I put a video at youtube of a demonstration of how I'm walking now. It's not pretty. LOL! We are trying to document if I am progressing or regressing as time goes on.
https://www.youtube.com/watch?v=ca6-kpgQ_io
I hardly know what to say, Linda. No one wants MS, but no one wants your condition either. I just hope the symptoms can be treated successfully, or at least reasonably, if successfully isn't realistic.
Please keep posting for support.
Sending hugs,
ess
Hey everyone. You have no idea how your comments and supported have lifted me up in spirit today. Yes, there sure could have been worse, or even other alternative outcomes... some more iffy than others, but at least now we know.
The questions about injuries, can be fairly easier to answer, now that I have the ability to put the pieces together. The original car accident and surgery, which "bruised" my spinal cord, was the initial injury. (1997) I had been relatively stable for several years other than some neck pain and Lhermitte's on the right. In October of 2013, I fell HARD ... a 3 point landing backwards on a hill. I hit my tailbone, mid-back, and the back of my head. It knocked me out for a few seconds. When my head hit, I felt the "jarring or jolting" of stuff in my neck. It is felt that this fall, started the process of re-injury to the spinal cord. It was shortly after this that the progressive numbness began. :(
Yes, so I am beginning to emotionally process it all, and come to terms that this level of disability that I have is likely irreversible. Surgery would do more harm than good, because the lesion branches off... or has fingers that reach thru the cord at C-4 7 C-5. Trying to take it out would harm more of the undamaged tissue, so best to leave it be.
So, thanks for all the support, my friends.
Hugs,
Linda
Linda, I am so sorry that there is nothing more that they can do but monitor and address symptoms as they come.
You have had quite the roller coaster ride these last few months so please take some time to just be good to yourself.
I know you were hoping for more from the team at Vanderbilt but I also know it would seem that you are in good hands and being well monitored from now on.
You will move on from this disappointment and continue with your journey.
Hugs,
Corrie
I'm not sure what you were anticipating, but monitoring and managing and trying out new combinations of medication whilst not pursuing a course that could leave you in far worse shape (surgery), IS doing something. Think of it as your new game plan, not as a non plan.
Just a couple of weeks ago, it seemed possible you were facing a spinal tumor that, whilst slow-changing, would likely lead to inevitable insidious progression. This new understanding of what's likely happening must be frustrating in the extreme, but you're now in a position to get a strategy together to address what's really happening.
I'm not preaching the 'stiff-upper lip' to you. I understand your disappointment at being given a less-than-concrete sounding roadmap. I also think it's important to allow yourself time to take it in and vent and experience the emotions surrounding it. You've been on one heck of a journey! But don't spend too long in that head space. You're too strong and too determined to lose time to unproductive inaction. Allow yourself to process this. Allow yourself a little rest. But in the words of one Ms. O'Hara, tomorrow is another day. Your perceived non options ARE options. They may take more stamina to figure out, but if there's one thing this forum knows, you're not lacking in stamina!
There's a lot of solidarity for you here, Linda. We have a real sense of this crazy journey you've been on. And I think most of us can sympathise with your emotions right now, if not empathise. But you're a fighter. This is not the end of the story for you, just a course correction.
Hey babe,
I'm so so sorry your feeling so badly about this but you knew as much as this out come is upsetting you, basically all the alternative outcomes they'd laid at your feet, were genuinely not what you wanted to hear either, right?
BREATH.....babe, don't you give in!
Additional or different medications, monitoring etc is definitely NOT doing nothing to help you, the right treatment plan may be what makes every thing different for you......please don't give in at this stage, keep your head up the fight is not over yet!
HUGS.......JJ
I'm sorry they couldn't come up with a resolution for your symptoms/scarring on your spinal cord and I know it's not what you wanted to hear from them. I wouldn't have thought there was much they could do for the spinal cord anyway as I always thought any sort of surgery could result in paralysis. If it's scaring have they said it may remain the same or may get worse?
I can only imagine how you are feeling right now and I can hear your emotions in your post. Please except these cyber (((Hugs))) and know that we all care.
Karry.
That stinks. I hate to even say this given what you've been through with doctors but surely there is a second opinion out there with some help beyond symptoms? But maybe not since I think Vanderbilt is pretty hard core, no? I wish you'd had better news, but surgery might have been risky and might not have been what you wanted either. Have they given you any idea about the progressive nature of the scar tissue and what to expect? It seems weird to me that scar tissue would continue to cause and increase symptoms. I'd want an answer to that. Hugs.
I am so sorry. It would be nice if they could do something.
Alex