seeking others w/ CENTRAL CORD SYNDROME

[faceplant]

Hello my fellow Central Cord fans~
I just thought I would let you know that I have to go in for a second surgery....yuck. It seems that my cervical fusion at C5/6 is solid but C6/7 never grew any bone so they called it a pseudoarthorsis which is code for a failure to fuse I guess so they are going back in on Thursday to do a Lateral Mass surgery on the C 6/7 level from the posterior or back of my neck and place two titanium rods to assist to get this level to fuse. I will have to wear a miami J collar for 4-6 weeks which I am certainly not looking forward to. Hopefully this will take care of the pain in my neck but I have learned not to be too hopeful about that. I just hope for the best. So I guess as with everyone the saga continues. The pain clinic has been helping with the hand pain but the neck pain has certainly become pretty bad which is why I have stayed off the computer. I hope everyone else is doing well. I know we are all NOT looking forward to the cold weather coming I know I am not.

Deb

[Evonne]

Deb,

I'll be thinking about you and saying a prayer for you as you go through your next surgery. I'm sure the fusion will go just fine. As you mentioned, I'm not looking forward to the cold weather. Be sure and post after you feel better so we know how you are doing.

Evonne

[Robert G]

Good luck with the surgery. I hope all goes well! I wore a Miami J brace for 12 weeks! I was lucky I did not need surgery.

[jeffrx]

Good luck with your surgery. I still have nightmares about mine (that's how I became paralyzed). But mine was a one in a million complication and surely there has not been a million surgeries since mine.

Will be praying for you!

[faceplant]

Thanks for the good wishes everyone!!

[lavenderthistle]

I'm so sorry you have to have another one! I had a variety of collars over several months. I think the J was more comfortable than the Philly. Definitely better than the Aspen! They sound so much more exciting than they are don't they? Such perky names for such a pain in the neck!

I will send prayers, good thoughts, positive vibes, warm wishes, speedy healing and improved pain relief all your way.

I am actually happy it's cooling off, for some reason heat makes the burning pain in my skin worse. I will take limited mobility, aching and insomnia over burning and insomnia any day. I guess I'm the oddball.

[firemeng]

I am a fellow CCS C2 "walker". I am two years postinjury, I have right side deficit and my left arm I can barely lift above 90°. I was in the ICU for six months. I was vent dependent but thank God I was able to get off! I am now going to therapy three days a week and fighting to get back on the fire truck.

[Revis]

Originally Posted by faceplant

Hopefully this will take care of the pain in my neck but I have learned not to be too hopeful about that. I just hope for the best. So I guess as with everyone the saga continues. The pain clinic has been helping with the hand pain but the neck pain has certainly become pretty bad which is why I have stayed off the computer... I know we are all NOT looking forward to the cold weather coming I know I am not. Deb

Keep us posted on your surgery and outcome, faceplant. I'm really sorry to hear that you have to go through another procedure, but I'm praying and hoping for you that this will reduce your pain big-time. I bet it will.

Yes, the cold is coming! I love 72 to 85 degrees and being able to wear shorts. Our temps are now diving into the low 30s and upper 20s range at night, although our day-time temps have been wonderful. Next week is forecasted to be all rain and mid-50s. Yuk. Drove over a Montana pass last Saturday that had fresh snow on it. I had a spell of trembling and stiffness one day last week after doing too much exercise and being out in the cooler evening temps. Bring on the fleece!

Welcome to the thread, firemeng, Wow! You were a long time in ICU. So glad you were able to come off the vent. And, walking! Amazing. CCS is such a weird version of CSI. I hope you can continue to make progress. It's a challenging battle each step of the way. Hang tough.

[BillyG]

I to have/am CCS. Just curious my feet are my biggest problem I have. They burn sometimes so bad it puts me to tears. I also live in flip flops and cannot wear shoes because nothing can be touching them. Anyone else suffer from this??

Thanks much
Billy

[TiggersMom]

...and wonder why the idea of searching never occurred to me before!

My name is Donna and I am 5 months post-injury. I took what, at the time, was an inexplicable fall on my driveway on May 2. I didn't slip, didn't trip, my dog didn't pull me off balance, and I never lost consciousness, I just suddenly hit the driveway. I immediately started to tingle from my neck to my toes and was petrified to move at all. And didn't! I remember the trip TO the ER, but nothing again until I arrived at the rehab hospital three days later. I spent two weeks at the most incredible facility (Good Shepherd Rehab in Allentown, PA) making incredible strides because thankfully, I was able to walk, albeit with a walker (hot pink and very cool looking! LOL) My neurosurgeon scheduled me for a C-4, 5 6, 7 laminectomy on May 31. However, I was readmitted to the hospital due to insurmountable weakness that only occurred after I got home. It turned out that while in the hospitals, I developed three ulcers. The good news was that my surgery was moved up and done on May 20, and I was discharged to home two days later (Did I mention that my rehab was awesome? So good that I didn't have to go back there because I had done so well in the pre-op phase!!!) As it turned out, I had congenital spinal stenosis and never knew it. In retrospect, there were incidents in my life when I fainted (hitting my knee on a log, and having my shoulder pulled in an odd direction) that were probably related. So, on May 2nd, my wiring just sort of glitched and took me to the ground.

In the first days and weeks following my fall, hypersensitivity was a nightmare in my hands and forearms, and the freezing sensation was intolerable. I was so frustrated by not being able to explain the sensations and struggled with having to take pain meds because my hands felt so cold, but only to me, never if someone felt my hands. Let's face it, if you go out in the snow and your hands get cold, you don't take pain medication, right? I had to learn that this sensation, that was like sticking your hands in snow, was a completely different way of doing things. Apparently I was in denial though, because I also couldn't wrap my brain around the fact that yes, I really did hurt myself, and seriously at that! Duh!!!

As of now, with months of in-home and outpatient PT and OT, I have full mobility. Currently I am on Vicodin (which does help make the cold hand sensation more tolerable) Robaxin (for the muscle spasms and twinges/shocks) but I have recently gotten off of the Fentanyl patches (YAY!!!!) I have started to use a cane, somewhat for balance, but more because I look perfectly normal which means that people bump me, or back up in the line in the grocery store, etc, not realizing that I can't respond appropriately to such actions. Quick movements, particularly backwards and side stepping, scare me. I have just ordered "ice tips" for my cane because winter is coming fast and I worry.

Based on your posts, I will mentally prepare myself for the possibility that my first winter, post-accident, may be worse as far as pain goes. And assume that it won't! I also appreciate learning that this "heavy" feeling in my legs is probably related to this, as well as the hot sensation that developed in my feet. I wasn't sure whether they were neuro or vascular. I should mention that I have yet to see a neurologist, and was discharged by my neurosurgeon in July. My first appointment is next week. I cannot fathom WHY it takes this long to get an appointment with the neurologist, but I'm told that this is common.

Every bit of this experience has been filled with blessings, and finding this forum is just one more. Reading your posts has further proven just how lucky I am. In the one hour since I found you, I have learned so much, confirmed so many suspicions, and found yet another reason to be optimistic! How wonderful to find people that truly understand this experience. I wish you all a WONDERFUL day, and thank you from the bottom of my heart!

Donna

P.S. I also promise to keep my future posts shorter, but because this is a recent event, I thought my experience might help someone else who has recently suffered a spinal cord injury.