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18-YEAR-OLD Emily discovered just a few years ago that her brain is falling out the back of her skull. At the age of seven she suffered her first headaches, particularly when bouncing on the trampoline in her back garden. By 14, these headaches were so severe that she spent days on end in bed. After a year of almost constant pain, three separate trips to hospital and an unsuccessful decompression surgery on her brain, Emily's dad Michael had had enough of seeing his daughter suffering. After insisting that doctors scan Emily's brain, it was found she had Chiari Malformation type 1 - a rare condition that causes the brain to herniate down the spinal column at the back of Emily's skull. Suddenly, the family "had answers" - but Emily continued to experience the same symptoms and spend extended periods of time laying in bed, as this was the only way she had found to ease the pain. She had to give up playing netball, rarely left the house and has been unable to go to university or start work. As if Emily's situation wasn't difficult enough, she told Truly how she has "lost friends" who thought she was faking the condition. Emily was desperately waiting on a miracle - when she heard about a "pioneering new surgery" after a recent medical breakthrough. Doctors now think that Chiari Malformation is caused by a fibrous cord-like structure within the spinal cord called the filum, which appears to be too tight in people with the condition. A team in Barcelona now offers a surgery to cut the filum, releasing the tugging on the brain and alleviating symptoms almost instantly. But with the surgery being so new and costing £30,000, will Emily choose to go ahead with it? And if she does, will it give her the "new chance at life" she so desperately needs?
18-YEAR-OLD Emily discovered just a few years ago that her brain is falling out the back of her skull. At the age of seven she suffered her first headaches, particularly when bouncing on the trampoline in her back garden. By 14, these headaches were so severe that she spent days on end in bed. After a year of almost constant pain, three separate trips to hospital and an unsuccessful decompression surgery on her brain, Emily's dad Michael had had enough of seeing his daughter suffering. After insisting that doctors scan Emily's brain, it was found she had Chiari Malformation type 1 - a rare condition that causes the brain to herniate down the spinal column at the back of Emily's skull. Suddenly, the family "had answers" - but Emily continued to experience the same symptoms and spend extended periods of time laying in bed, as this was the only way she had found to ease the pain. She had to give up playing netball, rarely left the house and has been unable to go to university or start work. As if Emily's situation wasn't difficult enough, she told Truly how she has "lost friends" who thought she was faking the condition. Emily was desperately waiting on a miracle - when she heard about a "pioneering new surgery" after a recent medical breakthrough. Doctors now think that Chiari Malformation is caused by a fibrous cord-like structure within the spinal cord called the filum, which appears to be too tight in people with the condition. A team in Barcelona now offers a surgery to cut the filum, releasing the tugging on the brain and alleviating symptoms almost instantly. But with the surgery being so new and costing £30,000, will Emily choose to go ahead with it? And if she does, will it give her the "new chance at life" she so desperately needs?
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00:00My rare condition caused my brain to fall out the back of my skull.
00:03My brain went all the way down.
00:05It takes me hours to get out of bed every day because of the pain.
00:08Other days I can't get out at all.
00:10Hi!
00:11I have unfortunately lost quite a few friends.
00:14People have accused me of faking the condition,
00:16but I've got the scar to prove it's real.
00:18Surgeons performed decompression surgery,
00:20but it didn't help for long until the symptoms came back.
00:23It's all slipped back down,
00:24and there's barely any fluids around like rain again.
00:27I'm waiting on a pioneering new surgery
00:30to prevent my brain from slipping any further down.
00:33Hopefully it will give me a new chance at life.
00:38Morning!
00:39You okay?
00:41Yeah, I think so.
00:45How are you feeling?
00:46Sore, but I'm all right.
00:47Chiari malformation is a brain condition.
00:50My cerebellum, which is the back part of my brain,
00:53is slowly slipping down into my spinal canal
00:59through the opening in the base of the skull.
01:01I eat my breakfast lying down
01:04because I'm in so much pain in the mornings that I can't sit up.
01:07I slowly have to bring myself up on the bed,
01:10so I have to eat like this, but it can get quite uncomfortable.
01:13A really bad day, I will not get up whatsoever.
01:18I'll be laid down the entire day.
01:20It mainly hurts at the back of my head,
01:23but my entire body usually hurts.
01:26Every day you walk through the door,
01:28and it's just emotional.
01:34Sorry.
01:37You walk through with anticipation that it's going to be a good day.
01:41Talk to her two minutes, and you know it's not going to be like that.
01:45It's not going to be a day like that.
01:47The headache started when I was seven.
01:49I didn't think anything of them as they were barely anything.
01:53I was skiing when I was 14,
01:54and I felt really poorly that skiing holiday.
01:57Yeah, you did, didn't you?
01:58We didn't really notice much signs, did we, when you were young?
02:02When I was 14, the pain became consistent.
02:05I just felt more and more pain in the back of my head,
02:07my neck, my shoulders, down my spine.
02:10I was getting weird tingling sensations in my arms and legs.
02:14She went from being a kid that does everything,
02:17skis, runs, loved dancing to lying in bed 90% of the day.
02:23It was quite shocking.
02:24We took her to A&E three times,
02:26and on the third time, Emily was just in so much pain.
02:30They didn't know what to do to help her.
02:32I was finally diagnosed in October 2021 when I was 15 after an MRI scan,
02:38which me and my dad had to fight for.
