Daily Archives: Monday, February 12, 2007
My hands hurt like hell today and I am exhausted. I have felt like throwing up all day long too. Have I mentioned that I HATE WINTER? I just want to hibernate.
I have an OB appointment on the 15th. I am not concerned about the baby’s health. I feel her moving a lot so I don’t fret about the outcome of this pregnancy.
I am however terrified of labor this time. Things are much different now being pregnant then it was with my other child. My health has had a steady decline since my daughter. Six years has passed and I feel as though I’ve aged twice that amount. Over the last six years I can’t think back at very many times where I can say I felt good and healthy. So it frightens me about giving birth this time because of pain. I worry I might not come out of it OK this time. I have to try to hold on to my faith I guess.
I am going to give some background now about my tumor. Many have wondered where it is located among other questions they’ve had. I will try to clear up the situation for you now.
I have a nerve tumor that is located in my back. The tumor is in the L5, S1 region and right next to the spine where the nerve comes out. I have lower back pain constantly. It affects my right leg too. The tumor affects the entire nerve that leads from the spine down the right leg. My leg pain is worse than the lower back pain. I have shooting, sharp pains when I walk down the right leg. (It is enough to buckle my knees and put me in tears.) The nerve also burns from my lower back down to the knee. I often have a pain that feels like someone is inside my leg twisting the nerve. OUCH!
The tumor isn’t cancer, thank God. They have no answers for me as to where it came from. “I am a very rare case,” the neurosurgeon has said. Only a few cases in the United States with my condition and they just don’t understand it completely yet.
I went in for surgery September 2005 and thought it could have been removed. When the surgeon got in there he realized it could not be removed without doing some serious damage. If he had removed it I would have lost the use of my right leg, and the use of my bowels. The reason he could not remove it was because over the years, that I fought to have a doctor figure out what it was, it grew. While it grew the nerve fibers had entangled themselves throughout the tumor making it impossible to remove without serious damage.
The pain started in 1998. The pain was sporadic for the first two years. I thought it was just a pinched nerve that with time would relieve itself. In 2000 I had become pregnant with my daughter and the pain became so troublesome that I sought out a doctor. (It helped that I finally had some sort of state health care coverage too!) I went to see Dr. D and he was a jackass. He tried to put the pain off as some sort of ailment from depression. When I got angry with him and told him that something was wrong he finally ordered an X-ray. I also mentioned to him my hair loss at this time as well. He ordered blood work to check my thyroid. It came back normal except I was anemic. (I have battled anemia most of my life from teenage years on.)
The X-ray of course came back normal. Nothing there he said. He went through my medical history and with knowing I had a severe case of shingles at the age of 12 that the pain could be coming from that. The diagnosis was post-herpetic neuralgia (PHN). He prescribed me some medicine that did alleviate some of the pain for a short while. A year had passed and I still had no answers to my hair loss and the pain in my back and leg worsened. I was eating Aleve like candy along with the medicines Dr. D had prescribed to me. Unfortunately around this time I lost my healthcare coverage. I had done without healthcare coverage for years after that.
Time passed and the problem only got worse and more symptoms appeared. My husband and I finally got some healthcare coverage back in 2003. I immediately started going to doctors to try to figure out what was going on with the new symptoms and the increasing pain. They did blood work, checked my thyroid again. They ordered X-rays and again nothing came back. I went through many doctors unpleased with the fact they didn’t seem to give a shit about my situation. They didn’t seem too concerned with finding the culprit to my problems. Most of the doctors didn’t do a damn thing. I wasted a lot of co-pays to sit in the rooms while they ordered no tests. Eventually one doctor sent me off to PT (Physical therapy.) I did that for a few months and it only made the pain even more unbearable. It also made me dislike doctors very much so on a wide scale!
In late 2004, early 2005- I had reached a point where I could not even walk anymore. It was at this time I found Dr. M. What a great doctor she was! She immediately ordered blood work to check for anemia, vitamin deficiencies and I can’t even remember what else. She also said I should have had an MRI done a long time ago and ordered me to have one done right away. The blood work shown that I was in fact lacking vitamin B-12 and that my iron was low again. The MRI of course had shown that a cyst was attached to a nerve next to my spine. Or so they thought it was a cyst.
She wasted no time and referred me over to the neurosurgeon Dr. Z. He preformed the surgery and gave me the bad news afterwards. I still think to this day I had a nervous breakdown in that hospital room after he said it could not be removed and that it was a tumor instead of a fluid filled cyst. He explained to me while I wept that he would have to send a section off to pathology to be sure if it was malignant or not. My whole world fell apart this day.
Thank God pathology came back to show it was not cancer. From there I have gotten here where I am today. I see a neurologist in a pain clinic and I was determined permanently disabled at 28. (I’ll be 29 on the 16th.) I still am unable to drive a car.
As for Dr. M I sadly miss her! She left to start her own practice that deals with eating disorders. I still have not found a doctor to replace her that has her compassion and her professionalism.
I just recently got answers to the questions I have had for a year now. I had to see a second neurologist to get the answers I wanted. Those answers were these:
It won’t turn to cancer. It will grow and probably has grown. I am looking at future surgeries if the tumor grows enough where the pain is unbearable again and pain medicines do not work. Eventually they may have no other choice but to remove the tumor and leave me without the use of my right leg and bowels due to it being so close to the spinal cord. I will most likely never go back to work because of this tumor. My other symptoms are not linked to this tumor in any way.
I still cry going over all that. I feel so damn cheated! My daughter is an active girl and I can’t do things with her that I long to do with her. No more bike riding, no more volleyball, no more dancing, and you know it is so fucking depressing to me. I have a lot to be thankful for I know. I try to think of those things. I try to remember those things. It is really hard to do though when your daughter wants to play some kick ball outside.
I tell you my life has been pretty damn depressing. I haven’t had much joy in my lifetime thus far. I can count on one hand the joys I have been blessed with. My husband, my daughter, my dad, and the child I am expecting now. The rest of it has been total shit!! That makes me so fucking angry towards God. What have I done to him?? I think he hates me.
You have any idea what it is like when most of your days you are an emotional wreck? It is very tiring….
Yeah I guess today is a bad day again for me. Thanks for stopping by to read another piece of me. It does help getting it all out.