A Rare Thoracic Herniated Disc And The Long Fight For A Diagnosis

WEBVTT
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You're not crazy.
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You're not crazy.
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Your pain is real.
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All your symptoms are real.
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Welcome to Bed Back and Beyond, sharing positive stories of recovery from serious back or neck injury.
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Your host is CK, a fellow champion who draws on her own experience with permeated disc surgery.
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Join her as she talks with others who have overcome the physical and emotional trauma of a painful injury.
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And discover for yourself how you can find hope and encouragement in recovery.
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Welcome to this episode of Bed Back and Beyond.
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I am super excited for this episode.
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I've been asked a few times now to find someone with a thoracic herniated disc story because it's not as common as the lumbar disc.
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And I came across Sophia on Reddit.
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So not only does she have an amazing story, she has a nonprofit organization, and I have a feeling she has a lot to teach us about advocating for ourselves.
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Sophia, hi, hi.
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Thank you so much for joining me.
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No, thank you for inviting me.
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Yes.
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So before we talk about your injury, do you mind just telling us about yourself?
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About myself.
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Well, you notice I have a thick accent.
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I grew up in South America.
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I come from Chile.
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I live in Brooklyn.
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I have been here for eight years.
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I am an artist.
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Um, before my accident, I used to have a normal life.
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I love water sports, I have a little dog.
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Uh I was working full-time, a normal life.
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Are you a painting artist or photography?
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Or uh I was doing a little bit of everything photography, illustration, sculpture.
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Yes.
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Oh, do you have a studio or a place where you sit you sell your art or uh not right now?
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I used to work a lot in art galleries too.
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Okay.
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I was here in in Brooklyn for the first time like 14 years ago for an internship in an art gallery, and then I moved to Europe.
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So I have lived up everywhere.
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How do you like living in Brooklyn?
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I like it.
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I really like it.
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Yes, I really like it.
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I like the people, I like everything, the food.
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So then you had a little bit of an accident that caused an injury.
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Can you what can you share about that?
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Oh, I can't share too much about the accident because it's part of a legal case, but I was involved in an accident around three years ago, three and a half years ago.
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Like I said, I was having like a normal life, and from one second to another, I was disabled.
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Life can change really, really fast.
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Really fast.
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Um I have I have I had multiple injuries around 11 herniated discs at the same time.
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Cervical, thoracic, and lumbar, um, uh shoulder injury and ankles, ankle injury, uh, yeah.
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Oh my goodness.
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Did any of those require immediate surgery?
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Uh I learned that the thoracic herniated discs required immediate surgery, but I never had it.
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Oh, geez.
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I had I had to wait for two years.
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Yes.
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Oh my goodness.
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Yes.
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But for the symptoms I was experiencing, that is an emergency emergency surgery.
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Can you walk us what kind through what kind of symptoms you were having for the thoracic?
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Yes, yes.
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Um the diagnosis was hard to mate because thoracic granulated dust can mimic other disease.
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That's why it's so complex.
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And people they take like years, years of getting the right diagnosis.
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The the nerves in the thoracic spine wrap around the ribs to the front and are attached to the vital organs.
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So you could experience like uh back pain, shoulder blade pain, rib pain, heart palpitations, trouble taking deep breath, gastric issues.
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Oh my goodness.
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I was doing some research for thoracic, and what I see a lot are people saying, my doctors waved me off or ignored me.
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Did you experience that?
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I did.
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I that's why my say my surgery took two years.
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Um I had to wait for two years because it was impossible to find doctors with knowledge on thoracic herniated discs.
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Were they doing medical tests for other diseases or injuries?
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Yes, for other diseases, other injuries, other herniated discs.
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Uh, they were blaming the neck and the lumbar, but my MRI showed that the thoracic herniated disc was bigger and it was causing foramenal stenosis, uh lateral recessed stenosis, and spinal canal stenosis.
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So basically stenosis everywhere.
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And had you gotten your MRI right away, or did it take two years for you just to get the MRI?
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No, it took a while, like six months.
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First, I had uh cervical and lumbar and shoulder, but no one wanted to believe that I was feeling like uh thoracic back pain.
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I was saying, like here, I was pointing like here.
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And they were saying lumbar.
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No, that's not the lumbar spine.
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It took a while.
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Uh, I saw countless doctors, countless doctors.
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They were saying, like, no, that's too rare, it's impossible.
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And even if you have a herniated desk, there is you you don't feel pain or symptoms, you're fine.
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Uh, it's all about the neck and the lumbar.
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I start getting injections, but I knew.
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I mean, you know where the pain comes from, right?
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Right.
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You know your body.
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So you know.
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Yes.
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You got cortisone injections for the thoracic okay.
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I had uh in total around 10.
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10 injections and a cervical thoracic and lumbar.
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I found a good neurologist after a while, and I told him, You need please listen to me.
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You need to believe me.
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The big, the big, the biggest problem is uh between my shoulders.
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It's not the neck, it's not the lumbar, it's not the shoulders, something between my shoulders.
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I think I have a herniated disc there.
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So he gave me the MRI referral, and he said, like, look, don't worry because I was desperate at that point.
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And he said, I will call you when I get the the results.
