Hello everyone. I am new here and still learning about threads and posting. I have Tethered
Cord Syndrome and I am 49 years old. I was diagnosed in 2008, and had a surgery to untether my cord then. Everything changed after that. My daily life has never been the same. There has always been so much pain, but in the last 6 months it has increased more than I can describe. I have also relocated to a different state. Each day I wake up with extreme pain everywhere, but now I have numbness in both legs, feet, arms and hands along with severe weakness. I also have numbness that comes and goes on one side of my face and scalp. I have an appointment with a neurosurgeon this Friday. I am new to the state, so of course I have never seen him before. I have had so many MRI'S and doctors. I try to be optimistic. But, I am feeling very depressed. I don't know how all of you do it. It feels like a tremendous chore to even make the appointment and explain to yet another doctor details about my condition. And what possible outcomes will there be ? I suppose he will suggest another surgery or refer me to pain management. It's been a tough road, but lately I'm having a hard time thinking about this being "the reality" of the rest of my life. There is so much I wanted to do and see. I have never talked to anyone who wasn't a doctor about the details of my illness. I am sorry for venting like this. I wanted to gain knowledge and friends here. People make so many ridiculous suggestions who don't know what a tethered spinal cord is. Things like you should try and go for a "short walk" daily, or volunteer for something. ..."it will make you feel better." They don't realize I would give anything to be able to do just that. Thanks for listening. I am very down about the intensity of the new symptoms and the pain. Medication hasn't been an answer yet, but maybe I haven't found the right ones. And being in a new state, I am also very nervous about being viewed as a drug seeker. Nothing could be further than the truth. I'm afraid I may not have options. This can't be the quality of my life.....

Hi everyone. I am new here and still trying to find my way around and how to post. I have Tethered Cord Syndrome and I am 49 years old. I had my last surgery in 2008 to detether my spine. I have been experiencing new and severe symptoms in the last six months. I have always had so much pain, but it is unbearable now in every single position. I also have numbness that comes and goes in my legs, feet, arms and hands. In the last month I have started to have facial numbness with it even traveling to my scalp off and on. I have an appointment with a neurosurgeon in a week. I don't know how all of you do it. I have always been a pretty optimistic person, but I am now so depressed and anxious. I am having trouble with gaining even the motivation to see this doctor. I'm in a new state so of course I have never seen him before. It always feels like I am having to explain my condition to doctors over and over. I can't handle the pain at this point and really have no quality of life. I am a wreck about what I fear may be very limited options. I suppose I will either be a candidate for another surgery or be referred for pain management. Even in this much pain, I am worried about being labeled as a "drug seeker" as well. I keep reading about that happening to people. Nothing could be further than the truth though. Medication barely takes the edge off what's happening now. I just really want to get back a little bit of my life. I want to live to see my grandchildren one day, and hopefully interact with them. I do pray...but I have to wonder....is this it ? Is it going to ever get better or just be a desperate attempt to minimize daily/24 hour pain and immobilization for the rest of my life ? Thanks for listening. I am sorry to vent so much.

Venting is very understandable. 24/7 pain is difficult to accept. I am dealing myself with 24/7 chronic pain. Acceptance of life under these terms was very difficult; but it has helped me me make necessary adjustments..

I am under the care of a Pain Management doctor. The pain medication prescribed has at least made each day tolerable. I have been fortunate because I have not been made to feel like I am a "drug seeker". Since I have had a few additional surgeries, it has been very important that my PM doctor and most of my other doctors are on staff at the same hospital.

Hopefully the appointment with the neurosurgeon goes well. Please keep in touch.


Gerry

Hello aliestgirl,

Welcome to the NeuroTalk Support Groups!