) with Me and Meredith (purple shirt)


|
0

BEA Picnic

Posted by Tina on 4:30 AM in , , ,
It's early in the AM!  Got so much prep work to do for the BEA's Picnic Gathering!  I got balloons to fill up, directional signs to put up too!

My fiancee is helping me a lot to do this!  We got people coming from Delaware and New Jersey!  And we have a gal that just had surgery yesterday that is coming to the picnic!  I know - already? She said that she really wants to go but I told her to take it easy.  I was able to go to her surgery yesterday since I had a mapping that morning.

Wish me luck! Hopefully it doesn't rain or get too hot.  We have a gazebo, so we should be in the shade all day!!!

|
0

Got a new SUV!

Posted by Tina on 10:36 AM in , ,
Bought a new SUV yesterday!  Got an 2010 Silver Santa Fe. The main goal of this SUV I picked out was to put one kennel in there without folding the seats down.

This SUV has so many bells and whistles. There is a cord that you can plug your iPhone or iPod on and play your music in the SUV.. thats pretty darn awesome. And this sucker has BLUETOOTH! Of course, who can live without power windows and power locks? And it also has heated windshield and mirrors... thats a nice bonus.

For the phone... right now, I'm not so sure how its gonna work for me. I tried using it with my mother in the truck. It kept saying Pardon Me? Grrrr. I tried to say the numbers and it wasn't coming up the way it was supposed to. The names were also difficult.. looks like its a new thing to train myself.. not the SUV!

I'll give it a few months and we will see if I can actually use the bluetooth.


|
0

Second Mapping and SUV

Posted by Tina on 6:00 AM in , ,
Today's the second mapping, I feel that I need more information on the new ear (left ear) which is good. I'm hoping Steve can make it better so I can be able to distinguish sounds that I need to hear.

I think I'm more excited about getting my new truck later today! Ive waited so long to get this since I am constantly adding oil and antifreeze everyday to the car. I am just afraid it will simply break down on its own without a warning.

Wish me luck!

|
0

Car Died :(

Posted by Tina on 10:49 AM in , , ,
Yes, my favorite black Cavalier Z24 is going to heaven. It needs a new water pump and for all that labor, it wasn't worth fixing on a 9 year old car.  Looking into SUVs since I have two dogs and want to be able to have people in there plus the doggies.  The Cavalier didn't do it well.. the dogs took over the back seat and the front passenger seat was not usable since my 2 year old dog, Kaitu ate the seat belt on a road tip to my parents.

|
0

The Actual Activation

Today's activation went well... it was different from the first one.  I didn't get the sensation as bad like I got with the first one.  Steve programmed me with Fidelity 120 instead of 90K since he knew that I would improve faster since I am already using Fidelity 120 in my right ear.

He had an assistant in the room and was teaching her how to use the AB's sound wave software on his computers.. I believe thats she is a teaching student at Johns Hopkins. I didn't ask many questions since I was more focused on getting activated :)

I could hear the sounds this time rather than feeling the sounds but it did sound very different.  But since this is my 'bad' ear, it may not jump as high with my 'good' ear. We will see next week and the upcoming mappings!

|
0

Activation!

Posted by Tina on 9:37 AM in ,
It's the big day!!! Im not nervous like I was with my first activation.  Just going solo this time. No family, fiancee, etc. Since I already know what to expect and Im also bring my flip video camera for my activation to compare it with my first one. Which i had a lot of sensation on my forehead which causes me to have migraines.  I still get them only when there is a very loud noise.

|
1

Activation - June 25th

Posted by Tina on 9:40 AM in ,
Activation day is about 24 more days away.  I am actually nervous!  I know I've been thru it before.. I guess I'm just silly! I am curious how much it will help me more by having two implants rather than one. I have heard so many stories on how people do so much better with two.

|
0

Memorial Day Weekend!

Posted by Tina on 10:17 PM in , ,
Yeap! I felt that I needed a vacation that didn't require too much stress. I knew I couldn't do anything strenuous since I'm only two weeks post-op. We went off to Deep Creek Lake. It was so pretty!  The first day we got there, we went on a boat ride on the Deep Creek Lake.. they say its the first MAN-MADE lake. I thought it was pretty cool.

I had my best friend Brookeann braid my hair everyday since I couldn't do much with my hair since a lot of the hair was shaved and wanted to hide that area and the scar. I felt like I looked like Frankenstein.

I noticed that my car was overheating a lot on the way up there :( It was leaking antifreeze, not sure why.

