New member. C1-T2 Syringomyelia
 

Hi,

My names Josh, I'm 30 and live in Australia. I have a very complex syrinx from my T2-C1 level which I have had since birth but only started developing neurological complications around the age of 16. It was start one my left side with foot drop, and over the course of the next 14 years my left leg gradually got heavier, I began to trip a lot, so I started using a walking stick, my right leg then became heavier I then progressed to a frame and have been in a wheelchair fulltime for approx 4 years now. I cannot feel hot/cold apart from the top of my head and on my right hand. During the last 18 months I feel like my symptoms have excelerated and I have become increasingly paranoid that there may be some underlying motor neuron condition. I experience body wide muscle twitches and spasms. My Syringomyelia can explain all this yet I also get them all over my face, and have developed atrophy on both sides of my face, have a numb sensation on my forehead and twitching of the tongue. When the symptoms started on the left side of my face it felt like a bee had stung me in the centre of my cheek. it was not long after that I began to notice the atrophy and feel more and more of the spasm's/twitching all over my face. I've read that numbness and pain are not symptoms of ALS, so I am hoping that's not the case. I can move my tongue side to side pretty fast, and this may sound weird but being in a chair I have to do this a bit, I can carry a large bottle of water in my mouth for a fair distance by grasping it with my teeth. So my jaw is still fairly strong. However the muscles in my face are wasting and getting weaker and look thin. Has anyone experienced or heard of this happening in cases of extreme Syringomyelia?. Sorry for the long rambling post, I'm a young guy whose been going through this crap for a long time. I'm just over it, and the Drs not knowing, so it would be great to get some answers. Thanks.

Welcome Josh_DownUnder. :Tip-Hat:

Hi Josh,

Sorry you are having to deal with this rare disorder. When did you last have a CT Scan? I found this on patient.co.uk - a quite technical site written by Doctors:

Syringobulbia
This occurs if the syrinx extends into the medulla of the brainstem. The cranial nerves become affected:
Facial sensory loss can occur as the trigeminal nerve becomes involved.
Vestibulocochlear nerve involvement causes vertigo and nystagmus.
Facial, palatal and laryngeal nerve palsy can occur as the VIIth, IXth, Xth and XIth cranial nerves become involved.
Weakness and atrophy of the tongue is caused by XIIth nerve involvement.
Quote.

Could your syrinx have extended to this extent?

Feeling for you.

Dave.

Hello Josh,
Welcome to the NeuroTalk Support Groups. :)

Just leaving a link for you below
Arnold Chiari Malformation & Syringomyelia Forum

Great to meet you!!