4rth Neuroenteric Intradural cervical spine c-4 to c-6

[Carrie]

At age 29- in 2003 first neuroenteric cyst diagnosed severe pain, motor function, loss of bladder and bowel control, numbness and tingling in all extremities, leg and arm weakness, headaches, nausea, tinnitus, partial paralysis. Posterior surgical approach and lamenectomy. Stanford Hospital, CA

2008- recurrence of same tumor- same worse song symptoms.
Posterior surgical approach and lamenectomy. Recovery in Rehab facility 1 month. Kaiser Permanente Neurosurgery Redwood City, CA

2013- recurrence of same tumor grown back- surgery that caused spinal cord damage, rods screws and plates fused from c-2 to T-1 partial paralysis, neurogenic bladder, parastheis through out body. Physical Rehab 3 months. Permanent damage diagnosed and symptoms treated. Kaiser Permanente Redwood City, CA surgery Rehab- Vallejo, CA

2020- recurrence- more invasive aggressive- Neuro function declining fast.
Now officially a very difficult case. I am now 47 and looking at the possibility of total paralysis from the chest down. My spinal cord has been manipulated and damaged.... doctors and experts talking about anterior approach-

Anyone have some advice as I am just angry with this disease and angry that my life has been robbed and my life interrupted for the past 17 years. There is no prevention, no cure, it just slowly robbs me of all of my plans and my future dreams and aspirations. Any words of advice from you folks would be great as it I hard to find people who understand the pain both physical and mental that these rare diagnosis come with.
Look forward to hearing from someone soon. Surgery set for 2/2021

[cargette]

Hi Carrie,

I'm so sorry to hear what you've been going through. I'll just pray that your surgery next year will be a successfull one. It's hard I'm sure, but please find comfort in your family and friends.

[mettledmillie]

@carrie Please hang in there, man. I wish you a successful surgery and a longer life.

[lexbrave]

Hi new here, is this forum dead already?

[cargette]

It seems so, yes.