Olivier: Good evening. What's your name?
Laura: Laura
Olivier: And how old are you?
Laura: I am 35 years old, and I live in Normandy.
Olivier: Oh, you're in Normandy. Okay.
Laura: Yes.
Olivier: What would you like to discuss, Laura?
Laura: I'd like to talk about Empty Nose Syndrome.
Olivier: What?
Laura: Empty Nose Syndrome!
Olivier: This is the first time I've heard about this
syndrome. I hope you'll forgive me. What exactly is Empty Nose Syndrome [ENS]?
Laura: It's my little brother who experienced this
syndrome like many others in France and around the world. It's a condition that
occurs after any nasal operation, whether it's a turbinate reduction, or people
who are having their nose done again, or people who are having…… Oh, I'm sorry,
I'm losing my words.
Olivier: Take your time, Laura. We have all the time
in the world. I know it's one of the first times you're speaking about this, so
we have plenty of time.
Laura: So essentially, it's related to all the basic
nasal problems. It can be a blocked nose, it can be for people who need
revision surgery, so anything related to reconstruction, revision, etc.
Olivier: Okay.
Laura: And then there are surgeries that ENT specialists
propose.
Olivier: Okay.
Laura: So either initially treated with radiofrequency
or other techniques. And in fact, these techniques result in ENS in about 20
percent of cases. There are approximately 1,800 cases (in France).
Olivier: Okay, so let's talk about your little
brother.
Laura: As you mentioned, Charlie's health issues
started around 13 years ago, to be precise. At that time, Charlie was 17 years
old. He was passionate about sports, all kinds of sports; he was a big sports
enthusiast. When he decided to try boxing, he took a bad hit, a blow to his
nose, and from that day on, he felt his nose was blocked.So these things often happen in boxing because we
constantly take punches. Even if, I suppose, we have protective helmets; this
injury is part of the risks.
Olivier: Did he take a big hit to the nose that
day?
Laura: Well, I was there that day, and it didn't seem
like a big blow to me. I think Charlie had a fragile nose, I don't believe all
boxers have nasal congestion from these punches. At least, not to my knowledge.
So maybe he already had a fragility in that area, and it wasn't the place he
was supposed to be hit at.
Olivier: He might have had a frailty, you're right.
But anyway, did he ever complain about his nose before?
Laura: No, not before that.
Olivier: Okay. What were the consequences of [this
injury to] the nose?
Laura: Well, Charly ends up with his nose blocked. As
soon as the first night, you noticed that his nose was completely blocked when
he was lying down.
There you go, that's it. It handicapped him during the
day because, as a result, he couldn't sleep properly anymore; he was constantly
tired. It was as if, as my little brother would say, he had a cold all year
round. Yes, he woke up with a dry or pasty mouth, and then he was awakened
several times during the night with a blocked nose, just like when we have a
bad cold or something similar. But then, actually, it lasted for days and days,
evidently. Well, it lasted for years. His nose didn't recover.
Olivier: Years, okay. What did Charly do during these
years? Did he go to see doctors anyway?
Laura: Well, I guess he was 17 at the time. During
those years, he found work; he worked!
Olivier: What did he do during these years?
Laura: Charlie? Well, he tried to live with it by
saying that his nose was blocked. He tried a first nose operation, but it only
straightened the edge of his nose. One day, my little brother told me that his
nasal septum was like an accordion. Everything was destroyed.
Olivier: So, did he see a specialist at the time?
Laura: Yes.
Olivier: A real specialist?
Laura: Well, an ENT operated on him but didn't
straighten the right spot.
Olivier: Okay, but was it because he didn't find the
deviation, or do you think he made a mistake?
Laura: Well, I don't know. In any case, he didn't
straighten the nose at the right spot, and it didn't change anything for
Charlie at all.
Olivier: Okay, so the first intervention was to
straighten a deviated septum, and this intervention didn't achieve anything.
Laura: That's it, and we know by now that a crooked
nose really can obstruct breathing.
Olivier: Yes, yes, yes.
Laura: Okay. Breathing is something we do every moment.
It’s one of the most important [basic] things, so living with a blocked nose is
practically hell, you know.
Olivier: Yes, yes, yes. During all these years, I
suppose he accumulated stress from it? Did it impact his temperament? Did you
notice any changes in him?
Laura: Not particularly. Charlie was kind to others,
always in a good mood, ready to party. He was very, very happy, but sometimes
we could see that he was tired nonetheless, and he had a job in the morning and
one in the afternoon, so he had to rest a lot anyway.
