Hi I live in Australia and could find any support groups dealing with this subject. I've just been given a diagnosis of neck stenosis, not sure what the difference is with myelopathy. In searches I came upon this site, thank goodness as I really wanted to know how others live and cope with this.. I am worried as my life has dramatically changed in 18months. I went fromm being very active to some days having great difficulty walking. I haven't walked properly in last 18 months. I have had to use a cane sometimes. I Ve been tested for everything and went to. Rheumatologist who ordered MRI looking for myelopathy.
I started having burning in my feet and hands, splintering sensations in my fingers when typing. To some days being almost unable to type, esp during humid or cold weather. I have weakness in arms and legs. I have lower back arthritis too and right now dreading having to sit in my office charge each day. My doctor is going to refer me to spine specialist and I'm taking amitriptyline. It feels strange to have deteriorated. so much in such a short time. I don't mind admitting I am frightened about what the future holds for me. I don't know the extent of the deterioration in my body it doesn't feel great. I didn't get much info from my GP, so thought I would join and xso thankful there is at least some support out there. 😊
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Dizby
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I had we call it over here ACDF on the top of my spine you will be ok some Dr give the op 3 to 5 years I also have a degenerative spine so I am in full support of how you feel at look I am not being funny but have they done a risk assessment on your work station when I did work we had to have this EG cushion to sit on with a hole in the middle a special back and kneck chair. Please ask your Dr for stronger pain killers but get work sorted out now all else fails you will have to go on sick leave.
Thanks. Keiton I had work assessment done a while back. I'm very concious of my posture and take Panadol osteo when the pain gets bad. It only takes the edge off. I will keep going as long as I can. Just don't want to make matters worse for myself. Either.
Hi Dizby, I am now looking at this on my computer instead of my mobile and see that not only did I spell your name wrong, I didn't adequately address your concerns.
I have had 2 ACDF's and never in my life did I realize how fast my life could change on a dime. I was telling my doctors that something didn't feel right, like my motoring skills needed oil, just like the Tin Man in the Wizard of Oz. I was going to the doctor every so many months trying to figure out what was wrong. Fast forward 2 years and before I knew it, I entered my GPs office dragging my entire right side in with me because it was stopping, no amount of oil for this Tin Man would work. I was rushed over to an appointment to a Neurologist who sent me for an urgent MRI on Thursday, Friday I was told to me an orthopedic surgeon, he said if he didn't operate immediately I would be paralyzed. Hence the first surgery 3/2015.
AFTERWARD: I have fought hard to get back to a place of stability. I have had 8 operations in all, I thought I would die when I was refused pain medicine, instead was lectured on opiod addiction. I have had to fight back several times to a place in which I was walking. At one point I was doing pretty well, and 6 months later I was back for more surgery. I have every assistive device I can think of from wheel chairs, walkers, canes, trekking poles, you name it. But I can walk now with a walker or small distances with a cane, longer distances I use an electric wheelchair. It becomes a way of life, you find things to occupy your mind so you don't think about the pain as much, for me it was audiobooks at first. Then it was coloring books for adults, then is was trying to dance with my cane. You must learn to be creative and think of other things through the pain. But you probably still need to rest and let your body heal. The noise will quiet down in time, or maybe we just get used to it. You will learn what your triggers are, mine are cold, storms, too many people touching me in crowded rooms, new surgeries.
I hope this helps from my experience, and my experience is like several others, but each of us have a different story on how we got here. I encourage you to go to Myelopathy.org and read the stories people have written.
Sheila thank you for your reply. I am so sorry for what you've been through. I can empathize with the going to doctors trying to find out what's wrong. And you description of Tin man is apt. I feel that daily . I know in stormy humid weather I feel like I've been hit by a car. I will join the group. I've been off Facebook for a little while...just been feeling miserable to be honest. I thank you so much for sharing your story.
I for one completely understand the issues with Facebook. For the most part, being the Administrator of this and the Facebook group, I pinned two groups which I can easily navigate to them.I would encourage you to try it, you will the love from so many other that really feel your pain.
The struggle is real hard, try not to do it alone, this group feels like my family.
Hi Dizby, I was diagnosed in November with the same and am on the urgent list for decompression surgery. Just to let you know that there are a couple of really great cervical myelopathy groups on Facebook they've been very informative as there are people at all different stages of the disease. I wish you all the best x
Yeah thanks Flynny I will have to reactivate my fb account it seems. I will get on to that as really need to be in touch with people going through this. 😊
Hello it is me again, I am wondering if you have given anymore thoughts to the surgery? I really wouldn't wait, the earlier the diagnosis and surgery if needed the better the outcome. Let us know. Thank you.
Hi thanks Shelia I am still waiting to see a spine specialist. At this point it will probably take a while. I will let you know what happens, just getting into see a specialist here. Can take months!
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Osteoarthritis and numbness ??