Queens On A Roll

Episode 8: The Dreaded Surgeries

June 07, 2022 Latavia & Various Guests Season 1 Episode 8
Queens On A Roll
Episode 8: The Dreaded Surgeries
Show Notes Transcript

In this episode my aunt and I discuss the different types of surgeries people with cerebral palsy may have to have. I also share my experiences, so come roll with us!!!!

Support the show

(Instrumental Music)

(00:03.0 - 00:07.6)

(Instrumental Music & Singing) Queensss On A Roll

(00:07.6 - 00:12.7)

(Instrumental Music & Singing) Yeahh Heyyy Queens On A Roll

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(Instrumental Music & Singing) Ooooo who Queens On A Roll

(00:17.5 - 00:23.6)

(Instrumental Music & Singing) Powerful Queens On A Roll

(00:23.6 - 00:28.3)

(Instrumental Music & Singing) Queensssss

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(Instrumental Music & Singing) Oooo who Queensss

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(Instrumental Music, Singing & Bell Chiming) Powerful Queens

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Hey, everyone, and welcome back to

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Queens On A Roll podcast.

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This is Latavia here.

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And guess who I brought back with me?

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My lovely Aunt Valerie. Hi, everyone.

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How are you doing today?

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I'm doing great, i'm doing great Auntie. How you doing?

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I'm hanging in there, girl. Hanging in there.

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That's great.

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So before we get into today's topic, which

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is surgeries, everybody wanted to know something, Auntie.

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So let's roll.

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Let's roll, girl.

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Let's roll.

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(Instrumental Music)

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Hey, Auntie.

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So everyone wants to know, how did we come

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up with the Queens On A Roll song?

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Well, it's still baffling me. Yeah, I know.

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It's baffling to me, too.

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It kind of happened accidentally, y'all.

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So I came to my aunt and I said to my aunt,

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I wanna start this podcast called Queens On A Roll.

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And here's what it's about. You know

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It's about helping the ably different community and

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educating people about the ably different community.

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And she was like, I love that idea.

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I said, thank you, but I need a theme song.

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Can you help me out?

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So she said, okay, I'm coming over to your house,

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and we kind of just played around with it.

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But my aunt has a background in music.

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So tell them a little bit

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about your background, auntie Yes.

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I used to sing in a band called Sounds of Ebony.

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I was the lead singer.

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And so we were selected to

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be on Jerry Lewis, the Comedian.

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He used to do a muscular dystrophy, telethon

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And our band was selected for that telethon

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And I've always sang professionally.

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I've also sang in gospel groups,

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and I've done many different things.

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So this is where my background comes

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from because I've always been either a

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lead singer or singing in a background. Yeah.

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So I always knew that Auntie had those singing

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credentials, but it really just happened by accident.

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She came over and we just

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played around with some words.

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I think my mom had some words.

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And my aunt was like, no scrap that.

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And I played the beat for

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her, and she just started singing. Right, Auntie?

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Right Latavia

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We were just playing around, and I began to put

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words to it, and I started saying things like Queens

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on a roll

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Woooohooo queens

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on a roll, powerful queens

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And when I looked, everybody was up dancing,

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singing the song, and it just caught on.

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So I'm just grateful that you

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guys enjoyed it out there.

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And I thank you for your support.

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Yes, most definitely.

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When I tell you everybody loves that song, Auntie.

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Everybody loves the song.

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And they said to me, you didn't address how you

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guys came up with the song in the last episode.

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So I said, okay, I have to

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give my listeners what they want.

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And I have to ask you, how

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did we come up with this song?

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And stay tuned, guys, cuz next season we're gonna

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have a full Queens On A Roll song.

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We're working on it. We're working on it

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(Instrumental Music)

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Now we're on to

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surgeries for cerebral palsy, the dreaded surgeries.

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Oh, yes, the dreaded surgeries.

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Latavia, I remember how you used... I believe you took

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16 to 18 surgeries, and it was just amazing.

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I just wondered how you went through them all.

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So I think I've had about 18

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different surgeries, and I started at two.

