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

Your ribs hurt, your heart races, your stomach is off, you can’t take a deep breath, and somehow you keep getting told the problem is “just anxiety.” That gap between what you feel and what you’re told can make anyone doubt themselves, especially with thoracic herniated disc symptoms that don’t look like the classic lumbar or cervical patterns. 

I sit down with Sophia, a Chilean artist living in Brooklyn, whose life flips overnight after an accident leaves her with multiple herniated discs including severe thoracic disc herniation at T7-T8. She shares what it’s like to spend months searching for a thoracic spine MRI referral, hearing “too rare” from doctor after doctor, and realizing the thoracic spine can create rib pain, shoulder blade pain, heart palpitations, trouble breathing, gastric issues, brain fog, headaches, and even autonomic dysfunction when the spinal cord is involved. We also talk about the very real emotional toll of being dismissed, sedated, and forced to keep pushing when you’re exhausted. 

Sophia explains how she taught herself spine anatomy, hunted down thoracic case reports, and finally found a surgeon who performed a transpedicular thoracic discectomy. She walks us through the procedure, why thoracic spine surgery is more complex, what recovery restrictions look like (no bending, lifting, twisting), and how physical therapy helps you rebuild after being bedridden. After getting her life back, she turns that hard-won knowledge into action by building a support group and the Thoracic Spine Health Foundation, connecting people to information and doctors who actually understand thoracic disc disease. 

If this conversation helps you, subscribe, share it with someone who’s being gaslit, and leave a review so more people can find it.

Transcript

You’re Not Crazy

SPEAKER_01 0:00

You're not crazy. You're not crazy. Your pain is real. All your symptoms are real.

SPEAKER_00 0:06

Welcome to Bed Back and Beyond, sharing positive stories of recovery from serious back or neck injury. Your host is CK, a fellow champion who draws on her own experience with permeated disc surgery. Join her as she talks with others who have overcome the physical and emotional trauma of a painful injury. And discover for yourself how you can find hope and encouragement in recovery.

Meet Sophia The Artist

SPEAKER_02 0:35

Welcome to this episode of Bed Back and Beyond. I am super excited for this episode. 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. And I came across Sophia on Reddit. 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. Sophia, hi, hi. Thank you so much for joining me. No, thank you for inviting me. Yes. So before we talk about your injury, do you mind just telling us about yourself? About myself.

SPEAKER_01 1:16

Well, you notice I have a thick accent. I grew up in South America. I come from Chile. I live in Brooklyn. I have been here for eight years. I am an artist. Um, before my accident, I used to have a normal life. I love water sports, I have a little dog. Uh I was working full-time, a normal life. Are you a painting artist or photography? Or uh I was doing a little bit of everything photography, illustration, sculpture. Yes.

SPEAKER_02 1:46

Oh, do you have a studio or a place where you sit you sell your art or uh not right now?

SPEAKER_01 1:53

I used to work a lot in art galleries too.

SPEAKER_02 1:56

Okay.

SPEAKER_01 1:56

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. So I have lived up everywhere. How do you like living in Brooklyn? I like it. I really like it. Yes, I really like it. I like the people, I like everything, the food.

The Accident And Many Discs

SPEAKER_02 2:15

So then you had a little bit of an accident that caused an injury. Can you what can you share about that?

SPEAKER_01 2:22

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. Like I said, I was having like a normal life, and from one second to another, I was disabled. Life can change really, really fast. Really fast. Um I have I have I had multiple injuries around 11 herniated discs at the same time. Cervical, thoracic, and lumbar, um, uh shoulder injury and ankles, ankle injury, uh, yeah.

SPEAKER_02 3:03

Oh my goodness. Did any of those require immediate surgery?

SPEAKER_01 3:07

Uh I learned that the thoracic herniated discs required immediate surgery, but I never had it. Oh, geez. I had I had to wait for two years. Yes. Oh my goodness. Yes. But for the symptoms I was experiencing, that is an emergency emergency surgery.

SPEAKER_02 3:28

Can you walk us what kind through what kind of symptoms you were having for the thoracic?

Thoracic Symptoms Doctors Miss

SPEAKER_02 3:32

Yes, yes.

SPEAKER_01 3:34

Um the diagnosis was hard to mate because thoracic granulated dust can mimic other disease. That's why it's so complex. And people they take like years, years of getting the right diagnosis. The the nerves in the thoracic spine wrap around the ribs to the front and are attached to the vital organs. So you could experience like uh back pain, shoulder blade pain, rib pain, heart palpitations, trouble taking deep breath, gastric issues.