Olivier: But otherwise?
Laura: No, his morale didn't seem affected; he was
always pleasant.
Olivier: So, it didn't impact his temperament in front
of you! What did Charlie do in life during this period? What did he do for a
living?
Laura: Charlie worked in a logistics store.
Olivier: Okay.
Laura: He was an order picker.
Olivier: Okay. So he worked in the retail sector I
suppose?
Laura: Yes. He worked in a large retail store.
Olivier: Okay. I think he also took care of... he has
two little daughters, right?
Laura: Yes, two princesses.
Olivier: Okay, so he met a young woman at some point.
Laura: Yes, he became a father very early, at the age
of 18 and he had these two princesses. Well, he separated with his spouse, but
always ensured he performed his role as a father very well.
So, there it is. The pale complexion, the dark circles
under his eyes, the constant fatigue. In fact, he always felt like he never
fully recovered, never got back in shape. And yet, he never showed it. He had
enormous strength. And yet, Charlie was quite active. He did a lot of sports,
ate balanced meals, and maintained perfect hygiene, you know.
Olivier: Yes, he was a very healthy young man.
Laura: Yes, yes, his lifestyle hygiene, honestly, he
was good. He partied like all young people, but he was still cautious. He was
very careful about everything. Even though he partied, he was still
responsible. He also experienced nocturnal awakenings. It was complicated. I
also noticed that he had bleeding gums, and his teeth were falling apart.
Olivier: Was it related to his damaged nose?
Laura: Well, according to the doctors, no, but Charlie
thought otherwise.
Olivier: Hmm…. So, I think he tried everything to
breathe through his nose. He tried a bunch of things, didn't he?
Laura: Yes, there was one time in 2022 when a spray
worked for a night. He felt like he recovered a lot, but it was short-lived.
Just one night. In 2022, he decided to make an appointment with an ENT
specialist in [Le] Havre. This doctor confirmed his nasal deviation. He
explained that it's difficult to correct a deviated septum with surgery. He
suggested a different solution: radiofrequency treatment. It's a 15-minute
operation aimed at reducing nasal obstruction. He saw this doctor without a
prior consultation, just based on a colleague's recommendation.
Olivier: He arrived on the day of the operation
without any prior interaction with the doctor? Without any pre-consultation or
anything?
Laura: Yes, without any preparation!
Olivier: Hmm… So…. The operation lasted 15 minutes to
reduce the obstruction and Charlie thought he could return to work the next day
without any issues?
Laura: Yes, that's right. This operation aims to
reduce the thickness of the mucous membrane. If not done carefully, it can
cause irreversible damage.
Olivier: So, what was the procedure like?
Laura: Charlie asked the doctor if he had to remove a
lot of tissue. The doctor said no, he would only treat the inner part of the
mucous membrane to ensure proper airflow without causing damage. So, Charlie
left after the operation. He had a bleeding nose, but it wasn't dramatic.
That's all for now. And then, a week later, Charlie didn't notice any
improvement from the operation.
It took about a month for him to feel the benefits.
But then, Charlie began experiencing severe heart pain, palpitations, and
sensations like his heart was going to stop. At the time, he didn't connect
it to the operation.... So, he tried using a humidifier afterward, which helped
with the dryness in his nose. But by the beginning of January, things took a
turn for the worse. And there was absolutely nothing else that had happened,
that could explain all these sensations he was experiencing.
Olivier: Hmm….
Laura: Charlie had learned a lot about nasal issues
and had read testimonies about victims of Empty Nose Syndrome. So, in January
2023, the complications intensified. His condition worsened, and he complained
of having too much air passage, which caused swelling in his nose.
Olivier: What does that mean? That his nose ended up
being completely blocked?
Laura: Well, the air goes directly into his throat.
There's no more mucous membrane, it's probably been reduced too much. And now,
there's no protection…. When our noses function properly, there's a filter that
prevents…. I don't know what it's called... but it prevents air from rushing
into our lungs. So, now air rushes completely in. When we saw the doctor from
Paris, he explained to us that it's like living while holding our breath.
Olivier: Oh, okay.
Laura: Constantly feeling like living while holding
our breath.
Olivier: So, this sensation of an empty void space in
the nose, is it the result of having too much air flow in the nose?
Laura: Yes, exactly... It's a sensation that feels
suffocating. Suddenly, there's an influx of air, and it's overwhelming.
There's nothing to regulate it. So, it leads to other symptoms because the body
becomes exhausted when something isn't functioning properly.