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There are six different types of surgeries.

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So I'm just going to explain what they

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are and go into detail with them, and

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then I'm going to tell you my experience.

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(Delayed Beat Instrumental)

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So there's muscle lengthening, which is where you

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lengthen the muscle, because again, we're tight.

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So you have to lengthen

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the muscle throughout our lifetime.

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It usually happens in the hands of the fingers.

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I haven't had this surgery because unfortunately,

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my arms are contracted, so I couldn't

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really do much surgeries with my arms.

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I could do one surgery where they release it to see,

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but I was scared, and my mom was scared to do

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it over time because like I said before, sometimes underneath that

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tone, you got a very strong muscle or you got a

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very weak muscle, and they're not able to determine that.

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So sometimes when you take the surgery, your arms could

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flop out and you can no longer bring them in.

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So I didn't want to run the risk of that happening.

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So I just said, you know leave my arms alone.

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But if your child needs it, it

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is a good surgery to get.

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And all of these surgeries are good to get guys

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when your child is young, because as an adult, if

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your child needs to get these surgeries, it's so super

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hard to recover because the body's older now.

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It takes more time and it's

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more traumatizing to the body.

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I remember talking to one of my friends who actually

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had to do it now as she's older, and she

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was like, I would recommend any parent to do it

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when their kid is small because it just makes recovery

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that much easier and it's easier to deal with.

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So again, if you feel like your

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child is going to need these surgeries,

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do your research, listen to the doctor.

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But again, do your research and do what you

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feel is best for your child at that time.

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So if you feel like he or she is going

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to need it, by all means do it, because all

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these surgeries are helpful at different points in their lives.

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(Stair climbing sound)

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The next surgery has become a little bit

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more famous now because they don't really like

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to do tendon lengthening surgeries anymore.

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What they do now is

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tendon transfers, and tendon transfers.

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They usually just cut the tendon and

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do a replacement of the tendon

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Ohhhhhh It seems like my aunt, she's

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over here making an oooooo face. Yes.

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Because it sounds so scary, I mean really, I mean as a

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parent who has a child with cerebral palsy.

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Yeah, it sounds very scary, but you can enlighten us.

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Yeah, it is scary.

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But again, all of these surgeries are going

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to help at one point or another.

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So the tendon transfer surgery is where they usually

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just cut the tendon and then they replace it.

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The goal of the surgery is to keep your body

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in proper alignment and it helps reduce any pain or

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any problems that they may have with walking.

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And it improves like your flexibility.

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If you do it in the hands,

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it improves the flexibility in the wrist.

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I feel like this one is becoming a little bit

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more popular, especially for the adult population, because now that

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we're older, they don't really like to do the tendon

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releases, because what they have found is that when you

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do tendon release surgery or tendon lengthening, where they just

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go in and they cut the tendon and then they

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lengthen it, it knocks your pelvis out of alignment, which

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then leads to scoliosis, which is what happened to me

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over the years.

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I've had tendon lengthening surgeries, so they

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cut the tendon and they lengthen it.

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That's to help with growth because our muscles and

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tendons are so tight, it can stunt our growth.

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So they have to go in at certain times, which

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they like to do it now between the ages of

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six and ten and lengthen the tendons so that they

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could grow with us as we grow.

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It won't stunt the growth and we won't have

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contractures because that can lead to contractures, which just

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means now your leg will be fixed in a

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position and you can't move it.

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And it's painful.

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I actually have contractures in my

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arms, but they're not painful.

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It just means that I can't really stretch my arm

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out as far as I need it to go sometimes.

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Wow, Latavia

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Who would ever think, you know this is really

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enlightening to parents and it's really something

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that parents need to look into.

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Do your homework, parents, before you just

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rush into things you know and do your research. Yeah, definitely.

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My mom was a big researcher and listened

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to everything, but I kind of have now

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taken up the mantle and I research everything.

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So, yeah, definitely do your research.

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And again, definitely go with your gut.

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Take all the information, take the information from

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your doctor, take the information from yourself, then

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take the information from the research that's out

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there and make an informed decision.

