Hi how are you guys? This looks like a terrific forum, I say that in all sincerity. Peer support is so personal, valuable, and well supportive... I'm glad I found you guys. Taking a page out of the post "What should be included in your first post" not to feel like I'm being graded too harshly on this post Identify what your current problem is:
Today I can't walk, really at all (I usually walk since May 14 with a walker and am adept at it), I went to the ER and they sent me home after *sigh* another ER MRI confirming what I already know - the stenosis. Not sure if it's relapse, flare up or what.... I've had the stenosis since May 2014 but it hasn't been this debilitating. I can walk a few steps, maybe 7 ft and then I collapse. It feels like intense pain, weakness, numbness from the sciatica, stenosis, and nerve root death.
Is this normal? I'm inoperable for the stenosis, at current my size. Is it normal for the ER to send you home when you can't even walk to the bathroom? (being very honest - this poses some problems. Dignity just went out the window...) Is it normal for them to send you home when you are still in intense spinal pain? Without pain meds and just say 'wait until morning' then fill the prescriptions?
I currently have severe sciatica with spinal stenosis with suspected nerve root death and arthritis.. that's about all I know about my current issue. I know it's a narrowing of the spinal column though, due to my (formerly severe) S shaped scoliosis of 90 and 70 degree curves when I was 10 years old. that year - 17 years old - I had spinal fusion with Harrington Rods from C7 to L3 (I believe. Contributing to the problems is my morbid obesity due to an eating disorder, and complex PTSD - partly from the surgery at 10 years old. Its a cycle.... How long have you been dealing with it :
See Above, my entire adult life since I was 10 and spinally fused I've had sciatica. But the stenosis is from May 2014. One day, in May, I was walking normally-ish and the next day I could barely move and needed heavy meds and a walker. I'm thankful I'm not on narcotics yet - I'm 27 and I know there isn't much to go from there, but it may be my next pain management step unfortunately. Today I just stopped walking - terrifying, but I'm trying to keep objective. What doctors have you visited (ie type - Primary Care, Spine Specialist, etc):
I have my primary care, along with my orthopedic/neurosurgeon who did the surgery when I was 10 in 1997 working with me on these issues. I also have a neurologist/pain management specialist (she's both), and an actual spinal pain management RN at a spinal pain management clinic.
I'm calling all 4 doctors tomorrow, but although they are all very helpful, they conflict on what course I should take. I'm not sure who I should listen to - which is why I'm here - I'm doing research if you will... And looking for support for chronic pain management - it takes a toll on you which you guys are unfortunately are familiar with. What diagnostic test have you had and what are the results
MRI - Today - Spinal Stenosis
CT SCAN - Early June 14 - Spinal Stenosis, inoperable due to obesity
MRI - January 14 - Fairly normal, some small changes, possible congenital disorders in upper cervical spine
Xrays - June 14 / Nov 13 - Normal, for me, 20/30 degree scoliosis with the Harrington rods intact
XRAYS 1997 - 2013 - normal
SSEPs - 2013 - Normal What medications are you currently on?
For pain: Gabapentin 800mgs 3x daily
Meloxicam (Sp?) 15 mgs
Prednisone (steroid) for 5 days
Muscle relaxant (pack? I haven't gotten it filled yet, looks like some kind of steroid mix)
Ibuprofen (Which I can't take with Meloxicam) 600 mgs 3 x a day...
(In ER last night)
Tergedol (Sp?) injection
*Big* Steroid shot of something or other
Valium for muscle stabilizer and calming after almost falling several times - these did work for 12 hours now I'm home with prescriptions I can't fill until 9 am. What treatments have you had so far? Conservative or Aggressive?
Mostly conservative. I have had PT (Physical therapy) on and off since 1997. I've started in earnest this past summer, being home bound for awhile due to the pain - I had PT at home. I now see PT 2 times a month but I can't make tomorrows appointment if I can't walk - can I? I don't think I should...
I'm on medication for the nerve pain, and anti inflammatories as you can see.I'm considering the double epidural steroid shots from my spinal pain management center. I'm considering though don't really want to go on narcotics.
I try biofeedback techniques that help. I meditate, and I used to do yoga. I "live in other parts of my body" while in pain. My mind goes other places. I try to encourage myself while walking even though it's petrifying to not be able to feel your legs really. What are the recommendations/action plan from your doctor(s)
Spinal Epidural Steroid Shots (Double in S1), Narcotics possibly Methadone, and Physical Therapy. I don't really want shots or narcotics - but I'm willing to try them at this point. Also they're recommending PT Inpatient Rehabilitation. Have you had previous spinal surgery? If so, identify when , what and the results
I was 10 years old
1997 - Spinal Fusion with 2 Harrington Rods from C7 to L3
The results were good decreasing a life threatening 90 and 70 degree curves to 30/20 degree curves. I had no real problems (some sciatica but not bad) - until 2010. Then the nerve root death started, and in May is when the stenosis appeared. Any other information that can help the rest of this site understand your situation
I have anxiety that isn't being made better with not being able to walk. I feel my legs buckling from the numbness/pain a weird sensation. And I've had other weird sensations in my legs and arms. I'm hoping it's nothing like a systemic neurological disorder, but my neurologist doesn't think so. I have burning, tingling, like someone is holding a firework sparkler to my toes or fingers. I have my legs fall asleep all the time. I feel like if I do try and push myself, I will fall. I know I will my legs are horrible right now - no idea why - one day it was okay the next (same thing that happened in May but now it's worse).
Does any of this seem normal for stenosis? What questions would you ask your doctor(s) if you were in my place? Should I be worried, and if so how much? Is there anything that could get me walking again from your experience - the shots, narcotics, or something else? I'm worried more than anything, and I'm contemplating inpatient rehabilitation. Not sure which way to go a few doctors are conflicting on their advice.. I know it's ultimately up to me, I just wish there was a clear path to getting better. It seems so complicated.
Thank you all in advance for any help, suggestions, commissary, you can share with me. I'm going to try to sleep but I doubt that's possible.
PS sorry for the novel
~ Faith is the substance of things unseen.. and what is hoped for ~