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A few day days after that, I get a phone call, and he said, I can't believe it.
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I can't believe it.
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You were right.
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You you'd have like six herniated testing in your thoracic spine, not one.
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Oh my goodness.
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Now, is there was there a risk of uh paralysis with that?
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Uh yes.
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Uh T78 was the worst.
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Uh, my neurologist, and one year he was repeating all the tests.
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Uh, I had to see him once a month.
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He was really concerned.
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And at some point he said, like, look, you're right.
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You're simple, uh, you're right about what you're feeling.
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You you're getting paralyzed.
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Oh my goodness.
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But he he didn't knew anyone, he didn't know anyone who could do the surgery, and it was a similar story with my pain management.
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I had uh epidural injections, medication, nerve oblations.
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I had four nerve oblations in different levels, and he said, like, I know the biggest problem is there, but I don't know any surgeon.
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I don't know any surgeon that could help you.
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Oh, I mean, I can't imagine how powerless you feel hearing that.
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Yes, yes.
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At some point, this is this is hard to explain, but I was so dismissed.
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Um, that I thought I was going crazy at the beginning because I I feel this the MRI is showing the problem, but why all the doctors are are telling me it's it's I'm fine.
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Why are they telling me I'm fine?
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Even one of them told me, like, you're fine because you're not in a wheelchair, but I'm in pain.
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Yeah, yeah, and I thought immediately uh about uh on my friend Rachel.
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She's great, she's in a wheelchair, she lives here in an amazing apartment with a waterfront view.
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She has her own company, she's having a great life, and I was bedridden.
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Oh my goodness, did you get waved off like you're just anxiety?
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Did you hear that at all?
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Oh, yes, yeah, the the psychiatric labels.
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That's a thing.
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I was anxious.
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I was anxious, I was depressed, I was confused.
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I'm sure we all we all get anxious and depressed when we're in the right to be anxious and depressed because you have an injury, you have a spine injury, but then your doctors aren't listening to you when you know there's something wrong.
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Uh yes, yes.
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And at some point I had to this, I had to decide like this was really hard because I said, okay, I'm right, everyone is wrong.
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I'm right about this, uh, but then you you can have hope that someone is going to help you.
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It's like I will have to do this by myself, I am alone in this, and I will have to solve it.
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Because even the the two people that believe uh what I'm going through, that they have the knowledge to understand what is happening, they don't know any surgeon.
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So I will have to solve this by myself.
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Yeah, what did you do?
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How did you figure out who can help you?
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I was bed reading most of the time.
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So I was reading.
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I was reading.
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I I started down I download uh a PDF about the spine, the anatomy of the spine.
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And I started reading.
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The book had drawings that helped a lot, and you could see how the nerves were connected, were uh wrapping around the ribs, were connected to the vital organs.
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So it's like, yeah, I'm right, this is what I'm feeling.
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So I'm right.
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And then I continue.
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I couldn't find any literature about uh thoracic herniated this.
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There are no books, but I found around 200 case reports.
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Uh I download the case reports and I start reading, and I start contacting the neurosurgeons in the cases.
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Smart.
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Some of them were too old, some of them were in different countries.
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Some of yes.
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Oh my goodness, you had to teach yourself anatomy, yes, and the nerves and what they do in order to even get yourself.
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Yes.
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Uh diagnosis and treatment.
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Yes, the the herniated disc was also pressing the spinal cord, and those are different symptoms.
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I had myelopathy symptoms, uh I had dizziness, numbness, weakness, uh, brain fog.
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I had a lot of symptoms.
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Wow.
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Constant headache, yes, you can have constant headache uh from uh herniartic dysendio thoracic spine, balance issues.
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Yeah, I think everyone is just so used to the lumbar or the neck or the neck, yeah, tingling arm or pain down the leg.
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Exactly.
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Jeez.
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So who did you finally land on to help you with your treatment?
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Well, uh, someone and when I was trying to contact surgeons mentioned a uh neurosurgeon here, and I'm still like, why not?
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I have seen so many so far.
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Why not?
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So I had my appointment.
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Uh, the first good sign, he walked the patients himself to the office.
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Okay.
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So, oh, okay, okay.
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And then um, he didn't say anything, he said, like, hi, and then he started looking at the MRI in front of me, and I was like, What is this?
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What is it?
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He took a lot of time, and then he said the first thing he said, you need surgery here, T78, and I said, I know, yeah, almost, almost, but I wanted to talk to him, so I said, like, I know, and he said, like, I can explain you the surgery.
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So he started, he got one of those uh small spines, and so I have to make a hold here.
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And I was like, I know, I know, I already read about the surgery.
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I watch a video, I know.
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My only question, and he said, Do you have any questions?
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Yes, when when can we do it tomorrow?
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Can we do it tomorrow, please?
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And he said, No, we need to wait for the insurance to approve this, and that was a long way, too, because the insurance denied the surgery like three times, so I had to wait.
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Now, were you scared about the surgery, or were you at the point where you're like, just give it to me, I need it?
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Look, I knew I was one in a million, because this is the statistics.
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Uh this is what they say like one in a million has uh herniated this in the thoracic spine, and I have multiple, so I've even it's even worse for me.
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Right.