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(Stair Climbing sound)

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They also have tenotomy or myotomy

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Which tenotomy

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It just describes the cutting of the tendon. Right.

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The myotomy is also cutting of the muscles.

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Think Myo muscle, tenotomy, tendon

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So it all involves cutting the muscle or the

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tendon and that's to improve increased control of your

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upper limbs and to enhance the ability to grasp

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objects with your hands and your feet.

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I never had any of those because

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I barely could move my toes.

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Literally, when I wiggle my toes, I'm literally

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only wiggling my big toe a little bit.

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It never really impacted my mobility, so I

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didn't feel and my mom didn't feel at

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the time that it was necessary for me.

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So I haven't had to do any of that.

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I can wiggle my fingers somewhat.

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And like I said, my upper body is way more

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stronger now than it was years ago, so I didn't

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need to do any of that for my upper.

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It's mainly my lower now.

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But again, if you feel like your child

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needs that, please, by all means, get them

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the surgery after you make an informed decision.

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And then there's osteotomy.

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I've had a few of those, and let

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me tell you, they are not easy.

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So for people with spastic CP, your bones

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tend to come out of the socket.

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Your hip bones tend to come out of the

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socket, and your hip bone tends to come out

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of the socket guys, because for able body people, as

(11:12.5 - 11:15.3)

you guys walk, the socket begins to hollow out.

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But for people with CP, the hip bone is

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not hollowed out because we don't constantly walk.

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You have to constantly walk for the hip

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socket to be hollowed out, so we don't

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constantly walk, so that doesn't happen.

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So the hip bone just easily slips out.

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Wow, Latavia that must have been painful.

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Oh, don't worry.

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It wasn't painful at all because

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you don't even feel it.

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A lot of the time, I didn't even know

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my hip bone came out of the socket. Oh, my God.

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How could you say you didn't feel

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your bone come out of the socket?

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That is very painful.

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That's because the tight tendons and muscles keep the bone

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close to the socket, so you never really feel it.

(11:54.2 - 11:57.1)

When I was younger, my mom would actually tell me

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that the hip bone came out of the socket because

(11:59.2 - 12:02.2)

she would say, you could feel the bone, and then

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your leg kind of feels all Loosey Goosey.

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So she was like, your hip bone came out again.

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And I was like, oh, boy, that means another surgery.

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And she was right.

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All of the time that my hip bone came out

(12:13.9 - 12:16.1)

of the socket, she was exactly right.

(12:16.2 - 12:17.6)

It was out, and I needed to

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go back in and have surgery.

(12:19.8 - 12:22.4)

Oh, my God, that's really something.

(12:22.5 - 12:24.4)

Yea it's alot

(12:24.7 - 12:48.2)

(Instrumental Music)

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(It's Fun Fact Time)

(12:51.9 - 12:54.9)

So the fun fact for today is before they shaved

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my bone down, my hip bone to do the rotational

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osteotomy, the doctor said from my bones, it looks like

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I was supposed to be 6ft tall.

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Can you believe it?

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6ft tall.

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I do have some tall people in my

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family, so that's probably where it comes from.

(13:11.4 - 13:13.3)

But I am kind of glad that I'm not

(13:13.4 - 13:16.6)

6ft tall because guys usually be like, I don't

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want the female to be taller than me.

(13:18.7 - 13:22.4)

So I am now 5'3, because when they do

(13:22.4 - 13:25.4)

it before a growth spurt, it stunts your growth.

(13:25.5 - 13:26.9)

So it stunted my growth.

(13:26.9 - 13:28.7)

So now I'm only 5ft three

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inches, which is okay with me.

(13:30.7 - 13:33.8)

Thank goodness, Latavia that you're not 6ft.

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I know, and you are right.

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Guys don't like their girls taller than them.

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I know, I know, I wanted to just go back to the tenotomy

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Myotomy because I noticed that you

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said they cut the tendon

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And I know that I'm just talking now from my experience,

(13:56.8 - 14:00.5)

for people that don't have CP, but they might have an

(14:00.5 - 14:04.1)

Achilles heel tear, which is a tear in your tendon.