SPEAKER_02 4:07

Oh my goodness. I was doing some research for thoracic, and what I see a lot are people saying, my doctors waved me off or ignored me. Did you experience that?

SPEAKER_01 4:19

I did. I that's why my say my surgery took two years. Um I had to wait for two years because it was impossible to find doctors with knowledge on thoracic herniated discs.

SPEAKER_02 4:32

Were they doing medical tests for other diseases or injuries?

SPEAKER_01 4:37

Yes, for other diseases, other injuries, other herniated discs. 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. So basically stenosis everywhere.

SPEAKER_02 5:03

And had you gotten your MRI right away, or did it take two years for you just to get the MRI?

SPEAKER_01 5:07

No, it took a while, like six months. First, I had uh cervical and lumbar and shoulder, but no one wanted to believe that I was feeling like uh thoracic back pain. I was saying, like here, I was pointing like here. And they were saying lumbar. No, that's not the lumbar spine. It took a while. Uh, I saw countless doctors, countless doctors. They were saying, like, no, that's too rare, it's impossible. And even if you have a herniated desk, there is you you don't feel pain or symptoms, you're fine. Uh, it's all about the neck and the lumbar. I start getting injections, but I knew. I mean, you know where the pain comes from, right? Right. You know your body. So you know. Yes.

SPEAKER_02 5:55

You got cortisone injections for the thoracic okay.

SPEAKER_01 5:59

I had uh in total around 10. 10 injections and a cervical thoracic and lumbar. I found a good neurologist after a while, and I told him, You need please listen to me. You need to believe me. The big, the big, the biggest problem is uh between my shoulders. It's not the neck, it's not the lumbar, it's not the shoulders, something between my shoulders. I think I have a herniated disc there. So he gave me the MRI referral, and he said, like, look, don't worry because I was desperate at that point. And he said, I will call you when I get the the results. A few day days after that, I get a phone call, and he said, I can't believe it. I can't believe it. You were right. You you'd have like six herniated testing in your thoracic spine, not one. Oh my goodness. Now, is there was there a risk of uh paralysis with that? Uh yes. Uh T78 was the worst. Uh, my neurologist, and one year he was repeating all the tests. Uh, I had to see him once a month. He was really concerned. And at some point he said, like, look, you're right. You're simple, uh, you're right about what you're feeling. You you're getting paralyzed.

SPEAKER_02 7:16

Oh my goodness.

SPEAKER_01 7:17

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. I had uh epidural injections, medication, nerve oblations. 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. I don't know any surgeon that could help you.

SPEAKER_02 7:42

Oh, I mean, I can't imagine how powerless you feel hearing that.

SPEAKER_01 7:48

Yes, yes. At some point, this is this is hard to explain, but I was so dismissed. 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. Why are they telling me I'm fine? Even one of them told me, like, you're fine because you're not in a wheelchair, but I'm in pain. Yeah, yeah, and I thought immediately uh about uh on my friend Rachel. She's great, she's in a wheelchair, she lives here in an amazing apartment with a waterfront view. She has her own company, she's having a great life, and I was bedridden.

SPEAKER_02 8:34

Oh my goodness, did you get waved off like you're just anxiety? Did you hear that at all? Oh, yes, yeah, the the psychiatric labels.

SPEAKER_01 8:42

That's a thing. I was anxious. I was anxious, I was depressed, I was confused. 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. Uh yes, yes. 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. I'm right about this, uh, but then you you can have hope that someone is going to help you. It's like I will have to do this by myself, I am alone in this, and I will have to solve it. 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. So I will have to solve this by myself.

Researching Case Reports To Find Help

SPEAKER_01 9:39

Yeah, what did you do? How did you figure out who can help you? I was bed reading most of the time. So I was reading. I was reading. I I started down I download uh a PDF about the spine, the anatomy of the spine. And I started reading. 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. So it's like, yeah, I'm right, this is what I'm feeling. So I'm right. And then I continue. I couldn't find any literature about uh thoracic herniated this. There are no books, but I found around 200 case reports. Uh I download the case reports and I start reading, and I start contacting the neurosurgeons in the cases. Smart. Some of them were too old, some of them were in different countries. Some of yes.