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And even less people have surgery is not a common surgery, it involves more risk than cervical and lumbar spine surgery.
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But I was ready.
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I was ready because my my quality of life was zero.
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I was I was bedridden, suffering.
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So I said, this is I was I was convinced that that was the only option.
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I was ready.
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Yeah, I think it involves more risk because the area is much smaller, yes, right?
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Yes, you're right.
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There is less space compared to the cervical and lumbar, right?
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And the anatomy is different, the bones are different, all the arteries are there, so it's more complex.
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It is possible.
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Many doctors will tell you it's impossible.
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Everyone in the paralyzed don't have thoracic spine surgery.
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Well, that's a lie.
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Also, if a surgeon tells you this is an easy surgery, fast, no pain.
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No, no, the truth's in the middle, you know.
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Yeah, it's possible, but it's more complex.
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Yeah, now compared to what a lumbar disc carniation can look like on an MRI, I've read that the thoracic carniation looks smaller, yes, and so doctors will think it's not an issue, yeah, but because the spaces there is smaller, and yes, we need our doctors to understand that.
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Yeah, exactly.
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Um, I think a common mistake is to think that a herniated this in the thoracic spine is the same as a herniated this in the lumbar cervical.
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No, it's completely different.
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The anatomy is different, the symptoms are different, the treatments are different.
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For example, you had issues finding uh someone that had a microdyskectomy in the thoracic, it's because even the names of the procedures are different.
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Microdysquectomy is like an umbrella term, but for the thoracic spine, uh I had a uh transpedicular thoracic dyscectomy.
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Okay.
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So basically the access is different, right?
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That's why that's why the name is different.
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Right.
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Do you mind describing the surgery?
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Oh, yeah, yes.
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Um uh it was posterior.
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I have a small scar in my back between my shoulders, and then neurosurgeon accessed the disc through the pedicle, which is a little bone, and he removed a piece of the disc.
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No diffusion.
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I don't have like screws or anything.
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Did he have to remove bone at all or was he able to yes?
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A piece of bone, a piece of uh, it's called pedicle.
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He had to remove a little piece of bone.
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Okay, and he removed a small piece of disc, and that's it.
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And was that were you in the hospital that day and went home, or did you have to spend for three days?
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I had to spend three days for monitoring, which is the right thing to do.
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Um you have more risk of CSF leaks with that surgery because there is less space again, so you could have complications, right?
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But everything went well.
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Okay, everything went well.
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I I was I felt the surgery work right away.
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I was waking up and I said, like, I can't believe it.
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I can't believe it.
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Yes, I was feeling the pain of the surgery itself, but not the nerve pain, uh, not the other symptoms, the brain fog was gone, like the headache, everything, everything.
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I can't imagine having brain fog and linking it to a thoracic.
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Thoracic, by the way, for my viewers, is like chest areas.
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From it's like your torso, basically.
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Yes, yeah.
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Yes, yeah, having brain fog and thinking, oh, that must be a herniated disc in my thoracic spine.
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I know no, no one, no one believes that.
00:17:30.240 --> 00:17:39.359
But uh, when something affects your brain, your cervical or thoracic spine, not the lumbar, you can have similar symptoms.
00:17:40.319 --> 00:17:48.960
Very simple, for example, if you have a tumor, uh, the symptoms are very, very similar because your central nervous system is affected.
00:17:50.480 --> 00:17:52.000
So the symptoms are similar.
00:17:52.480 --> 00:17:56.000
And what kind once you got out of the hospital, what was your recovery like?
00:17:56.079 --> 00:17:57.200
Did you have restrictions?
00:17:57.359 --> 00:17:58.000
Was it painful?
00:17:58.640 --> 00:17:58.880
Yes.
00:17:59.200 --> 00:18:03.519
First, um, just I could walk, normal walk with my little dog.
00:18:03.680 --> 00:18:09.359
I was uh I was again slowly going back to my normal life.
00:18:09.599 --> 00:18:13.839
Uh at some point uh after the first follow-up, I had to start PT.
00:18:15.279 --> 00:18:16.720
Nothing crazy.
00:18:17.519 --> 00:18:27.119
And right now, the only restrictions are are small restrictions, like no more extreme sports, no more, no more surfing.
00:18:27.359 --> 00:18:30.480
Um I had to avoid impacts.
00:18:30.640 --> 00:18:41.839
The neurosurgeon asked me because I have so many herniated discs, said like just try to avoid impacts, heavy lifting, avoid heavy lifting, or push something too heavy.
00:18:42.160 --> 00:18:48.319
Just take care, try to avoid accidents or you know what year was your surgery?
00:18:48.400 --> 00:18:49.440
I forgot to ask.
00:18:49.680 --> 00:18:54.079
Around three and a half years, oh no, two two and a half years ago.
00:18:54.319 --> 00:18:58.559
Okay, yes, and you still to this day you have to avoid.
00:18:58.880 --> 00:18:59.759
Yes, yes.
00:18:59.920 --> 00:19:05.279
Uh, it's something that I'm happy to do because I really, really don't want to go through that again.
00:19:06.000 --> 00:19:09.759
Yes, I'm happy to avoid dangerous situations.
00:19:09.920 --> 00:19:11.359
I'm happy, yes.