(14:04.1 - 14:06.1)

I know that, that is very painful.

(14:06.2 - 14:09.8)

So I wanted to know if this procedure was very painful.

(14:09.9 - 14:12.9)

So for people with CP, and again, I'm speaking from

(14:12.9 - 14:16.5)

my experience, guys, for me, the surgery wasn't painful.

(14:16.6 - 14:20.0)

The parts of the surgery that is painful is after

(14:20.0 - 14:22.8)

it's all done and over with, you have spasms.

(14:22.9 - 14:26.7)

And that's because remember now your tendons and your

(14:26.7 - 14:30.1)

muscles are used to being in one position, right?

(14:30.2 - 14:31.4)

They're used to being tight.

(14:31.5 - 14:33.7)

So now you're relaxing them and you're

(14:33.7 - 14:35.8)

making them loose, and they want to

(14:35.8 - 14:37.6)

go back to where they originally were.

(14:37.7 - 14:39.5)

So you'll feel like the muscle jump.

(14:39.6 - 14:40.6)

And it's painful.

(14:40.7 - 14:44.4)

It is extremely painful, and it hurts a lot.

(14:44.4 - 14:48.1)

So that, for me, was the painful part of the surgery.

(14:48.1 - 14:50.7)

And then they get you up the next day.

(14:50.8 - 14:53.2)

Because for people with CP, if

(14:53.2 - 14:54.7)

you lay around, you get tighter.

(14:54.8 - 14:57.3)

So they didn't want all that hard work they did

(14:57.3 - 14:59.5)

on surgery to make you loose and make you be

(14:59.5 - 15:01.4)

able to stand up straight to be in vain.

(15:01.5 - 15:02.9)

So you have to get up the next day.

(15:02.9 - 15:07.0)

And when I tell you walking is difficult after

(15:07.1 - 15:11.6)

surgery because you don't have any strength, your muscles

(15:11.6 - 15:14.9)

are loose, you can't control anything, and you just

(15:14.9 - 15:16.8)

basically just flop to the floor.

(15:16.9 - 15:18.9)

I could barely take any steps.

(15:18.9 - 15:20.9)

It was painful. It hurt.

(15:21.0 - 15:23.2)

So that for me, was the painful part of

(15:23.2 - 15:25.9)

the surgery, not the actual cutting, because the cutting

(15:26.0 - 15:28.4)

actually makes you loose and it feels good and

(15:28.4 - 15:30.4)

you can stand up straight and you can move.

(15:30.5 - 15:32.0)

It was just the spasms.

(15:32.1 - 15:34.6)

And not being able to move for the

(15:34.6 - 15:36.3)

first couple of days that bothered me.

(15:36.3 - 15:39.6)

Surgery for me was always like a setback because I would

(15:39.7 - 15:42.4)

get to a point where I'd be very mobile and able

(15:42.5 - 15:45.9)

to move around, and then Bam, another surgery came in, and

(15:46.0 - 15:48.5)

I have to do another surgery because the hip socket came

(15:48.5 - 15:50.7)

out or I had another growth spurt.

(15:50.7 - 15:52.4)

So now I need to lengthen the tendon

(15:52.4 - 15:53.9)

to keep up with the growth spurt.

(15:54.0 - 15:56.5)

So because of that, I always felt like

(15:56.5 - 15:58.3)

surgery sent me back a bit because it's

(15:58.3 - 16:00.5)

always like starting over from square one.

(16:00.5 - 16:01.4)

But it's okay.

(16:01.5 - 16:03.8)

It's life you know its stuff that we have to go through.

(16:03.9 - 16:06.5)

And I wouldn't be here today without other struggles.

(16:06.6 - 16:08.9)

So you have to appreciate the struggles as well.

(16:09.0 - 16:10.6)

Thank you Latavia. You're welcome.

(16:10.7 - 16:11.9)

You're so welcome.