Olivier: Hmm…. And what were the consequences for him?
Laura: Again, he experiences nocturnal awakenings where
he feels suffocated. Superficial sleep where it seems like he's dreaming
all night. He experiences an increased heart rate, memory loss, difficulty
concentrating, heart palpitations, constant headaches, and digestive issues….
And, in fact, it's more than just words on paper. We witnessed my little
brother completely deteriorate.
Olivier: So, he expressed to you that it's an inexplicable
sensation... He wrote something for you, or he told you something to
remember, all those quotes you sent to my colleague?
Laura: Yes, yes, yes.
Olivier: What did he write? Was it like a personal
journal?
Laura: No, he left us a 7-page report on this illness
because Charlie doesn't want anyone else to experience it.
Olivier: Okay, okay. So, in these 7 pages, he
described it as an indescribable sensation for those who haven't experienced
it, the feeling of being constantly trapped in a dream that never ends,
a nightmare even.
Laura: Yes. A living hell, as they say.
Olivier: Your mother mentioned that Charlie told her
he had a pounding heart. Very intense. What caused it? Was it the fear
of suffocating from the excess air?
Laura: This suffocation triggered this empty
nose syndrome, precisely… Well, actually, I don't think we can even comprehend
it ourselves. Unless we've experienced something like that yourself, I think
it's inexplicable. And I think about all those people who suffer from
it….
Olivier: Well, it's truly awful.
Laura: My life feels reduced now also due to my loss.
Olivier: Did he ever think of blocking his nose
occasionally with a plug when he had too much air? Did he try that?
Laura: Yes, he tried nasal vents, he tried cotton, wet
cotton placed in the back of the nose, but it didn't work. We even consulted a
doctor specialized in this [empty nose] syndrome in Paris, who then discovered
that Charlie had 50 percent of his nasal septum destroyed.
He offered three solutions. The first was vitamin
supplements in hopes of natural remedy, but Charlie had already tried it
without success. The second was a PRP injection, where blood is drawn,
separated, and then reinjected to give volume to the septum.
And the third was bone graft implants to reconstruct
the septum.
So, Charlie opted for the PRP solution, which
unfortunately didn't work.
Olivier: Okay. So it was unsuccessful again.
Laura: Then he returned to the ENT who performed the
surgery, who dismissed the idea of Empty Nose Syndrome [ENS], claiming his
nasal lining had healed perfectly. He saw no issue with it. No regrets,
no...
Olivier: Okay. Did he know about this ENS mentioned by
the other ENT?
Laura: We discussed it during the doctor's visit, so
Yes. And I don't know, we can't really do much because Charlie had his surgery
on December 6th, 2022, and HRS's law came out on December 15th, 2022, just 9
days later.
Olivier: The HRS law, what is that?
Laura: It's the Haute Autorité de Santé. They didn't
ban this type of operation, but they said it needed to be monitored more
closely.
Ah yes, they needed to monitor this operation more closely.
There were increasing problems with the syndrome. I believe the cases almost
reached 20 percent. So it's significant.
Olivier: Mm hmm. Nowadays, that seems substantial. So
it's best to avoid this type of operation when it's not fully mastered.
When I listen to you, it seems better to avoid this
type of operation, considering the consequences it had on your brother, which
were dramatic… The ENT who operated on your brother finally admitted on October
17, 2023, that your brother had Empty Nose Syndrome!?
Laura: Yes. Yes, with the report from the doctor we
saw in Paris.
Olivier: Okay…. So, he recommended Charly to see a
psychologist.
Laura: Yes, because that’s the current solution. They
make you sick and then suggest you see a psychologist and take antidepressants,
it doesn’t work.
Olivier: Mm hmm…. From your perspective, this Empty
Nose Syndrome (ENS), which obviously affects sleep and causes fatigue...
Can it create a psychological imbalance or at least anxieties that can amplify
the feelings your brother had?
Laura: As my brother said, it was the illness that
made him anxious. It wasn’t him. My brother had never been sick or anything. He
wasn’t like that at all. And I think that if you take away a person's sleep,
their ability to breathe properly, and everything that makes them function
normally, it will eventually break them down.
Olivier: Oh yes, I struggle to fully grasp this
condition but the effect of it must be terrible. It clearly had a severe impact
on your brother’s health and morale. So much so that two and a half months
later, in January 2024, he……
Laura: Yes. In the last lines of his story, he calls
for a ban on nasal surgeries except in cases of extreme necessity like cancer.