SPEAKER_02 10:39

Oh my goodness, you had to teach yourself anatomy, yes, and the nerves and what they do in order to even get yourself.

SPEAKER_01 10:48

Yes.

SPEAKER_02 10:49

Uh diagnosis and treatment.

SPEAKER_01 10:51

Yes, the the herniated disc was also pressing the spinal cord, and those are different symptoms. I had myelopathy symptoms, uh I had dizziness, numbness, weakness, uh, brain fog. I had a lot of symptoms. Wow. Constant headache, yes, you can have constant headache uh from uh herniartic dysendio thoracic spine, balance issues.

SPEAKER_02 11:22

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. Exactly. Jeez. So who did you finally land on to help you with your treatment?

The Surgeon Who Finally Says Yes

SPEAKER_01 11:36

Well, uh, someone and when I was trying to contact surgeons mentioned a uh neurosurgeon here, and I'm still like, why not? I have seen so many so far. Why not? So I had my appointment. Uh, the first good sign, he walked the patients himself to the office. Okay. So, oh, okay, okay. 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? What is it? 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. So he started, he got one of those uh small spines, and so I have to make a hold here. And I was like, I know, I know, I already read about the surgery. I watch a video, I know. My only question, and he said, Do you have any questions? Yes, when when can we do it tomorrow? Can we do it tomorrow, please? 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.

SPEAKER_02 13:06

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?

SPEAKER_01 13:11

Look, I knew I was one in a million, because this is the statistics. 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. Right. And even less people have surgery is not a common surgery, it involves more risk than cervical and lumbar spine surgery. But I was ready. I was ready because my my quality of life was zero. I was I was bedridden, suffering. So I said, this is I was I was convinced that that was the only option. I was ready.

SPEAKER_02 13:56

Yeah, I think it involves more risk because the area is much smaller, yes, right?

SPEAKER_01 14:02

Yes, you're right. There is less space compared to the cervical and lumbar, right? And the anatomy is different, the bones are different, all the arteries are there, so it's more complex. It is possible. Many doctors will tell you it's impossible. Everyone in the paralyzed don't have thoracic spine surgery. Well, that's a lie. Also, if a surgeon tells you this is an easy surgery, fast, no pain. No, no, the truth's in the middle, you know. Yeah, it's possible, but it's more complex.

SPEAKER_02 14:37

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.

SPEAKER_01 14:59

Yeah, exactly. 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. No, it's completely different. The anatomy is different, the symptoms are different, the treatments are different. 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. Microdysquectomy is like an umbrella term, but for the thoracic spine, uh I had a uh transpedicular thoracic dyscectomy.

SPEAKER_02 15:38

Okay.

SPEAKER_01 15:39

So basically the access is different, right?

SPEAKER_02 15:43

That's why that's why the name is different. Right. Do you mind describing the surgery? Oh, yeah, yes.

SPEAKER_01 15:50

Um uh it was posterior. 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. No diffusion. I don't have like screws or anything. Did he have to remove bone at all or was he able to yes? A piece of bone, a piece of uh, it's called pedicle. He had to remove a little piece of bone.

SPEAKER_02 16:18

Okay, and he removed a small piece of disc, and that's it. And was that were you in the hospital that day and went home, or did you have to spend for three days?

SPEAKER_01 16:28

I had to spend three days for monitoring, which is the right thing to do. Um you have more risk of CSF leaks with that surgery because there is less space again, so you could have complications, right? But everything went well. Okay, everything went well. I I was I felt the surgery work right away. I was waking up and I said, like, I can't believe it. I can't believe it. 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.

SPEAKER_02 17:09

I can't imagine having brain fog and linking it to a thoracic. Thoracic, by the way, for my viewers, is like chest areas.

SPEAKER_01 17:18

From it's like your torso, basically. Yes, yeah.

SPEAKER_02 17:22

Yes, yeah, having brain fog and thinking, oh, that must be a herniated disc in my thoracic spine. I know no, no one, no one believes that.

SPEAKER_01 17:30

But uh, when something affects your brain, your cervical or thoracic spine, not the lumbar, you can have similar symptoms. Very simple, for example, if you have a tumor, uh, the symptoms are very, very similar because your central nervous system is affected. So the symptoms are similar.

SPEAKER_02 17:52

And what kind once you got out of the hospital, what was your recovery like?

Recovery Rules PT And Meds

SPEAKER_02 17:56

Did you have restrictions? Was it painful?