I took my 2 year old dog, Kaitu with us. He had a blast playing with two other dogs that were at the rental townhouse and got to play in a huge back yard.  It was a nice trip for post surgery. We normally do roller coasters and amusement parks for Memorial Day weekend but I knew I couldn't do it this year.

Here are a few photos :)

Me & Tom


My 2 year old, Kaitu jumping in the air to get the frisbee!

|
0

BEA Support Group - Great Turnout!

Posted by Tina on 5:00 PM in , , , ,
It was a great turn out. I think I shocked everyone that I was 4 days post-op.  I told them that I was bilateral as of 4 days ago... not activated but surgically wise.  Most of them were amazed that I was feeling good in a short time. (The trick was - - - the best pain meds you can ask for!)

My balance is back on track as well, I explained to the group that with my first CI surgery, my balance was a bit out of whack. And this bilateral surgery could either make it or break it. Since the surgery, I've noticed a huge improvement in my balance, its better than before.

Hopefully the next support group at the end of the summer will be even bigger!!!

|
0

Baltimore BEA Chapter Support Group

Posted by Tina on 8:56 AM in , , ,
Yes! There is a support group held at the Elkridge Public Library... I know I just had surgery 4 days ago but I feel great!!!  I have friends that will help me with all the lifting (since I can't lift anything more than 5 pounds for a few weeks due to the surgery).

Let's hope for a great turn out. I have Beth Anne and a clinical specialist coming in today to help anyone with any questions they need answered!

|
0

Surgery Day - Part Two

Posted by Tina on 1:29 PM in , , ,
Surgery was successful!  No problems with my sugar!  The OR nurse LOVED my CGM.  Well worth it!

I was up and going home before 1155am!  Got home at 1230pm! No complications, less bleeding than the other surgery which was less bleeding than normal.  Thats pretty good!  Dr. Limb liked how the procedure went and was pleased with the results. He's excited for me for my activation!

I woke up with NO pain at all!  I was such a happy camper! Will do a posting on comparison from both surgeries. And was able to walk to my second phase of recovery!  From waking up and getting over there was about 15-20 minutes apart.  When I woke up, i immediately saw the nurse and asked for a drink and crackers.  I was smiling away cuz I was pretty numb  this time.  Really nice nurse.

One bad thing... I got stuck 3 TIMES for a IV!!!!!  This pre-op nurse must have been new and was not experienced in doing IVs.  But I asked for my old pre-op nurse, Victoria.  She didn't come in til later but she was able to get in a nice line for me and was happy to see her again.

Had the same anesthesiologist!  It was a small world!  She was glad to see me again!  She was like number two already?  I was like up, lets get the show on the road!

Didn't even say bye to my parents.. only my fiancee. I was put under about 10 seconds. This was so much smoother than the last time.  Had a good surgical experience.

|
0

Surgery Day!

Posted by Tina on 4:25 AM in , , ,
Yup, today is my surgery day!  Whoot!

I'm so pysched!

Sugars are running normal and will have my CGM and Pump during surgery!

Wish me luck!

|
0

AB Headquarters Again!

Posted by Tina on 10:29 PM in , ,
I was invited to go back to AB's HQ for Chapter Leader Training!  It was a great training session, got great ideas for my upcoming support groups! I can't wait to try out new ideas.

Finally got to meet a guy I've heard so much about in the AB world, Sam. He made me feel right at home in Valencia. And gave me some great laughs!

I was the ONLY person there with one implant.  Everyone was bilateral but I told em all that I was going to be bilateral in two weeks... can you believe it.. two more weeks to go!

I met a fellow named Stu, he does the AB BEA for the UK side. I was able to understand his british accent since I grew up with a few UK friends. And he has one implant himself and I asked him why not two? He said that UK doesn't approve bilateral implants for adults like the US does. Thats a bummer.

The worst part, I had to leave on my birthday! Needed to fly back home for an information booth in Virginia the very next day. I was hoping to get special treatment from the airline since it was my birthday.... no one noticed :(

Here are some photos from the visit!


Tina & Stu


Paul, me, Sam and Wayne!

|
0

Bilateral Surgery

Posted by Tina on 9:08 AM in , ,
I got my bilateral surgery! Its on May 18th! I am psyched! Ill finally be 'stereo'! Dr. Limb will be doing my surgery again. He did a great job with the first one and has awesome bedside manners.

|
1

Audiogram Comparison

Posted by Tina on 9:28 PM in , , ,
I know its been forever since my last post but will update my blog eventually.

I did a comparison of my audiograms so far to this point and thought it would be great to share with everyone.





|

Copyright © 2012 You gotta b'lieve Hon, or not! All rights reserved.