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Chiari Malformation & Syringomyelia
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Muy bien explicado!
Thankyou for sharing it was very helpful. I wasn't born with mine only in the past few months I got a diagnosis of Chiari. Strangely I hear about Syringomyelia alot but I was diagnosed with something called Hydromyelia. Researching they seem really similar but there isn't much info on Hydromyelia.
Thank You!! You Helped me understand this better!!! :) Hope u are well :)
Very good mem video
PS type2 I wasn't born with mine. please update
It can still happen as a birthdefect
Hello my Father cyari malfunction problem help us
thank you. I have type 2 malformation and syringomyelia from c2 to T8 or T9. last scan was 6 years ago
Steve Bee how are you now
I have just had revisional surgery to fit a shunt into the syrinx I as mine was still growing and. had affected all the nerves between it and my feet including my bowel and bladder my sexual function my core muscles my tail bone wiped out and I was heading towards completely losing the use of my legs I walked like I was drunk . I also lost the ability to swallow to speak cohearantly the right side of my face was so numb Iand the pressure was so bad I would grind my teeth and didn't know I was doing it it got so bad I was hallucinating and having narcoleptic episodes , I thought I was either going mad or dying . After two surgeries I am now coming back to life f got my swallow back first wow . Then it literally felt like my head had been deflated the relief of that was immense day by day my face came back to life I could talk I could think straight I could breath and stay awake it's amazing don't get me wrong I have a long way to go and I don't know if everything will come back I have numb feet and knees but my bowel and bladder are returning and my core muscles are stronger yet to discover sexual function lol can't wait for that one .l am 52 now and have suffered with this on and off since my teens but things really kicked off about 4 years ago so it's been. really tough for my family and t I have only just scratched the surface having auditory hallucinations didn't sleep for 8 days after the op for more than 2 hrs night but I still feel a million and more times better than before but something new everyday 😉🙂
It ins't necessarily congenital. I have it after a fall. I'm 65. I now have an appointment for surgery in Nov.
Though I am not typical, enough to be a danger during everyday life.
how is your surgery and how do u feel now ?
Sometimes we are born with it and remain completely symptom-free our entire lives until an accident.
@@6teezkid I was diagnosed in my early 30s which explained the " migraines' that I have suffered since I was a toddler . I had no other symptoms until a car accident several years ago . Since then I have so many neurological symptoms I'm way past over it . I have a new appreciation for the array of functions of our nervous system , now that I have random glitches in mine .
Hi, how's the result? i hope you allright
@@simodalcais did you get surgery?
Apologies for really poor grammar punctuation spelling I just read it back and laughing at myself never mind I am alive and living again xxxx
surgeon won't operate on mine either and I have all the symptoms
Krystal, I'm sorry you are having such a rough time with symptoms as well. Where do you live? Most people with Chiari end up traveling long distances in order to get the proper care from a handful of *true* Chiari experts. Neurosurgeons are specialists, but there is a HUGE difference between being an expert neurosurgeon operating on the lumbar spine (lower back) as opposed to an expert neurosurgeon operating on congenital malformations of the brain. If you are interested in more info about finding a true Chiari expert, you can visit the Chiari and Syringomyelia Foundation's website that is in the info box of the video.
AutismMumNZ AMNZ why doesnt he operate you? What is the reason that he/she doesnt want
Chronic Christy are you there
I hve chiari im frm philpnes.. i hope u cn help me i need surgery too im single mom w 2kids😞😞
@@ChronicChristy I'm from New Zealand.
I had surgery in 2005 cranovertibal decompression and in 2013 revisional craniovertibal decpression as cerebrallum grew back I was ok for a while n still having regular lumbar punctures. I'm awaiting further options with neuro next week. Surgery is not to be taken lightly the first one was really bad and the second one was even worse but did give my some normality. I was diagnosed in 2004 and sympathise with anyone with this illness. Thanks for this video upload I was able to shed it to ppl who don't understand.
so what's the best solution for young people?
I'm so afraid I have this. I also have pots syndrome
Hey there Neo! I am sorry you have POTS. I have POTS, Chiari, Ehlers-Danlos Syndrome, among other things. what makes you think you may have Chiari? if there is any way I can help, please let me know!!!
+Chronic Christy I need someone too talk myself I was born with syrinx idk about the other yet ive only had a mri done on my back but I do have really bad headaches, neck pain, pressure all in my head an neck
Chronic Christy are you there