SPEAKER_01 17:58

Yes. First, um, just I could walk, normal walk with my little dog. I was uh I was again slowly going back to my normal life. Uh at some point uh after the first follow-up, I had to start PT. Nothing crazy. And right now, the only restrictions are are small restrictions, like no more extreme sports, no more, no more surfing. Um I had to avoid impacts. 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. Just take care, try to avoid accidents or you know what year was your surgery?

SPEAKER_02 18:48

I forgot to ask.

SPEAKER_01 18:49

Around three and a half years, oh no, two two and a half years ago. Okay, yes, and you still to this day you have to avoid. Yes, yes. Uh, it's something that I'm happy to do because I really, really don't want to go through that again. Yes, I'm happy to avoid dangerous situations. I'm happy, yes.

SPEAKER_02 19:11

During your recovery, did they tell you no bending, lifting, or twisting? Yes, yes, okay.

SPEAKER_01 19:16

Yes, so yes, be careful, be careful, be careful. Bending, lifting, and twisting, jumping too. Yes, be careful.

SPEAKER_02 19:24

How did you you said you were dealing with depression? Yes, how did you deal emotionally for those two years it took you to get I was mostly sedated, honestly?

SPEAKER_01 19:37

I was I was taking a medication, a lot of a really, really high dosage of gabapenthin, uh muscle relaxants, clonopin. Yeah, yes. 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? So it was really really hard. Yes. He was he was an angel. He used to call me on Fridays after work. What doctor does that? Like he was he was calling, like, hey, are you still there?

SPEAKER_02 20:12

Basically, so the surgery was a success, yeah.

Turning Pain Into A Foundation

SPEAKER_02 20:17

Then you decided there's other people out there that need my help.

SPEAKER_01 20:22

That was a big surprise. 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. No, hundreds, hundreds of people started, they start sending me messages like I can't believe it. 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. Uh, no one believed my symptoms. So I said, like, okay, we have to do something about it.

SPEAKER_02 20:59

Yeah. So you started you started the Reddit community first, and it's called the support group.

SPEAKER_01 21:04

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? So we we started a small nonprofit, uh, thoracic spine health foundation. It's it's really small. Um, an epidemiologist contacted me through the group. She has a hernia at a disk. She worked here in New York at Cornell. 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. Oh, great. We need help. We need help.

SPEAKER_02 21:46

You have a team now. Yes, we have a small team. And what does your team do for people? If somebody was to say, uh log on and go to your website.

SPEAKER_01 21:57

Uh, first of all, it's uh mostly me. Answering emails right now. Oh, goodness. 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. Um, and I I contact them with the doctors, yes.

SPEAKER_02 22:25

I try to connect them. That's amazing. What are some of the most common questions you get asked?

SPEAKER_01 22:31

How do I make my doctors to listen to me? My honest answer is you can't. You can't, because not everyone knows how to listen. In every job, even in your family, you have people that don't listen. Can you teach them? Not really. Um, my best advice is to find a different doctor and demand an MRI because that's their best weapon, right? Yes, yeah. The best tool right now to get a diagnosis is an MRI.

SPEAKER_02 23:04

Okay.

SPEAKER_01 23:05

That's it.

SPEAKER_02 23:06

Yeah.

SPEAKER_01 23:07

Yes. 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.

unknown 23:20

Right.

SPEAKER_01 23:20

Why? Because the thoracic spine is close to every vital organ. So if you have like breast cancer, lung cancer, as soon as the cancer leaves the organ, it goes to the thoracic spine. So it's important.

SPEAKER_02 23:36

So you mentioned uh brain fog is a symptom. Yes.

SPEAKER_01 23:40

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. I had it too. Oh, yes. The autonomic nervous system is in the thoracic spine, it's right there. 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. Uh you have trouble sleeping, trouble eating, trouble like um with every automatic function, basically. Walking, uh everything.

SPEAKER_02 24:29

Swallowing can be difficult, I think. I read.

SPEAKER_01 24:32

Yes, yes.

SPEAKER_02 24:33

People will think it's heartburn, they'll get waved waved off because they're yes. You have issues eating blocks, yes, right.

SPEAKER_01 24:40

Yes. Uh you could have uh episode of hot high blood pressure, which is dangerous. So if you have that, please go to the ER.

SPEAKER_02 24:50

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?

