Thanks. Diary is absolutely important. Please everyone if you don't keep one, try it at least. I write down drugs taken, exercises done, things accomplished, fun events, and feelings(It is always good to go back and read something like 'I am about to give up', and after that, fast forward a few days/weeks/ later in the diary and read about some much needed progress). The fun events are important also. I would not recommend a diary of despair for me, but one size doesn't fit all. Also, I have learned to explain to folks(who are close) more about how non enervated muscles are different from regular ones.
Someone wrote about their glutes just going out. Yes, been there and still do that. Very frustrating to just quit with no warning. I used to sit and wait for the room to clear so relatives would not have to witness that event. I am getting better at asking for help when I need it.
Good luck to all, and thanks to all who contribute.
I was lucky enough to "sleep" through the first few weeks post injury
I posted a thread about adrenal insufficiency. Vomiting is a red flag symptom. Too much stress wears the adrenal system down. Some of us have an insane amount of spasticity. As I understand my research, the central nervous system creates spasticity because it doesn't like it's signal returns. Our doctors can block our symptoms but the bad days are 24/7. This kind of activity wears down the adrenal system (adrenal fatigue). If a lot of steroids have been used trying to treat symptoms, it can damage the adrenal system. A primary doctor can test for low blood sugar, potassium and sodium but an Endocrinologist is needed to stress test the system for cordisol production. Insufficient cordisol response to the test requires hormone replacement therapy. It's crucial to monitor the condition. You're right to blow off any doctor that thinks they can put a number on your recovery. Recovery is tricky. Too much activity aggrivates the condition and too little will contribute to staying weak. The best advice I got was to listen to my body. My body tells me when it's good to go and when to back off. I'm a little over 2 years and just started driving again. My husband and caregiver only allow me to go to my doctor visits and back. And my caregiver rides along. This week I will be going alone to getting an X-ray. Keep going without expecting to be in control and you'll do great.
My story is different. I do not have an SCI per say. I have peripheral neuropathy. It is progressive in nature that began to manifest itself about 10 years ago. I first noticed tingling in my feet. Went to several podiatrist and no one could diagnose, finally one recommended that I see a neurologist. He diagnosed me after a nerve conductivity test and put me on gabapentrin. He initially thought my problem was caused by exposure to toxic propellants when I worked at the Cape.
Well as time went on, the symptoms progressed, numbness in my feet, then paralysis...now it has progressed to my knees...with numbness now moving to my saddle area and some in my hands.
I've had several MRI's and it appears that I've got issues in my neck from C2-C5. The neurologist wants me to see a surgeon...I won't do it.
I can stand. but unassisted walking doesn't happen. I can walk with AFO braces and forearm crutches...but legs tire very quickly. I've become used to my wheelchair...so that's my primary means of transportation.
It sounds like an autoimmune problem. You didn't mention seeing a rheumatologist. A complete work up of the rheumatoid system should be done before seeing a surgeon.
I have improved so much in the past year. I got on an antidepressant that helped with my nerve pain a little bit. I see a pain mgmt dr regularly and get trigger point injections in my shoulders & neck every 3 months. I walk most of the time I leave my house, and the only thing that stops me from walking is the crippling neuropathy in my feet. It feels like my right foot is wrapped with razorwire and/or razorblades are shoved into the bottom of my foot. It eases up when I take off my shoes. Kinesio tape on my arch helps a bit. My left foot is still pretty numb and doesn't have much neuropathy. I'm glad I live in an apt building that has a carpeted hallway & lobby. By the time I get back from appointments or small errands I walk to and from my car for, the nerve pain becomes unbearable, so I sit down in the lobby and take off my shoes to make it the rest of the way down the hall without screaming in pain. Sometimes I still cry and partially hop because the pain is so bad. Thankfully, my neighbors leave me alone now though.
Edit: I recently tried on my AFOs only to realize they are too small now since I've rebuilt leg muscle, and the bend that's supposed to be 90° at the ankle is actually like 85° and is too small to make it possible to stand up or walk! I've never used them and never will now. They always made my neuropathy worse anyways.
this is an interesting thread i too have about 50% feeling in my glutes but sometimes i wish i had none as the pain of sitting for even a short while can be unbearable, i cannot get comfortable no matter what type of cushion i use and although i can walk to a fashion i get worn out very quickly but happy i can walk however
i was diagnosed L1 burst fracture but i have all the traits of cesr thats cauda equina with retention but someone else said i have conus medullaris which makes even more sense if you google it emedicine.medscape.com/article/1148690-clinical and have a look at the table below
lara the feet issue sounds like proprioception? i know my father had it no doubt a doctor would know better
i was told once by a doc i had paraparesis but i think thats an old term and the definition just gives weakness of lower limbs which is not really adequate as i use catheters and digstim so am paralysed to a certain extent and not just weak
I recently tried on my AFOs only to realize they are too small now since I've rebuilt leg muscle, and the bend that's supposed to be 90° at the ankle is actually like 85° and is too small to make it possible to stand up or walk! I've never used them and never will now. They always made my neuropathy worse anyways.
Funny you should say that, I had similar problems, so had to give up wearing mine . . I always wear riggers boots ( engineers ) now, nice & rigid for the support for walking, with steel toecaps in case I drop things or trip over. Also handy on the trike.