(16:11.9 - 16:36.5)

(Instrumental Music)

(16:36.5 - 16:39.1)

(Story Time Sound Effect)

(16:39.1 - 16:42.6)

So I can't remember what surgery it was, it either was

(16:42.7 - 16:45.9)

hamstring surgery or putting my hip back into place

(16:46.0 - 16:48.6)

But you guys are not going to believe this.

(16:48.7 - 16:51.0)

I woke up during surgery.

(16:51.1 - 16:52.4)

Yes, you heard me right.

(16:52.4 - 16:54.1)

I woke up during surgery.

(16:54.2 - 16:56.8)

So, yes, they gave me anesthesia to put me to sleep.

(16:56.9 - 16:59.3)

And back then, they called it the wet puppy.

(16:59.4 - 17:01.8)

And the wet puppy was just a mask with

(17:01.9 - 17:03.9)

anesthesia in it and to put you to sleep.

(17:04.0 - 17:05.3)

But that was like a cute name.

(17:05.3 - 17:07.9)

They tried to give it for teenagers and little kids.

(17:08.0 - 17:09.0)

I hated that thing.

(17:09.0 - 17:11.9)

So I woke up during the surgery, and I remember

(17:12.0 - 17:14.1)

saying, owww, what are you doing to my leg?

(17:14.2 - 17:16.4)

Stop messing with my leg. That hurts.

(17:16.4 - 17:18.0)

And my doctor came over at the

(17:18.1 - 17:19.2)

time, and he was like, okay.

(17:19.3 - 17:21.0)

And he rubbed my head and he

(17:21.0 - 17:22.7)

said, everything is going to be okay. Okay.

(17:23.1 - 17:25.0)

And they put the wet puppy back

(17:25.1 - 17:26.6)

on, and I went off to sleep.

(17:26.7 - 17:29.6)

But the crazy part about it was I remembered it

(17:29.7 - 17:32.0)

when I got out of surgery because I remember telling

(17:32.0 - 17:35.1)

my mom, mom, I woke up during the surgery.

(17:35.1 - 17:36.6)

So mom was like, yeah, I know.

(17:36.7 - 17:39.0)

They told me that you woke up during the surgery.

(17:39.0 - 17:41.8)

It was a really crazy experience.

(17:41.8 - 18:07.0)

(Instrumental Music)

(18:07.0 - 18:10.2)

So the last two types of surgery is for

(18:10.3 - 18:14.5)

people with severe spasticity, and that's arthrodesis, which is

(18:14.5 - 18:16.9)

just a fusing of the bones together so that

(18:16.9 - 18:18.6)

it makes it easier for you to walk.

(18:18.6 - 18:22.0)

And then there's selective dorsal rhizotomy, which

(18:22.0 - 18:23.9)

it involves getting to the root of

(18:23.9 - 18:26.2)

the spasticity and cutting the nerves in

(18:26.2 - 18:29.3)

the spinal cord responsible for muscle stiffness.

(18:29.4 - 18:31.4)

I thank God that I never had to

(18:31.4 - 18:33.6)

do any of those surgeries because they sound

(18:33.7 - 18:36.5)

Super, super invasive and super dangerous.

(18:36.6 - 18:40.1)

But again, if you feel like you're child needs them parents, by

(18:40.1 - 18:43.0)

all means do it and make an informed decision.

(18:43.1 - 18:44.5)

But I thank God that I didn't

(18:44.5 - 18:45.9)

have to do any of those things.

(18:46.0 - 18:48.0)

Now, all of the information in this

(18:48.1 - 18:50.9)

episode and in the last episode, the

(18:50.9 - 18:53.2)

definitions of the surgery, what it entails

(18:53.3 - 18:56.0)

was courtesy of the United Cerebral Palsy Foundation,

(18:56.1 - 19:00.0)

Cerebralpalsy.org and the Children's Hospital of Philadelphia.

(19:00.1 - 19:03.1)

And please, guys, please remember that whenever I

(19:03.1 - 19:07.1)

give you any information and also experiences it's,

(19:07.1 - 19:09.9)

my own personal experiences, how I feel about

(19:10.0 - 19:12.0)

it, my own personal thoughts.