It’s a tragic decision that Charlie made, but we could feel that he couldn’t
take it anymore.
Olivier: I’m sorry... Thank you. Sandrine, along with
your sisters Laura and Mélanie, you decided to take up the case with your
brother and raise public awareness about this [empty nose] syndrome and the
risks of turbinoplasties... You want Charlie's story to reach as many people as
possible and to prohibit this surgical operation [surgical procedure]. In any
case, to warn people about this surgical operation, I think it’s incredible
what you’ve been through.
You didn’t expect it at all. You didn’t see it coming?
You didn’t feel that it was over for Charlie?
Laura: Yes, we felt it but we always hoped it would
work. And that it would get better... It's hard when you see people who are
dear to you slowly destroying themselves. He had lost his taste for everything.
He didn't want to see anyone anymore. He shut himself in and stopped working.
Olivier: Ah, he had stopped working, okay.
Laura: Yes. And actually, just before. He had an
appointment with security who asked him to resume work, but Charlie could not
resume work, and that was it.
Olivier: Do you think Charlie started out well and
then fell into a serious depression?
Laura: Psychologically, no. But physically, he
couldn't continue; his body couldn't take it anymore.
Olivier: Okay... Your mom supported him a lot, I
think…. Did he ever share with her his desire to end everything, to end his
life?
Laura: Well, there were some things to read between
the lines, but not clearly said... Once, he told me, “if I continue like this,
it's not possible for me”. It's obviously very unpleasant to hear... You know
what, I’m currently shooting a film about his suicide, and I’m personally very
concerned about this issue.
Olivier: Okay. And it’s true that we never believe. We
never believe that the beings we love and who love us can finally make this
gesture. It's undoubtedly in a state of total despair... Did you feel that he
was desperate? at the end?
Laura: Yes... He held on, I think, for a very long
time… I have suffered a lot as a mother, for my daughters, and for myself. I
have suffered too much.
Olivier: Yes, yes. It's crazy that no doctor, in a
time where there are so many advancements, could help him by installing
something in his nose that could reduce this [empty nose] syndrome a little
bit.
Have you found out if there are people who get treated
for Empty Nose Syndrome [ENS]?
Laura: Yes, but unfortunately, in France…. well, even
in the whole world, it's experimental treatments. Some are trying fat
injections; there are several trials… I am speaking with a group on Facebook,
and I have spoken directly with a few people. I have the impression that, in
fact, healing is almost impossible. And that’s why they have to stop that.
People have to pay attention to their ENT specialists and what they offer as a
solution. Things like that shouldn’t happen again.
A turbinate reduction with coblation or radiofrequency
lasts only 15 minutes, from those 15 minutes, so much damage occurs. We can
imagine how powerful the tools used must be to reduce the mucous membrane to
nothing. It’s visibly destroying it
Olivier: Well, of course, it destroyed 50%.
Laura: Oh, yes. Oh, yes.
Olivier: How old was he exactly?
Laura: He was thirty-one.
Olivier: You have created an association, right?
Laura: As of now, no… it’s been five months
since Charlie’s gone… In fact, our goal is rather to raise awareness right now,
so that people are as aware and don’t go through it. And to make people pay
attention to what they’re doing. And to make ENT specialists be confident and
be sure of the procedures they want to perform. That’s mostly what we want,
that people protect themselves.
Olivier: Yes, yes. You who are listening to us, if you
have ENT problems related to the nose or ears. I hope you have heard and
analyzed Laura’s testimony and Charlie’s tragic misadventure because it all
started with a punch to the nose, taken in a boxing match. It's crazy. It's
crazy.
Laura: Yes. And so, no doubt, this punch caused a blow
to the nose.
Olivier: I hope you eventually find ease in what
happened. Thank you very much for your testimony tonight on Europe 1, Laura.
Maybe you’re going to create an Instagram page, or something, at least as support,
because, as you say, I understand that all of this is still very, very tough.
Laura: The pain is still very intense.
Olivier: And this is normal, because Charlie left you
just 5 months ago. You’ll need support from your sisters and parents from time
to time. But I really wish from the bottom of my heart that you all manage to
get through it, and that you can fight for Charlie as he deserves it. Thank you for your testimony tonight on Europe 1,
Laura, and good luck to you.
Laura: Thank you, it's me who should be thanking you
for the help you are giving us..
Olivier: You’re welcome. Thank you very much. Good
evening. Goodbye.
Laura: Goodbye.
Bellow is the same text to print or download, click at the right bottom corner
