Archive | October, 2017

Update: MRI Results, C-Spine Stenosis Surgery Needed 

17 Oct

MRI Results

Sorry I haven’t been active for a while. I lost a couple relatives since my last post, been sicker, and things have been hectic. We had the California fires breaking out and took in some family as fires broke out near us but we are all safe. My fevers have been higher, I’ve been very tired and things have been worse than my normal worse. Let me just say this MRI was very painful and I was crying and shaking bad. I have seizures where I can’t help but moving or jerking so to try and stay still and laying on that hard surface with my bad back it was pure terror. 
I posted about my spinal issues over the years and older MRI results. My new neurologist wanted me to get an update to see if things were worse. I lost the ability to walk a few years ago but regained the ability to walk. I have herniated, bulging, exploded discs, degenerative disc disease, cysts on my spine and spinal stenosis. Well the results weren’t good. My Primary Doctor saw them first and he cringed and said “ouch” a lot and told me he couldn’t continue to read the results because they were too much and my Neuro would be better at explaining them. 

I saw my neurologist today and he said “interesting”. But he says I need surgery no doubt and as soon as possible or I will be quadriplegic (lose feeling from the neck down). My spinal cord is being crushed in a few spots on my c-spine and lumbar spine but they need to fix the c-spine in C4-5 right away. I’m losing fluid around the cord and it’s being flattened so I’m hyper sensitive in my legs and losing feeling as well. One good fall and I could be paralyzed or dead. My friends dad had stenosis he didn’t know about, fell off a small set of stairs, was paralyzed from the neck down and passed weeks later. My doctor doesn’t want that to happen to me. 

So I will be seeing Neuro surgeon numbers 2 and 3 one here in town and one at UCSF to get many opinions. I have about 4 or 5 neurologists and 3 Neuro surgeons now and some said to wait fir surgery years ago but now with the bad news they may all agree on surgery. My case is difficult because of my primary immunodeficiency, auto immune, MTHFR double mutation, lupus…etc so my risk of death is higher than the normal person and my risk of infection is very high since I’ve been on every antibiotic I may be tolerant to all. So the surgery was delayed all these years due to the high risks but now it looks like I’m having surgery very soon. I’ve dreaded this day for years. 

My poor mom is getting foot surgery in two weeks so this will be hard with just my parents and I and taking care of my niece. Plus having to drive 3-4 hours to UCSF while I puke all down the freeway won’t be fun. I get car sick very easy. I just got to stay strong and push through this like I always do. My Medi-Cal (Medicaid) was denied because of many errors the county made and then put the blame on the patient so I recently paid a surgery bill and can’t imagine how big this surgery bill will be! Wish me luck. I hope you all are doing better or finding good health care. Hang in there.!