It is now just over two months after my 8th surgery in less than a year decompress my spinal cord from Arachnoid Cysts which have been compressing spinal cord. I continue to have almost no feeling in my right leg other than it feeling heavy. I have lost the ability to feel hot and cold on my right leg from the waist down with one exception of a small space on my inner calf where I feel touch and slight temperature. My left leg is numb in the thigh area but mostly has feeling. I continue to have proprioception loss in both legs. What all this means is that standing and walking are extremely difficult even with assistive devices such as a Swedish Knee Cage, ankle braces, and walkers. The most frustrating part is that after all of this the amount I pain I have is unexplainable at times. I live at a pain level of 4 to 5 most days with it increasing several times during the day to about an 8 sometimes more.
Proprioception loss means I have difficulty knowing where my legs are in space which affects my ability to know the position of my legs. This affects my ability of motion and equilibrium. For example, if a person is blindfolded they can tell if the leg/ arm is moved up or down or to the right or left. They also know if their toe is up or down. With the loss of proprioception I cannot do this. Through therapy proprioception can be improved. I am currently working on this yet again. Some of the things I do is wear weights around my ankles when I walk at home. This does two things. One it helps build the muscles in my legs and hips which became very weak after my surgeries. Two it gives sensory input into my pain by on my leg and hip as well as giving it a different feeling. Another thing I do is the spell out the alphabet in the air with each foot several times a day. This also helps make connections between my legs/feet and brain. I also do many other exercises at home and at therapy to improve my muscle strength and coordination.
Along with the proprioception problems I continue to have lots of pain. My pain now appears to be more nerve pain with less spasms. My nerve pain feels like burning. My back often feels like it is on fire. So often when I walk, each step sends signals of intense burning running up the back of my leg, through my buttocks and up my back mainly on my left side with it radiating to the right side at times. There are times that even while sitting do nothing or sleeping that the intense burning sensation happens. By the end of the day I am exhausted because of the pain. I am currently taking several medications to help combat the nerve pain as well as the pain caused by my spasms. Currently I take Neurotin 700 mg three times a day for the nerve pain as well as Oxycodone 15 mg every 3 1/2 hrs. with acetaminophen 325 mg. Yet, the pain continues to be intense and out of control at times. I have already tried Lyrica, Cymbalta and amitriptyline with no real impact. The side effects of the medications were awful. The worst one was Cymbalta.
I am not sure what to do next or if there is anything out there that can help. It is frustrating and at times debilitating. All I can do is pray and ask God to protect and continue to heal me. I have gotten through each day by God’s grace even the days when I have a huge set back such as a fall. God has prevented me from having any new injuries and kept me from having to have another surgery. His love is what keeps me going each day. I am thankful He is with me. May He continue to love me and help me. My faith is sometimes weak and I want to give up, but He doesn’t let me as His presence is felt and I get a renewed push forward.