Do you have leg pain and weakness?
Posted , 6 users are following.
The pain in my neck is so bad I have to rest in bed. I get up and down frequently. Will this cause me additional walking problems?
1 like, 12 replies
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Notes on Do you have leg pain and weakness?
judy2201 Apple62
Posted
Have you had surgery yet. I don't believe the fact of you getting up and down is going to cause you additional problems . The thing that makes a person get worse is to NOT have the decompression surgery. Chiari is progressive and will get worse Surgery doesn't cure it however it will stop the progression. Sometimes it alleaviate pain. It stopped the neck pain and headaches for me. Most importantly you must have the right surgeon even if you must travel. My son almost died because he went to a local surgeon who didn't know squat and he has had to have several surgeries to rectify what that man did. So choose the right surgeon. If you've had surgery forgive this long post but maybe it will help others
Kel230213 judy2201
Posted
I don't believe that the pain wi worse IF YOU DONT HAVE DECOMPRESSION! I had this in January 2016 and I now am wheelchair bound all thanks to the stupid decompression, I still have the same issues and pain plus more since this and am no further forward! My advice is don't go for the surgery half heartedly or thinking once it's done that's it no more pain, I no studies say SOME ppl have better relief than others but I've spoken with a few ppl in hospital and not heard a good outcome yet. Wish u all the best and hope you find some relief soon but I'm wishing I'd never had it done
judy2201 Kel230213
Posted
I'm so very sorry about how your surgery turned out. I continue posting about the importance of the surgeon. My son went to a quack surgeon who really had no idea about how to do the posterior fossa decompression and he has had to have several surgeries because of that first one being so messed up. I wish you had a better outcome. So very sorry
Apple62 Kel230213
Posted
I'm sorry your surgery didn't help you. I had a good surgeon. He was the Director of Neurology at Emory University Hospital in Atlanta Ga. Unfortunately, I ended up in assisted living in 2015. I'm still able to walk but I'm feeling weakness in my leg. My neck feels unstable. I suffer stomach and back pain. I also have pressure on my ears and eyes. I feel bad about describing all the pain. My family listens put I don't think they understand. I'm grateful to have this forum for support. Good luck to you.
judy2201 Apple62
Posted
Apple62 judy2201
Posted
How has the syringomyelia affected you?
judy2201 Apple62
Posted
Searingyelia has caused nerve damage to my spinal cord and it causes pain in my neck and arms. I'm now 73 years old and really not too active. Between my age and the pain, I now spend a lot of time in bed. I'm an artist so I do a bit of water colours I can walk but fell recently which caused so much more pain I was hospitalised for almost a month and had to work through being in a wheelchair to back on my feet once again. A little weak and after a few minutes on my feet I have to sit. But I feel I'm doing alright and thankfully 😅
Apple62 judy2201
Posted
I'm in and out of the bed. I just feel like I'm getting weaker in my neck and legs. I do have back pain. I appreciate your comments.
betty17653 Kel230213
Posted
I'm 61 years old I've had Chiari one malformation with syringomyelia,,,since I was eight years old or at least that's when I remember having the headaches so bad that I couldn't do anything but in bed the nausea was uncontrollable at 40 I had a decompression surgery they also put a shunt to help control the syrinx! I'm now 61 like I said before my pain is still as bad as it was!!But without so many headaches now I do take pain medication and have since 1994 sometimes the pain is unbearable now is down arms legs shoulders neck I do get occasional headaches also. But it's still better than it was before. All I can say is if you haven't had the decompression please do you will feel better. It will take a while took about a year for me. God bless
betty17653 judy2201
Posted
Stay busy Judy Stay up and walking if you can!! I think that's the only thing that has kept me from shutting down. I push myself quite frequently just to keep going I make myself get out of bed I know you're 73 and I'm only 61 but we have to keep going I'm got beautiful grandchildren last 3 are the babies I won't stop because of them! I want to live so much for them. And myself of course. Is the pain then drive me crazy. I'm on pain medication and I have been for many years. Going to the same doctor for the last 12 but now they want to take me off the medicine because Of what our government says!.I just don't understand.
b2wc97455 Apple62
Posted
Apple62 b2wc97455
Posted
Thanks for responding. It's good to hear you got better.