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tethered cord
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lumbarcrazy posted:
I was born with tethered cord syndrome....went to doctors all my life with back pain also being paralyzed for days, as a child I would just be walking and fall down my legs would not work. As I got older and had children the back pain and pain in legs and my back locks up to where I cant move my body. I did have the surgery to untether the cord but it made it worse. 3 years ago my back locked up I could not move at all...I mean I could not walk , bend etc. I was in a wheelchair for 8 weeks but the chronic pain never left after that. I am getting so much worse, my back my legs my feet, I have had 3 cervical fusions. I cant get the doctors to really say what my problem is. And when they do say something in specific they wont put it on my records.. I dont know what else to do. I have saw 2 neurosurgeons I just did and mri to check for MS...I dont think these doctors really know that much about my condidtion. I was told the chronic pain I had was inside my spine and would not show up on an MRI and it would only get worse.Is there any advice anyone can give me. It hurts so bad to walk it feels like my feet and ankles are broken, my legs hurt so bad. I always have nerves twitchin all the time....I dont know what else to do
3 Replies |Watch This Discussion | Report This| Share this:tethered cordI was born with tethered cord syndrome....went to doctors all my life with back pain also being paralyzed for days, as a child I would just be walking and fall down my legs would not work. As I got older and had children the back pain and pain in legs and my back locks up to where I cant move my body. I did have the surgery to untether the cord but it made it worse. 3 years ago my back locked up I could not move at all...I mean I could not walk , bend etc. I was in a wheelchair for 8 weeks but the chronic pain never left after that. I am getting so much worse, my back my legs my feet, I have had 3 cervical fusions. I cant get the doctors to really say what my problem is. And when they do say something in specific they wont put it on my records.. I dont know what else to do. I have saw 2 neurosurgeons I just did and mri to check for MS...I dont think these doctors really know that much about my condidtion. I was told the chronic pain I had was inside my spine and would not show up on an MRI and it would only get worse.Is there any advice anyone can give me. It hurts so bad to walk it feels like my feet and ankles are broken, my legs hurt so bad. I always have nerves twitchin all the time....I dont know what else to do
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Caprice_WebMD_Staff responded:
Hi Lumbarcrazy,

I'm sure one of our experts and others will be responding with their support and suggestions but, in the meantime, I wanted to welcome you here.

I'm sorry for your need to be here but glad you found us.
We must let go of the life we have planned, so as to accept the one that is waiting for us.
~Joseph Campbell
Report This| Share this:tethered cordHi Lumbarcrazy,<br /><br />I'm sure one of our experts and others will be responding with their support and suggestions but, in the meantime, I wanted to welcome you here.<br /><br />I'm sorry for your need to be here but glad you found us.
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Peter Abaci, MD responded:
Thank you for sharing your story with us. You must be a very brave and strong person to have worked through this over the years. The pain and symptoms you describe seem to be consistent with your diagnosis of a tethered cord syndrome.

One thing that I often remind patients is that us doctors don't know everything. Despite all of the modern technology and new research, there is still a lot about the human body and medicine that we can't comprehend. As hard as it may sound, try not to get too frustrated or anxious over the things your doctors can't understand or explain to you.

With complex chronic pain problems like this, it is helpful to take things one day at a time and try not to overload yourself. Work with your doctors and providers to learn some new tools and techniques that you can use to better manage your symptoms each day. Think of this as a step by step process and try to shift your focus toward learning how to manage to things.
Report This| Share this:tethered cordThank you for sharing your story with us. You must be a very brave and strong person to have worked through this over the years. The pain and symptoms you describe seem to be consistent with your diagnosis of a tethered cord syndrome.<br /><br />One thing that I often remind patients is that us doctors don't know everything. Despite all of the modern technology and new research, there is still a lot about the human body and medicine that we can't comprehend. As hard as it may sound, try not to get too frustrated or anxious over the things your doctors can't understand or explain to you.<br /><br />With complex chronic pain problems like this, it is helpful to take things one day at a time and try not to overload yourself. Work with your doctors and providers to learn some new tools and techniques that you can use to better manage your symptoms each day. Think of this as a step by step process and try to shift your focus toward learning how to manage to things.
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TDXSP08 responded:
Lumbarcrazy i can so relate to your situation, and what Dr.Abaci said ,we have to win the small fights and every day and not worry so much about the whole war.

and as I'm Famous for saying "Quality over Quantity"


Peace
i have no small step for man, but i have 6 tires for mankind,Watch your Toes!
Report This| Share this:tethered cordLumbarcrazy i can so relate to your situation, and what Dr.Abaci said ,we have to win the small fights and every day and not worry so much about the whole war.<br /><br />and as I'm Famous for saying "Quality over Quantity"<br /><br /><br />Peace
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