00:19:11.680 --> 00:19:14.799
During your recovery, did they tell you no bending, lifting, or twisting?
00:19:15.039 --> 00:19:16.079
Yes, yes, okay.
00:19:16.160 --> 00:19:18.640
Yes, so yes, be careful, be careful, be careful.
00:19:18.880 --> 00:19:21.440
Bending, lifting, and twisting, jumping too.
00:19:21.599 --> 00:19:23.039
Yes, be careful.
00:19:24.559 --> 00:19:28.880
How did you you said you were dealing with depression?
00:19:29.359 --> 00:19:37.279
Yes, how did you deal emotionally for those two years it took you to get I was mostly sedated, honestly?
00:19:37.440 --> 00:19:47.119
I was I was taking a medication, a lot of a really, really high dosage of gabapenthin, uh muscle relaxants, clonopin.
00:19:47.440 --> 00:19:48.799
Yeah, yes.
00:19:48.960 --> 00:19:59.440
Uh my neurologist said just just take just try to sleep and take your medication because there is nothing else we can do right now, right?
00:19:59.599 --> 00:20:01.839
So it was really really hard.
00:20:02.160 --> 00:20:02.559
Yes.
00:20:02.799 --> 00:20:04.160
He was he was an angel.
00:20:04.240 --> 00:20:06.880
He used to call me on Fridays after work.
00:20:08.160 --> 00:20:09.519
What doctor does that?
00:20:09.759 --> 00:20:12.640
Like he was he was calling, like, hey, are you still there?
00:20:12.720 --> 00:20:15.759
Basically, so the surgery was a success, yeah.
00:20:17.039 --> 00:20:21.920
Then you decided there's other people out there that need my help.
00:20:22.160 --> 00:20:23.920
That was a big surprise.
00:20:24.319 --> 00:20:36.720
After right after my surgery, uh, I wrote a rant on Reddit, and I said, maybe some one more, two more, and six months will see this.
00:20:37.440 --> 00:20:43.359
No, hundreds, hundreds of people started, they start sending me messages like I can't believe it.
00:20:43.440 --> 00:20:52.480
I was told this is impossible, this surgery doesn't exist, I am in a wheelchair, and then I have been suffering from this for 10 years.
00:20:52.559 --> 00:20:54.960
Uh, no one believed my symptoms.
00:20:56.240 --> 00:20:59.200
So I said, like, okay, we have to do something about it.
00:20:59.440 --> 00:20:59.920
Yeah.
00:21:00.160 --> 00:21:04.400
So you started you started the Reddit community first, and it's called the support group.
00:21:04.480 --> 00:21:12.480
The the support group we started, and within the support group with more people, we said, we we said, what what else we can do?
00:21:12.720 --> 00:21:17.920
So we we started a small nonprofit, uh, thoracic spine health foundation.
00:21:18.000 --> 00:21:19.680
It's it's really small.
00:21:22.240 --> 00:21:26.400
Um, an epidemiologist contacted me through the group.
00:21:26.480 --> 00:21:28.000
She has a hernia at a disk.
00:21:28.160 --> 00:21:30.240
She worked here in New York at Cornell.
00:21:30.960 --> 00:21:42.400
Um someone in North Carolina, he he's uh has a master in in public health, so for now it's the three of us trying to do something about it.
00:21:42.640 --> 00:21:43.119
Oh, great.
00:21:43.519 --> 00:21:44.160
We need help.
00:21:44.319 --> 00:21:45.519
We need help.
00:21:46.160 --> 00:21:47.359
You have a team now.
00:21:47.839 --> 00:21:50.559
Yes, we have a small team.
00:21:50.960 --> 00:21:52.799
And what does your team do for people?
00:21:52.960 --> 00:21:56.880
If somebody was to say, uh log on and go to your website.
00:21:57.359 --> 00:21:59.759
Uh, first of all, it's uh mostly me.
00:22:00.160 --> 00:22:02.319
Answering emails right now.
00:22:02.559 --> 00:22:03.200
Oh, goodness.
00:22:03.519 --> 00:22:20.000
Um, what I do is to give all the information I can answer every question when I can, and if they want to be contact to doctors, I have a small list of doctors in different areas of the country and Europe.
00:22:20.960 --> 00:22:24.960
Um, and I I contact them with the doctors, yes.
00:22:25.119 --> 00:22:26.720
I try to connect them.
00:22:27.039 --> 00:22:28.079
That's amazing.
00:22:28.319 --> 00:22:31.200
What are some of the most common questions you get asked?
00:22:31.440 --> 00:22:34.319
How do I make my doctors to listen to me?
00:22:34.640 --> 00:22:37.119
My honest answer is you can't.
00:22:37.759 --> 00:22:41.599
You can't, because not everyone knows how to listen.
00:22:42.480 --> 00:22:46.799
In every job, even in your family, you have people that don't listen.
00:22:47.279 --> 00:22:48.559
Can you teach them?
00:22:49.119 --> 00:22:50.000
Not really.
00:22:50.960 --> 00:22:59.279
Um, my best advice is to find a different doctor and demand an MRI because that's their best weapon, right?
00:22:59.519 --> 00:23:00.079
Yes, yeah.
