Hi Sonata,
You and I are cut from the same thread! Sorry ahead of time for the long post, but what you wrote really resonated with me. I am 40, very active and have a 6 yr old and a 3yr old... "resting" is not a word in my vocabulary. Last August, I did something to my neck nerves while swimming and after a couple days of wicked pain, which went away mostly, I started having a bit of an achy neck and some tingling in my right elbow. Ignored it for a while and then went to my regular Dr who sent me for an MRI. That MRI has literally turned my world upside down. I was referred to a neurosurgeon who scared the crap out of me and told me I needed surgery ASAP since I had spinal cord impingement. I found out I had herniated C5/6 which hernitated straight back onto my spinal cord, where there is still some edema, and had herniated C6/7 to one side. I had posted here a bit ago as "MomofTwo - New Here and Freaking Out" if you want to read the actual MRI report from the first MRI on Sep 12th. Basically a diagnosis of DDD and canal stenosis as well as osteophytes were included. I had no idea I had any back or spine issues at all! This was (still is) all new to me and I am frustrated beyond recognition.
To date, I have been see by a Neurosurgeoan, and Orhopaedic Spine Surgoeon, and a Pain Mgmt Rehab Dr who all agree I'm pretty jacked up. I have been doing Physical Therapy 3-4x per week with something called McKenzie protocols and cervical traction amoung other general poking, prodding and pulling. I had an epidural steroid injection at C5/6 on Oct 29th. It hurt like heck and the concious sedation stuff they gave me did not work. I came flying off the table when the needle hit. It is now 100% more sore than it ever started out to be!!!! The Drs think the steriods have not yet started working to where I will notice it. I went back in on Nov 1st for another MRI, CAT scan to evaluate facet stability and found no degradation or improvement. I have seen the films, but not the written report.
There is still cord edema, but no evident nerve damage. Only an extremely high risk of having permanent damage. I am so frustrated and depressed I want to scream. I am not so bad off that I am dying for someone to operate on me and in the words of my spine surgeon, "the benefits do not out weigh the risks". The other surgeon gave me the speech about dangers of waiting until it was too late to treat spinal cord issues and having serious consequences.
As of this week, I have been sent back to the pain guy to be evaluated for another injection one level down to see if it helps. I go back in to be reevaluated the first week of Decemeber by the surgeons. I have been told now by both surgeons I am a prime candidate for disc replacement due to the high likely hood of adjacent level disc problems given my young age, activity level, and propensity for disc problems. Outside of this, I am a healthy, active and sporting sort of girl who is not dealing well at all with the few limitations that already been placed on me. I would have to go up to Dallas to have it done at Texas Back Institute, but I am told they can do a 2 level replacement there without joining the trial. ? Not sure what that is all about yet but I will find out!
I think the psychological acceptance that something this life-altering has affected me is like being hit by a bus from behind. I am not dead yet, but left spinning out of control in the middle of the street trying to figure out what just happened and how to get off the road.
I am the furthest thing from "expert" you will find, but from my research on my own issues, I was told, the "moderate" stenosis part of my diagnosis rules out any surguries with a posterior approach. Too risky given the impingement of the cord in my case. A laminectomy was not an option since the herniation is ruptured directly in front of the spinal cord. Anything else but fusion was ruled out in my case due to the locations of the rupture ad the spurs. I have also discovered that there is not a heck of a lot of information out there to assist people like us who are not living life in horrible dibilitating pain (THANK GOD!!). We fall into a weird catagory of not bad enough to warrant surgery, too bad off to continue doing nothing, and destined to eventually require surgery at some point in the future. In some wyas, I just want a decision so I can get on with it. The waiting game is maddening. While "waiting" I am not to have any exercise with impact. Hello.. has anyone ever had a 3yr old that didn't jump or pull on you without "impact". Having all the manipulation from shots and PT leaving morenow than there was to start, has led to a life of occational pain pills, rest, and little or no physical excercise. I want to hurl large objects off my roof at the next jogger I see. I know that is not rational (not to mention legal) but the anger and frustration can be suffocating. I am trying my best to stay positive, but it is not easy. I have started to read in my "down time". I mean an actual adult book, not "Skippyjon Jones Goes To School". I will say this was a refreshing change.
You are not alone on your feelings, I know exactly what you are going through. There may not be many of us out there, but I am here if you want to vent.
Mom of 2