I swear, it seems like nothing I do provides any relief. I was back in the ER on 12/11. I woke up that morning with SEVERE pain all the way down my spine, clear to my tail bone. My legs were killing me, and it was excruciating to walk or even move. I called my neurologist and they said that he was full but if I was in that much pain to go to the ER. My husband came and got me and took me right away.
It was a different pain and in more area of my spine that it has ever been. I got back in with the doctor and since my son was with us, since we have no one to watch him, my husband had to take him out and I had to stay in there alone. The doctor checked me out, ordered no tests, and just ordered pain meds and steroids. About an hour later, the doctor came back and asked if I had any relief yet. I told him that no one had been to see me since he was there, even though I was in a bed, in the hallway, right in front of the nurses station. He said he would take care of it. A couple minutes later, the nurse came, put in the IV, and gave me the medicine. A little while later, the doctor came back to check on me. I told him that I didn't feel a difference. Still no tests or imaging, he just ordered more medicine. The nurse came and gave me more and then was discharged shortly after.
I finally got out of the hospital and looked at the paperwork they gave me. The diagnosis...NECK PAIN. I just don't get it. Yes it started in my neck but this was not neck pain. I know neck pain, I have been dealing with it since 1996. It is now almost a week later and with my regular meds, the steroids, and lots of resting, I still have no relief. I know from my last images that I have 2 posterior fossa fluid collections, a syrinx that looks like it got a little bigger, a protruding disc, and degenerative disc disease. I know that I am not a doctor, but the post-op images still look like there was not enough room created during my decompression surgery.
I received steroid injections on 12/3, in my neck, to see if that was the area that was causing the problems. Well, NO RELIEF so I am assuming that they were unsuccessful. I go back to my neurologist on Friday. It is time for me to really force the issue and take this into my own hands. I cannot and will not sit back and get worse and feel this way every day. I am going to make sure that he either does some new tests, gives me a referral to a new neurosurgeon, or something. I refuse to go back to the one that did my surgery after the way I was treated.
I am to the point where I want to go in and have the complete Chiari surgery done, a shunt put in the syrinx, and have the fluid drained. I would let them do absolutely anything at this point. I would let them fuse my entire spine, replace discs, whatever it takes. This just isn't about me, I have a 4 year old son and a husband that are losing out on having a normal mother and wife because of all of this. I know that I will never be "normal" and I have to deal with this, but I don't have a single day that I feel even remotely good. I have to force myself to do pretty much anything. It isn't fair to me, my son, my husband, or anyone. All I want is some relief. Is that too much to ask for??? I see all of these success stories and it kills me to know that I am not one of them. I don't need to be completely healed, but I do need relief. I am unsure what Pain Management will do when I go back to them in a few weeks but we will see. I would even let them put a neurostimulator in if they thought it would work.
To all of you out there that are facing Chiari, Syringomyelia, or any of the issues related to them, I truly, from the bottom of my heart, hope that you feel better than I do. My goal of this blog is just to vent, help someone, or just let someone out there know that they are not alone in what they are feeling. I am unsure who is reading, I just hope that my goal is being accomplished.
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