02:41They kept saying to me,
02:42come back when it's worse,
02:44and my dad just said, it can't get any worse.
02:46She's bedbound, she can't do anything.
02:49He wouldn't leave until they looked into it more.
02:52It was a big relief when we got diagnosed,
02:54because we knew, didn't we?
02:57We had something, the reason why she was getting all these headaches,
03:00and we had all these question marks before.
03:03At first, I didn't understand the scans very well.
03:06When I did start to understand, I noticed how severe the Chiari was.
03:09I did realize that my brain was herniating quite a lot.
03:13This was my first ever MRI, and my brain went all the way down.
03:19And you can see the white bit around my brain, it's grey,
03:22there's like barely any of it.
03:24But then on this, after the decompression, how much more of that there is.
03:30Comparison is amazing, isn't it?
03:32I had decompression brain and spinal surgery three months after being diagnosed.
03:36They remove a bit of my skull, a bit of my spine,
03:40remove a bit of my herniating brain,
03:43and replace the brain lining with a skin graft from inside my head to expand it.
03:48It allowed fluid to flow around my brain, relieving the pain in my head,
03:52my neck pain, my back pain.
03:54However, a lot of that has come back since.
03:57My more recent one here, it's all slipped back down,
04:00and there's barely any fluid around my brain again.
04:03This is my brain stem, I believe that goes down into the philum.
04:06And that's the bit they're going to cut?
04:09They're going to cut, yeah.
04:10I'm hoping to have the philum terminal sectioning surgery in three or four weeks' time.
04:15I have to go to Barcelona for this surgery as it's not done in England,
04:20and not performed under the NHS.
04:22I am having to pay a lot out of my savings,
04:25which is quite upsetting as those could be used for my future.
04:29But I'm happy to spend them on this as hopefully this will give me my future.
04:34I play a lot of netball a week.
04:35I would do training two times a week, sometimes three.
04:39When I was 17, roughly a year after my surgery,
04:43I just couldn't handle the symptoms that were coming back anymore, so I have to stop.
04:48I'm hopeful about the surgery.
04:50Hopefully it will give me a new chance at life.
04:52I'm more nervous of the fact if it doesn't work and if it doesn't help me,
04:57as it seems to be my last chance to actually help the condition.
05:01Hiya, how are you?
05:03I'm good, how are you doing, Emily?
05:05How are you feeling? Are you getting any worse or how are your symptoms?
05:09I'm struggling at the moment. It has been a lot worse the past few weeks.
05:13I first met Margot on a Facebook group where people talk about their Chiari
05:19and people who have had the film surgery or are hoping to get the film surgery talk on there.
05:25And she is a big advocate for the film surgery.
05:27So they go in and they make a one-inch incision at the base of your spine
05:32and they clip the ligament and it releases the tension on the spine.
05:36Many people get their neurological symptoms reduced.
05:40In my daughter Caroline, hers was like a tight rubber band.
05:43We had to get her handicapped pass because she could barely walk.
05:46And four days after surgery, she was walking up a flight of stairs,
05:50not even holding on to the handrail.
05:51My other daughter's headaches were gone.
05:53She also had swallowing issues where she felt like she had something stuck in her throat.
05:59That sensation was completely gone.
06:01Very miraculous for my kids.
06:03That is incredible. Gives me a lot of hope here in that.
06:06Think of a positive outcome. Think of my kids.
06:09And hopefully that will be the case for you as well.
06:11Yeah.
06:12And you're definitely in good hands.
06:14Thank you so much for talking to me about this.
06:17I wish you the best of luck. Please keep me posted.
06:19Will do. Thank you.
06:20Okay.
06:21Bye.
06:21Bye-bye.
06:23Hello.
06:24Hi.
06:24How are you?
06:25I'm good. How are you?
06:26I'm good.
06:28When Em's having a bad day and I'm coming over,
06:31normally she'll be up here. I'll just walk in her house.
06:35I'll come upstairs and I'll just sit here with her.
06:37It's just really nice to know that we can do that.
06:40Over time, I have unfortunately lost quite a few friends.
06:43People have accused me of faking the condition.
06:46A lot of my friends unfortunately didn't believe me.
06:49I know that my condition's real. I know that I struggle with it.
06:52And I don't blame those who do think that,
06:55as they don't experience it, so they don't know.
06:57But I just hope through me spreading the awareness
07:00that more people understand and are not as naive about chronic illness.
07:04I decided to make a TikTok account about my condition and try and spread awareness.
07:09I've had many good reactions, positive reactions,
07:13and a lot of people come back to me telling me that I've helped them,
07:16which is crazy. That's an amazing feeling. That's what I want.
07:19Bringing the Chiari situation to the forefront to as many people's lives as she can
07:25is going great, so I'm super proud in that sense, super proud.
07:27I just want Emily to get back to normal, be able to do the fun things,
07:32be a typical 18-year-old instead of laid down all the time.
07:36Yeah, good to see having fun again.
07:39I do hope that me talking about the illness and my struggles
07:44helps other people talk about those and also just understand more and know they're not alone.
07:54I'm now four days post-surgery and I thought I'd give a little bit of an update.
07:58I woke up after the surgery and I had immediate relief.
08:01I didn't have any pain in my head.
08:03Previously, I couldn't sneeze or cough without being in absolute agony.
08:07I have sneezed and coughed since the surgery
08:09and with little to no pain in my head, which is absolutely crazy.