SPEAKER_01 24:57

Is a really good question. Uh both. Sometimes it's a car accident, an accident of some kind, but many times just genetics, you know? Sometimes you have a hernia disc because you just have it.

SPEAKER_02 25:12

Yes.

SPEAKER_01 25:14

There are yeah genetic reasons sometimes, bad luck. I don't know.

SPEAKER_02 25:20

I told you before the show that my dogs pulled me backwards, and that's how I got my hernia at disc. 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?

SPEAKER_01 25:34

It was there, maybe, and it got worse. Yes, gym accidents. 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.

SPEAKER_02 25:56

Do you see a difference in in male versus female with how people get treated by the healthcare system? Yes, yes.

SPEAKER_01 26:06

Uh women are always anxious, always know what the answer is. You and I know what the answer is. Yeah, it's not pain, it's anxiety. And with this, it's it's a bit complex because of the heart palpitations. 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.

SPEAKER_02 26:31

Yeah, yeah. Well, and and just the stress from the whole situation affects women differently. I saw someone on your Reddit asking, I I just got the cortisone injection and now my period is messed up. Is that normal?

SPEAKER_01 26:46

Yes, it could happen, it could affect your period. Yeah, injections injections can affect your period. We have a uh a big um post about that.

SPEAKER_02 26:57

Yeah, yeah. Your Reddit page is so helpful. Thank you. Thank you so much. And I love your website. It's thoracicspine.com or uh dot org.org, okay. Yes, or I'll put it up on the screen for people to see. Oh, thank you, thank you so much.

Self-Trust Advocacy And Final Advice

SPEAKER_02 27:16

What do you think your biggest takeaway for yourself was from this whole experience?

SPEAKER_01 27:23

That is a good question. 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. 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. So I really trust myself right now. And the small problems, uh, everything is a small problem right now. 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. It's like no, no.

SPEAKER_02 28:10

Wow. And what kind of help are you looking for as far as your organization goes?

SPEAKER_01 28:16

Oh, we need resources. We need uh that the um donations are can be tax deductible. So we need resources, we need people, uh, we need hands. Because this is not that uncommon. We realize that yeah, it's one in a million, but not really. More than that, the the biggest problem here is this condition is misdiagnosed and underdiagnosed, right? Many, uh almost everyone, I would say almost everyone has been misdiagnosed in the past. Muscular, uh psychiatric or fibromyalgia. And no one and no one gives them a thoracic spin MRI referral. And they were getting labels and labels and labels, but and not a real accurate diagnosis.

SPEAKER_02 29:10

Right.

SPEAKER_01 29:11

So it's more than one in a million, it's more than that.

SPEAKER_02 29:16

Right. You are doing amazing work.

SPEAKER_01 29:18

Thank you. I'm trying, we're trying, we're trying, we're really trying, yes, yes.

SPEAKER_02 29:26

So now you personally, as far as your thoracic goes, you're feeling great. I'm feeling good, yes.

SPEAKER_01 29:32

I'm feeling good. Uh from all the near that this guy had, uh, some of them heal during the first year. First, the lumbar ones, I still have like two, but are asymptomatic. Okay. Then the cervical, I have two, not four. And one is under uh observation. One I I monitor one with one MRI per year because that one is more central, uh, direct into the spinal cord. And if that progress, I will get uh this replacement. But the thoracic spine is fine, I'm not in pain, I don't have any symptoms. It's hard to believe, but I'm having a normal life again.

SPEAKER_02 30:15

That's awesome. 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?

SPEAKER_01 30:27

Oh no, I was lucky enough that my doctor said uh no, uh just a dissectomy. Okay, yeah, so I was lucky that I got a minimally invasive option. Yes. Did you have that surgery here in the US? Or is here in the US, here in New York, yes. Okay, all right, yes, awesome.

SPEAKER_02 30:47

Are you allowed to say which doctor you uh you use?

SPEAKER_01 30:49

No, I'm not. He he made me promise. He made me promise, please don't mention me on social media. Why? Because he's extremely busy. Yeah, you go to his office and it's packed, there is no space. He said, Like, have you seen my office outside? Like, please don't, but but he said, I'm happy to see everyone, just prefer them. Okay, I I will see them, but please don't don't mention me too much in social media, yeah.

SPEAKER_02 31:20

All right, it will be honored.

SPEAKER_01 31:23

Yes, yes, and he was uh good. Uh this is this is really good. He was recently named director of spine surgery at a big hospital here in New York. Okay, so he's he's he's really busy, yeah.

