Spine Pain

[need2bpainfree]

I'm 21 years old and I suffer from chronic spinal pain. I was born with spina bifida and at 3months I underwent a spinal surgery and was told that I would never have problems and i would live a normal life. They told my parents that the cord that was wrapped around my spine rotted off and I would not have to be labeled with spina bifida. Seventeen years later I was on the drill team and I started having these "attacks" and i would feel a retched pull from my chest to my spine. They checked my gallbladder and I had test after test and no one could find a diagnosis, so after 10 to 15 doctors visits, they told me I was experiencing anxiety attacks. I had these for the next 3 years. I was put on so many pain pills , finally we got a doctor to order a mri. We told of the history of the spina bifida each visit, but no one was concerned. The pain was so severe and it was no longer in my chest. It was a straight shot from the top of my spine all the way down, and it felt like someone had each end and was pulling as hard as they could. The MRI showed signs of a tumor, non-cancerous, and I was referred to a neurosurgeon. The tumor was attached to my spinal cord and every time I moved, it pushed up against my vertebrae. The surgeon detached the tumor and removed some of it, but could not remove it all due to the risk of paralysis. The location of the tumor is approximately at L-1. It has been a year and a half since my surgery, and I'm in as much pain as I was before. I have a tethered spine, and the tumor is attached to some nerves that were cut. My surgeon said that he could not do anything for me so he sent me to a pain management doctor who recently did steroid injections around L4 and L5 after he did a bone scan and saw that i have no cushion in between my vertebra and so my bones wobble now. I have some numbness in my legs, and my right leg tends to fall asleep a lot, and it is very painful. I can not work or go to school because I am taking 14 to 16 pills a day. They do not even make me sleepy or drowsy anymore. I have become so tolerant to them. My pain is usually a 9 on a good day. I'm on muscle relaxers which actually allow me to move now because I was having a hard time walking, but just because I can walk does not mean the pain has decreased which tends to be everyones thoughts. But when you are in this much pain everyday, you become so immune to it. You still feel every ounce of it, but you can trigger your facial expressions to be more welcoming and such. The injections did not work because the tumor blocked the medicine where it needed to go, and now he wants to try a catheter in the spine. I just am not to sure of his beliefs that the steroids are going to ease the pain. If it was inflammation, that would be one thing, but has anyone heard of any other options that I could try?

[selmaS]

I am so sorry u r in such pain....u said u had a tumor, it wasn't syringomyelia was it?....u also siad u have tethered cord.....there r surgeries for that....did they ever mention chiari malformation?
I am not a medical pro , I am like u, looking for answers. I have chiari and in my research I have come across tethered cord, syringomyelia and DDD.Spina Bifida is related to chiari II....if u do indeed have chiari or a related condition u need a specialist in chiari...a reg NS will not do!!

stop by the chiari forum here on med help- read thru the health pages on the right hand side of the screen( scroll down ).....and go to ASAP d o t o r g and the chiari institute for more info.....if u feel this could be what is going on, I suggest u get an expert. Most of us have found the need to travel to get to the right drs.

I pray u find what is going on.
keep us posted.

Godspeed
"selma"