00:23:00.240 --> 00:23:04.400
The best tool right now to get a diagnosis is an MRI.
00:23:04.720 --> 00:23:05.039
Okay.
00:23:05.359 --> 00:23:06.079
That's it.
00:23:06.240 --> 00:23:06.799
Yeah.
00:23:07.039 --> 00:23:07.519
Yes.
00:23:07.759 --> 00:23:19.839
And don't wait too much to get an MRI, because unfortunately, I learned during doing this that um tumors and cancer in the thoracic spine are not uncommon.
00:23:20.000 --> 00:23:20.160
Right.
00:23:20.400 --> 00:23:20.799
Why?
00:23:21.039 --> 00:23:24.079
Because the thoracic spine is close to every vital organ.
00:23:24.240 --> 00:23:33.279
So if you have like breast cancer, lung cancer, as soon as the cancer leaves the organ, it goes to the thoracic spine.
00:23:33.440 --> 00:23:35.279
So it's important.
00:23:36.960 --> 00:23:40.079
So you mentioned uh brain fog is a symptom.
00:23:40.319 --> 00:23:40.720
Yes.
00:23:40.799 --> 00:23:55.279
Um I say around your your ribcage, your ribcage, shoulder blade pain, back pain, and when the herniaritis is really, really pressing the the spinal cord, there is also an autonomic dysfunction.
00:23:55.519 --> 00:23:56.799
I had it too.
00:23:57.039 --> 00:23:58.319
Oh, yes.
00:23:58.480 --> 00:24:03.359
The autonomic nervous system is in the thoracic spine, it's right there.
00:24:03.599 --> 00:24:16.960
Yeah, so it gets affected, and the autonomic nervous system controls every automatic function of the body, like heart palpitation, uh the heart rate, sleep.
00:24:17.200 --> 00:24:25.440
Uh you have trouble sleeping, trouble eating, trouble like um with every automatic function, basically.
00:24:25.759 --> 00:24:29.279
Walking, uh everything.
00:24:29.680 --> 00:24:31.359
Swallowing can be difficult, I think.
00:24:31.440 --> 00:24:31.920
I read.
00:24:32.319 --> 00:24:33.519
Yes, yes.
00:24:33.759 --> 00:24:37.200
People will think it's heartburn, they'll get waved waved off because they're yes.
00:24:37.359 --> 00:24:40.079
You have issues eating blocks, yes, right.
00:24:40.319 --> 00:24:40.960
Yes.
00:24:41.359 --> 00:24:46.559
Uh you could have uh episode of hot high blood pressure, which is dangerous.
00:24:46.880 --> 00:24:49.519
So if you have that, please go to the ER.
00:24:50.559 --> 00:24:57.440
The people you're helping most of the time, is it due to some kind of accident, or do you have people who just randomly get that?
00:24:57.519 --> 00:24:58.799
Is a really good question.
00:24:58.880 --> 00:24:59.839
Uh both.
00:25:00.160 --> 00:25:08.000
Sometimes it's a car accident, an accident of some kind, but many times just genetics, you know?
00:25:08.960 --> 00:25:12.240
Sometimes you have a hernia disc because you just have it.
00:25:12.640 --> 00:25:13.279
Yes.
00:25:14.240 --> 00:25:18.000
There are yeah genetic reasons sometimes, bad luck.
00:25:18.160 --> 00:25:18.960
I don't know.
00:25:20.160 --> 00:25:25.359
I told you before the show that my dogs pulled me backwards, and that's how I got my hernia at disc.
00:25:25.599 --> 00:25:34.720
But I had years of back issues before that, of just throwing my back out, and so so maybe that small accident aggravate the problem, right?
00:25:34.960 --> 00:25:37.519
It was there, maybe, and it got worse.
00:25:37.759 --> 00:25:39.839
Yes, gym accidents.
00:25:39.920 --> 00:25:55.200
I see a lot of gym accidents, or yes, or women, when they have a baby, they're carrying the baby all the time and cleaning and doing cooking and doing other stuff, and that can also affect your your back.
00:25:56.559 --> 00:26:04.160
Do you see a difference in in male versus female with how people get treated by the healthcare system?
00:26:04.880 --> 00:26:06.480
Yes, yes.
00:26:06.640 --> 00:26:10.400
Uh women are always anxious, always know what the answer is.
00:26:12.000 --> 00:26:12.960
You and I know what the answer is.
00:26:13.119 --> 00:26:15.119
Yeah, it's not pain, it's anxiety.
00:26:15.359 --> 00:26:19.200
And with this, it's it's a bit complex because of the heart palpitations.
00:26:19.440 --> 00:26:31.039
Many people end up in the yard saying that they're having like heart issues, and usually men get tests and women get a diagnosis of anxiety.
00:26:31.920 --> 00:26:33.039
Yeah, yeah.
00:26:33.279 --> 00:26:38.160
Well, and and just the stress from the whole situation affects women differently.
00:26:38.640 --> 00:26:45.359
I saw someone on your Reddit asking, I I just got the cortisone injection and now my period is messed up.
00:26:45.680 --> 00:26:46.480
Is that normal?
00:26:46.880 --> 00:26:49.599
Yes, it could happen, it could affect your period.
