Myelopathy (spinal cord damage)

[kari4550]

I have been diagnosed with myelopathy and am slowly going paralyzed and in severe constant pain.  I have lost most sensation & muscle strength in both legs from waist to toes.  I have been under pain management for nearly 2 years and yet my pain levels keep escalating.  Presently I can only walk with a cane & walker.  

Doctors at Stanford Medical Center have told me there is no "fix" for my condition except for pain management for the rest of my life.  

I also have severe osteo-arthritis in my right hip that's causing its own pain.  I am waiting to find out if I can get a replacement considering my neurological condition.

Anyone else out there experiencing this or something like it?  I am just now coming to grips with the severity of my condition and could sure use some help.

Thanks.

[nick30]

yeah things are better for me now. one of the best things i've done for myself is to get control of the little things. since making the pain go away was unrealistic I just tried to improve my general health as much as I could through diet, small amounts of excercise as often as i could etc. It gave me a sense of being less-useless than before(not quite usefullness but heading that way). I had no idea how strong the good feelings can get from even little things. It's definately worth trying as much as possible. I've lost weight, got a better tan, am more mobile, looking for more opportunities to get outside and so on. after many years of sub-standard life i'm finally getting somewhere. thanks for writing back. keep in touch. best of luck
Nick.

[kari4550]

Hi Nick:

So very glad to hear from you as well.  Besides keeping this awful pain under moderate control, my biggest challenge is my attitude.  I feel like I'm losing control over my life most of the time, but I also know that about all I really have control over are my actions and attitudes.  I do try to keep those "I wish I would just die" thoughts at bay.  Your post sounds like you're on the other side of these corrosive  thoughts now.  What are some things you do to stay upbeat?

I am grateful that I can still drive short distances and get around a bit with cane & walker, but am dreading the thought of being wheelchair bound.  Thanks for your encouragement, Nick.  It gives me hope.
Kari

[kari4550]

Hi Sabina:

Sure am glad to hear from you and to know there are others out there who understand.  I may not have the same trouble spots you do, but we share other similarities.  Like you I was outgoing, independent and active.  Living in constant pain and experiencing the loss of bodily functions, and not being able to get out much is depressing. My myelopathy is in my T 11 & 12 area.  Apparently my spinal cord damage had been going on for the last 5 or 6 yrs. & I didn't know it.  It took until late 2007 to find bone spurs growing into my spinal cord from both sides.  Since I had no pain in my thoracic region, no one thought to MRI it. I had spine surgery to remove the spurs, but by then the damage had been done, but I still don't know why I'm getting worse. Since then I have been on an even more rapid downward slide losing muscle strength and mobility and my pain level continues to escalate as well.  Currently I'm on Fentanyl 50 mmgs, baclofen and an assortment of antidepressants, anti-anxiety drugs, etc. Even though the drugs have gnarly side effects, I cannot live w/o them right now.

I'm scared to death, but know that keeping my thoughts & actions positive and reaching out keeps me sane. Sometimes I'm actually able to pull this off!  I live alone in a small town that I've been in less than 2 years and my condition has held me back from making many friends, so I am very grateful to have this forum so we can help each other.  Good luck with your post-op rehab.
Kari

[nick30]

hi there, yeah me too(feel for you). i would be concerned that such a major problem like this will easily have the ability to let you slide into a deep depression over the difficult yrs ahead. I don't underestimate the severity of your problems but please (i know this sounds kind of lame)but try to keep positive, keep up communication with family/ freinds and us folk. hopefully with the severity of your problems you shouldn't have much trouble convincing dr's of your pain. get it delt with properly from the start, get it as out of the way as you can. you really dont need chronic pain on top of your mobility probs. please take good care of yourself, dont think your life is over yet, keep looking for hapiness wherever you may find it. good luck
nick

[sabina55]

Hi Kari,

I recently underwent ACDF surgery fo rthe 2nd time C5-6 and have had a long history of chronic pain. I was managed in Pain clinic for the past year. My spinal stenosis became progressive and I also developed myelopathy in my hands,feet, and clumsiness. My legs began to feel heavy at times so I knew I needed further treatment. I had surgery at Johns Hopkins Hosp with a wonderful neurosurgeon. I am now nearly 6 weeks post-op and still have neuropathy in my hands and lt. foot. I hurt so much at times . I keep pushing to exercise on the treadmill to get strong again. I return to pain clinic tom. and I am going to ask for something to help me deal with all of this. I feel that emotionally I was doing ok. I usually am an outgoing person and active in my life. I feel like the wind has been sucked out of me today. Maybe it is  depression. They blame everything else on that so why not this.
I read your post and my heart goes out to you. I know somewhat of the pain you are in. I will continue to post hear in hopes of supporting others . I also need info about this condition. I also have an acoustic neuroma and trigeminal neuralgia that gives me reminders that it is there.
Does anyone out there have any helpful info. I am also very frustrated with life right now.
Sabina

[Mollyrae]

Hello Kari:

I just want to say that I'm sorry that the spine has gotten to this point. I really don't know anything about your condition but I'm sure that other members will be alone sometime in the next few days who can give you some great advise.

MedHelp is a great place to find caring and compassionate people. It's also a great place to vent your flustrations.

Please take care and poat as often as you like.
Mollyrae