Chiari Online Support Group

Help symptoms progressing and no surgery lined up

Hi, I was diagnosed in May 2015 with Chiari Malformation Type 1.m with 12 mom herniation. I was finally diagnosed after waking up with morning headaches every morning. My symptoms have only really been morning headaches and headaches in the day. However, March this year things have started to take a turn for the worse. I have been experiencing numbness in my right leg, then my left arm, left leg and right arm. Also nerve across my body and neck pain. I have been have light sensory and vision onesies in my left eye and this week developing trunks dealing and feeling like there is a ‘lump’ stuck in my throat with hoarseness and sore throat. I am so scared as I can see these symptoms developing and do not know if they will get worse or stay the same. I do not want surgery as I know that it can make things worse or help for a little while only. I am so scared and feel like I am not myself anymore. The nerve pain is horrible and now my vision and throat I feel like my health is deteriorating. Some days are better that others but I am constantly in pain. I am under neurology and a neurosurgeon but since I have last saw them my symptons have progressed . I have recently had a scan of the cervical spine of the neck which showed no syrinx.I am taking Gabapentin for the nerve pain and a ppi for the throat. But the Gabapentin I feel is making my thirst even sore and dry which is adding to it all. Please can anyone else let me know there symptoms and if they are managing them with pain relief, are they able to work? Have their symptoms progressed quickly (mine has been over 5 months this year). Thank you