00:26:49.759 --> 00:26:52.960
Yeah, injections injections can affect your period.
00:26:53.200 --> 00:26:56.880
We have a uh a big um post about that.
00:26:57.200 --> 00:26:58.480
Yeah, yeah.
00:26:58.559 --> 00:27:00.720
Your Reddit page is so helpful.
00:27:01.119 --> 00:27:01.680
Thank you.
00:27:01.839 --> 00:27:02.880
Thank you so much.
00:27:03.599 --> 00:27:04.880
And I love your website.
00:27:05.039 --> 00:27:09.839
It's thoracicspine.com or uh dot org.org, okay.
00:27:10.000 --> 00:27:12.559
Yes, or I'll put it up on the screen for people to see.
00:27:12.799 --> 00:27:14.559
Oh, thank you, thank you so much.
00:27:16.400 --> 00:27:22.559
What do you think your biggest takeaway for yourself was from this whole experience?
00:27:23.519 --> 00:27:25.519
That is a good question.
00:27:25.839 --> 00:27:41.039
Um I don't really know, but I have noticed that my confidence and my self-esteem is better than it's better now at 41 than when I was like 20 or 30.
00:27:41.279 --> 00:27:53.599
Yeah, I I really trust myself right now because I had to believe that I was right and everyone was wrong, and I have to basically save myself.
00:27:53.759 --> 00:27:56.000
So I really trust myself right now.
00:27:56.559 --> 00:28:00.720
And the small problems, uh, everything is a small problem right now.
00:28:00.799 --> 00:28:07.839
It's like I can't believe I was worried about that, or I can't believe I was the suffering for this or for that.
00:28:08.000 --> 00:28:09.279
It's like no, no.
00:28:10.000 --> 00:28:10.640
Wow.
00:28:11.119 --> 00:28:15.519
And what kind of help are you looking for as far as your organization goes?
00:28:16.240 --> 00:28:17.839
Oh, we need resources.
00:28:18.079 --> 00:28:23.599
We need uh that the um donations are can be tax deductible.
00:28:23.680 --> 00:28:27.920
So we need resources, we need people, uh, we need hands.
00:28:28.559 --> 00:28:32.640
Because this is not that uncommon.
00:28:33.039 --> 00:28:36.640
We realize that yeah, it's one in a million, but not really.
00:28:37.359 --> 00:28:45.119
More than that, the the biggest problem here is this condition is misdiagnosed and underdiagnosed, right?
00:28:45.519 --> 00:28:50.640
Many, uh almost everyone, I would say almost everyone has been misdiagnosed in the past.
00:28:51.119 --> 00:28:55.839
Muscular, uh psychiatric or fibromyalgia.
00:28:56.799 --> 00:29:01.759
And no one and no one gives them a thoracic spin MRI referral.
00:29:02.880 --> 00:29:09.680
And they were getting labels and labels and labels, but and not a real accurate diagnosis.
00:29:10.079 --> 00:29:10.720
Right.
00:29:11.680 --> 00:29:15.680
So it's more than one in a million, it's more than that.
00:29:16.000 --> 00:29:16.240
Right.
00:29:16.400 --> 00:29:17.920
You are doing amazing work.
00:29:18.480 --> 00:29:19.039
Thank you.
00:29:20.640 --> 00:29:26.000
I'm trying, we're trying, we're trying, we're really trying, yes, yes.
00:29:26.400 --> 00:29:30.559
So now you personally, as far as your thoracic goes, you're feeling great.
00:29:30.720 --> 00:29:31.920
I'm feeling good, yes.
00:29:32.079 --> 00:29:32.960
I'm feeling good.
00:29:33.119 --> 00:29:39.119
Uh from all the near that this guy had, uh, some of them heal during the first year.
00:29:39.440 --> 00:29:44.799
First, the lumbar ones, I still have like two, but are asymptomatic.
00:29:45.039 --> 00:29:45.359
Okay.
00:29:45.680 --> 00:29:49.680
Then the cervical, I have two, not four.
00:29:50.319 --> 00:29:53.119
And one is under uh observation.
00:29:53.200 --> 00:30:01.519
One I I monitor one with one MRI per year because that one is more central, uh, direct into the spinal cord.
00:30:01.920 --> 00:30:05.200
And if that progress, I will get uh this replacement.
00:30:05.359 --> 00:30:10.559
But the thoracic spine is fine, I'm not in pain, I don't have any symptoms.
00:30:10.799 --> 00:30:15.200
It's hard to believe, but I'm having a normal life again.
00:30:15.759 --> 00:30:16.480
That's awesome.
00:30:16.720 --> 00:30:27.440
Did they ever say when you were getting your uh when the doctor finally agreed to do surgery for your thoracic, was fusion offered as well, or was it just the dissectomy?
00:30:27.680 --> 00:30:33.599
Oh no, I was lucky enough that my doctor said uh no, uh just a dissectomy.
00:30:33.839 --> 00:30:38.559
Okay, yeah, so I was lucky that I got a minimally invasive option.
00:30:39.279 --> 00:30:39.759
Yes.
00:30:40.000 --> 00:30:41.759
Did you have that surgery here in the US?
00:30:41.839 --> 00:30:44.480
Or is here in the US, here in New York, yes.