(19:12.1 - 19:14.6)

So by all means, I know that the way

(19:14.7 - 19:17.4)

I explain the surgeries may not be in the

(19:17.5 - 19:20.1)

most technical terms, but that is the way they

(19:20.2 - 19:22.3)

explained it to me growing up as a child.

(19:22.4 - 19:23.9)

And I tried to provide it

(19:23.9 - 19:25.7)

in the most simplest way possible.

(19:25.8 - 19:27.9)

So if you feel like you need a more in

(19:28.0 - 19:31.0)

depth look at all these surgeries, by all means, please

(19:31.0 - 19:34.0)

make an informed decision and search it up online.

(19:34.1 - 19:36.3)

All the information is there, and you can

(19:36.3 - 19:38.0)

go to the websites that I went to.

(19:38.1 - 19:40.0)

Those are great resources.

(19:40.0 - 20:14.0)

(Instrumental Music)

(20:14.0 - 20:18.2)

And now it's time for the quote of the episode.

(20:18.2 - 20:20.3)

And Auntie, would you please do the honors

(20:20.3 - 20:22.2)

of reading the quote of the episode?

(20:22.2 - 20:26.2)

The quote of the episode is by Bishop T.D. Jakes

(20:26.4 - 20:30.0)

Every setback is a setup for a comeback.

(20:30.1 - 20:31.5)

Watch for the comeback.

(20:31.6 - 20:33.0)

Yes, I love this quote.

(20:33.1 - 20:36.7)

And this quote resonated with this episode, especially because

(20:36.8 - 20:39.6)

like I said before, I felt that every surgery

(20:39.7 - 20:41.6)

I ever had was a setback, right?

(20:41.7 - 20:44.6)

But after the surgery was over I realized it

(20:44.6 - 20:46.4)

was a comeback because I was able to be

(20:46.4 - 20:49.1)

more independent, I was able to move more.

(20:49.2 - 20:50.4)

I have more mobility.

(20:50.5 - 20:51.8)

I could transfer now.

(20:51.9 - 20:55.1)

So yes, I did feel like it was a setback at

(20:55.1 - 20:58.7)

the time, but looking back on it, it was for a

(20:58.7 - 21:01.8)

greater comeback and I definitely did have a greater comeback.

(21:01.8 - 21:03.5)

I mean, look at me now, right?

(21:03.5 - 21:06.3)

So they were very helpful in my journey

(21:06.4 - 21:08.2)

to get to where I am today.

(21:08.3 - 21:33.5)

(Instrumental Music)

(21:33.5 - 21:36.4)

So that's all we have for you today, folks.

(21:36.6 - 21:38.8)

Thank you for joining me, Auntie.

(21:38.9 - 21:40.6)

You're welcome, Niecy

(21:40.8 - 21:43.0)

Thank you guys out there for sharing.

(21:43.1 - 21:46.2)

Please continue to subscribe you subscribe by hitting

(21:46.2 - 21:48.1)

the little plus button in the corner.

(21:48.2 - 21:51.1)

Let us know what you want to hear and if anybody

(21:51.2 - 21:53.8)

else out there who is ably different has a

(21:53.8 - 22:00.4)

story to share, please share it with us at queensonaroll.podcast@gmail.com.

(22:00.6 - 22:04.9)

That again, is queensonaroll.podcast@gmail.com.

(22:05.0 - 22:07.3)

I really, really appreciate that you

(22:07.3 - 22:09.1)

guys are listening every week.

(22:09.2 - 22:10.2)

Thank you so much.

(22:10.3 - 22:11.8)

Please continue to share and run

(22:11.9 - 22:14.4)

it up and we're rolling out.

(22:14.5 - 22:20.0)

Yes, we're rolling out because we are Queens On A Roll

(22:20.1 - 22:21.3)

See you guys next week.

(22:21.5 - 22:50.5)

(Instrumental Music)

(22:50.9 - 22:51.6)

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