SPEAKER_02 31:37

Yes, he must be really good.

SPEAKER_01 31:39

He is, he is, yes. Um, this is interesting. 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. 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.

SPEAKER_02 32:09

Right. Oh, that's smart. Yes. Is there anything else that you would like for people dealing with thoracic discs to know or to understand?

SPEAKER_01 32:20

You're not crazy. You're not crazy, your pain is real, all your symptoms are real. Um, I know they have been gaslighted for years, for years. 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.

SPEAKER_02 32:41

Now let's think back to your recovery. Okay, you had the no bending, lifting, or twisting. Yes. Did you have any tools to help you live during that restriction that were your favorite?

SPEAKER_01 32:51

I was like I was feeling so good. I feel so good after. Oh but I was really weak, like extremely weak because I was bed rhythm for two years, so I was extremely weak, right? Yes, so that makes the recovery like harder. Oh, definitely. I have to build muscles like really, really slow, and it was painful.

SPEAKER_02 33:16

Yes, yes. I uh, you know, I was hurt in April. Uh I like a small injury, and then my major injury was in June, and then I got my surgery in August. Okay, and then my I think my PT started in October. So from April to October, I I didn't move, I didn't use my muscles. And when I started moving again, it was so painful. Yes, it is painful. Your muscles are like, what are you doing? Uh what are you doing? No, we're lazy now. Physical therapy was a huge help.

SPEAKER_01 33:54

Yes, yes. Uh, for me, it was better after the surgery, it was really, really good. Before the surgery, I I couldn't really do anything. I I was going to PT, but just for the mustache, because I couldn't barely move. Like, no, you're too injured to too many things, but but I was getting the massage that helped.

SPEAKER_02 34:19

Now I know you said you're you're 41, right? Now, yes, so your injury was 39.

SPEAKER_01 34:24

37 when I had my injury. Yes, okay. I was 37. Were they telling you you're too young for surgery at that point? Yeah, yes, you're too young for spine surgery. What what do you mean? I mean, kids have spine surgery all the time. They have accidents, they have scoliosis. Uh, what are you talking about? There is no age for for back problems.

SPEAKER_02 34:50

Yeah, why do you want me to be in pain longer? And just so I get it.

SPEAKER_01 34:53

Yeah, when I'll when I'll be too old at 70, and then what I'll be too old for spine surgery. Yeah, yeah. Tell me how much I had to wait. Like when I'll be too old or old enough.

SPEAKER_02 35:04

Yeah, I saw you write in a post that you had to channel your inner Karen. Oh, yes, with a doctor. This is embarrassing. This is a bit embarrassing. It's not, it's not embarrassing when when you need to advocate for your health for yourself. Yeah, it's unit's unfortunate that we have to even label ourselves that way when we're trying to advocate for our health.

SPEAKER_01 35:28

You have to to become a super carried to get the help you need. Is that kind of unfair? Because I'm nice, I tried to be nice, but oh my god, I was a monster. I was feeling bad for for the poor soul that had that that had an appointment with me. Like, oh my god.

SPEAKER_02 35:48

Yeah, I have one of those unfortunate personalities where I worry about getting on people's nerves. 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. And my husband's always like, Can you just call and ask, please?

SPEAKER_01 36:05

Yes, it's like um, I think I developed like a another person, a different personality, like a split personality or something like that. Because it's like, uh, I I need I need you to do your job. Like now I'm paying for this. So these are the symptoms. Have a seat and let's have a conversation. Take the time I need, answer my questions.

SPEAKER_02 36:31

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.

SPEAKER_01 36:45

I feel it's the only thing I can do right now.

SPEAKER_02 36:49

It gives you a sense of purpose, right? And it kind of gives meaning, gives meaning to the accident, the suffering, the experience.

SPEAKER_01 36:57

Yeah, yeah, yeah. 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.

SPEAKER_02 37:07

Yeah, you are, you already are doing something positive. Thank you. Well, I just want to say thank you again for being on this episode of Bed Back and Beyond.

Share Your Recovery Story

SPEAKER_02 37:20

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. Sophia, this is going to be a big help. Uh I hope people that are being gaslit or misdiagnosed see this and really reach out and get the help that they need.

SPEAKER_01 37:42

Thank you again. Thanks for inviting me. And I hope this helps someone out there that is suffering right now. I hope. Absolutely.