00:30:44.720 --> 00:30:47.039
Okay, all right, yes, awesome.
00:30:47.119 --> 00:30:49.599
Are you allowed to say which doctor you uh you use?
00:30:49.920 --> 00:30:50.799
No, I'm not.
00:30:50.960 --> 00:30:52.640
He he made me promise.
00:30:52.880 --> 00:30:57.039
He made me promise, please don't mention me on social media.
00:30:57.359 --> 00:30:58.000
Why?
00:30:58.480 --> 00:31:00.880
Because he's extremely busy.
00:31:01.039 --> 00:31:04.640
Yeah, you go to his office and it's packed, there is no space.
00:31:04.799 --> 00:31:06.960
He said, Like, have you seen my office outside?
00:31:07.200 --> 00:31:14.079
Like, please don't, but but he said, I'm happy to see everyone, just prefer them.
00:31:14.319 --> 00:31:20.160
Okay, I I will see them, but please don't don't mention me too much in social media, yeah.
00:31:20.799 --> 00:31:22.319
All right, it will be honored.
00:31:23.200 --> 00:31:25.680
Yes, yes, and he was uh good.
00:31:25.759 --> 00:31:27.279
Uh this is this is really good.
00:31:27.440 --> 00:31:33.200
He was recently named director of spine surgery at a big hospital here in New York.
00:31:33.440 --> 00:31:36.799
Okay, so he's he's he's really busy, yeah.
00:31:37.039 --> 00:31:39.119
Yes, he must be really good.
00:31:39.519 --> 00:31:41.440
He is, he is, yes.
00:31:41.599 --> 00:31:43.519
Um, this is interesting.
00:31:43.680 --> 00:31:53.759
He was uh before he's around 50-51 years old, and before he was director of uh neuro cancer in a different hospital and neurotrauma.
00:31:54.160 --> 00:32:09.039
So when people ask me how how how can I find a surgeon, find a surgeon that has worked with cancer or um scoliosis reconstruction, because they deal with the thoracic spine really often.
00:32:09.359 --> 00:32:09.599
Right.
00:32:09.680 --> 00:32:10.799
Oh, that's smart.
00:32:11.039 --> 00:32:11.519
Yes.
00:32:11.839 --> 00:32:19.920
Is there anything else that you would like for people dealing with thoracic discs to know or to understand?
00:32:20.160 --> 00:32:21.440
You're not crazy.
00:32:22.000 --> 00:32:26.319
You're not crazy, your pain is real, all your symptoms are real.
00:32:27.119 --> 00:32:32.079
Um, I know they have been gaslighted for years, for years.
00:32:32.240 --> 00:32:41.039
So it's hard for them to trust again, to see a doctor again, but uh keep trying, keep trying because it's the only the only way.
00:32:41.200 --> 00:32:43.200
Now let's think back to your recovery.
00:32:43.359 --> 00:32:46.160
Okay, you had the no bending, lifting, or twisting.
00:32:46.319 --> 00:32:46.720
Yes.
00:32:46.960 --> 00:32:51.599
Did you have any tools to help you live during that restriction that were your favorite?
00:32:51.920 --> 00:32:54.400
I was like I was feeling so good.
00:32:55.119 --> 00:32:57.039
I feel so good after.
00:32:57.279 --> 00:33:06.319
Oh but I was really weak, like extremely weak because I was bed rhythm for two years, so I was extremely weak, right?
00:33:06.480 --> 00:33:10.240
Yes, so that makes the recovery like harder.
00:33:10.480 --> 00:33:11.279
Oh, definitely.
00:33:11.440 --> 00:33:15.680
I have to build muscles like really, really slow, and it was painful.
00:33:16.000 --> 00:33:16.960
Yes, yes.
00:33:17.200 --> 00:33:20.000
I uh, you know, I was hurt in April.
00:33:20.240 --> 00:33:28.799
Uh I like a small injury, and then my major injury was in June, and then I got my surgery in August.
00:33:29.039 --> 00:33:32.720
Okay, and then my I think my PT started in October.
00:33:32.799 --> 00:33:37.119
So from April to October, I I didn't move, I didn't use my muscles.
00:33:37.279 --> 00:33:41.920
And when I started moving again, it was so painful.
00:33:42.160 --> 00:33:43.599
Yes, it is painful.
00:33:44.400 --> 00:33:45.920
Your muscles are like, what are you doing?
00:33:46.000 --> 00:33:46.880
Uh what are you doing?
00:33:46.960 --> 00:33:48.559
No, we're lazy now.
00:33:52.720 --> 00:33:54.559
Physical therapy was a huge help.
00:33:54.799 --> 00:33:55.920
Yes, yes.
00:33:56.079 --> 00:34:00.480
Uh, for me, it was better after the surgery, it was really, really good.
00:34:00.640 --> 00:34:03.839
Before the surgery, I I couldn't really do anything.
00:34:03.920 --> 00:34:09.280
I I was going to PT, but just for the mustache, because I couldn't barely move.
00:34:12.159 --> 00:34:18.960
Like, no, you're too injured to too many things, but but I was getting the massage that helped.
00:34:19.119 --> 00:34:21.519
Now I know you said you're you're 41, right?
