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.
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