00:34:21.599 --> 00:34:24.159
Now, yes, so your injury was 39.
00:34:24.639 --> 00:34:26.480
37 when I had my injury.
00:34:26.639 --> 00:34:27.280
Yes, okay.
00:34:27.519 --> 00:34:28.480
I was 37.
00:34:28.880 --> 00:34:31.280
Were they telling you you're too young for surgery at that point?
00:34:31.599 --> 00:34:36.159
Yeah, yes, you're too young for spine surgery.
00:34:36.480 --> 00:34:37.920
What what do you mean?
00:34:38.000 --> 00:34:41.679
I mean, kids have spine surgery all the time.
00:34:41.840 --> 00:34:44.159
They have accidents, they have scoliosis.
00:34:44.320 --> 00:34:46.239
Uh, what are you talking about?
00:34:46.400 --> 00:34:49.280
There is no age for for back problems.
00:34:50.320 --> 00:34:52.639
Yeah, why do you want me to be in pain longer?
00:34:52.719 --> 00:34:53.760
And just so I get it.
00:34:53.920 --> 00:34:59.039
Yeah, when I'll when I'll be too old at 70, and then what I'll be too old for spine surgery.
00:34:59.199 --> 00:34:59.760
Yeah, yeah.
00:34:59.920 --> 00:35:01.599
Tell me how much I had to wait.
00:35:01.679 --> 00:35:04.159
Like when I'll be too old or old enough.
00:35:04.719 --> 00:35:08.880
Yeah, I saw you write in a post that you had to channel your inner Karen.
00:35:09.280 --> 00:35:11.280
Oh, yes, with a doctor.
00:35:12.079 --> 00:35:13.119
This is embarrassing.
00:35:13.280 --> 00:35:14.880
This is a bit embarrassing.
00:35:15.119 --> 00:35:20.320
It's not, it's not embarrassing when when you need to advocate for your health for yourself.
00:35:20.559 --> 00:35:27.760
Yeah, it's unit's unfortunate that we have to even label ourselves that way when we're trying to advocate for our health.
00:35:28.079 --> 00:35:31.840
You have to to become a super carried to get the help you need.
00:35:32.000 --> 00:35:33.440
Is that kind of unfair?
00:35:33.599 --> 00:35:39.199
Because I'm nice, I tried to be nice, but oh my god, I was a monster.
00:35:39.440 --> 00:35:44.719
I was feeling bad for for the poor soul that had that that had an appointment with me.
00:35:44.800 --> 00:35:46.239
Like, oh my god.
00:35:48.079 --> 00:35:53.519
Yeah, I have one of those unfortunate personalities where I worry about getting on people's nerves.
00:35:53.679 --> 00:36:00.880
Okay, so I won't tell my doctor, yeah, I just don't want him to be annoyed, or you know, that kind of stuff.
00:36:00.960 --> 00:36:04.480
And my husband's always like, Can you just call and ask, please?
00:36:05.760 --> 00:36:15.840
Yes, it's like um, I think I developed like a another person, a different personality, like a split personality or something like that.
00:36:16.239 --> 00:36:20.079
Because it's like, uh, I I need I need you to do your job.
00:36:20.320 --> 00:36:22.960
Like now I'm paying for this.
00:36:23.199 --> 00:36:25.119
So these are the symptoms.
00:36:25.360 --> 00:36:27.519
Have a seat and let's have a conversation.
00:36:27.679 --> 00:36:30.559
Take the time I need, answer my questions.
00:36:31.440 --> 00:36:44.719
Sophia, I'm sorry that you had to go through this experience, but I'm happy that you're using this experience to reach out and be a help to other people in need.
00:36:45.119 --> 00:36:47.760
I feel it's the only thing I can do right now.
00:36:49.039 --> 00:36:50.639
It gives you a sense of purpose, right?
00:36:50.719 --> 00:36:57.440
And it kind of gives meaning, gives meaning to the accident, the suffering, the experience.
00:36:57.599 --> 00:36:58.800
Yeah, yeah, yeah.
00:36:59.119 --> 00:37:07.599
It has some meaning, and and I hope to I hope I can do something positive with uh all the negative things that happened to me.
00:37:07.760 --> 00:37:11.599
Yeah, you are, you already are doing something positive.
00:37:13.199 --> 00:37:14.000
Thank you.
00:37:14.480 --> 00:37:20.400
Well, I just want to say thank you again for being on this episode of Bed Back and Beyond.
00:37:20.639 --> 00:37:31.199
If you are a listener and you've healed positively from a neck or back injury and you would like to share your story, head over to bedbackbeyond.com and click share your story.
00:37:31.440 --> 00:37:33.519
Sophia, this is going to be a big help.
00:37:33.679 --> 00:37:42.079
Uh I hope people that are being gaslit or misdiagnosed see this and really reach out and get the help that they need.
00:37:42.400 --> 00:37:43.440
Thank you again.
00:37:43.599 --> 00:37:44.800
Thanks for inviting me.
00:37:44.880 --> 00:37:48.960
And I hope this helps someone out there that is suffering right now.
00:37:49.280 --> 00:37:49.920
I hope.
00:37:50.559 --> 00:37:51.360
Absolutely.