8/23/11, Marcus is anxious…


Me worried? Are you kidding?

8/23/11, Marcus is anxious, my 1st procedure, a myelogram, is tomorrow. He and I have a special bond. He can feel my pain and my thoughts as I can feel his. He worries as much about me as I worry about him. I reassured him I’d be okay. I am his lifeline right now.

We met with Dr. Schievink; he is our neurosurgeon, who specializes in complicated surgeries like repairing cerebral spinal fluid leaks of the spinal cord. He’s not sure why the leak I have occurred again. It could be new or the old leak opened up again, but it causes most of my problems. He said he will do his best to repair it and may have to put a shunt in to return the leaking fluid back to the spinal cord to prevent cerebral spinal fluid loss that keeps happening. Hopefully his expertise will give me my health back.

The procedure today, hopefully will demonstrate the leaks or leaks so he can repair them. It lets him see the spinal cord and the leaks more vividly. If it is possible, he’ll see where the dye comes out. It’s like looking for a needle in a haystack, but it has saved my life when he found and repaired the leaks before and it ended the dreaded and the severely painful diagnosis of trigeminal neuralgia.  Due to lack of cerebral spinal fluid, which caused the brain to drop and put weight on other aspects of my brain, I had developed trigeminal neuralgia, speech difficulties, difficulty walking and functioning. The brain is meant to float like a boat in your brain.

Trigeminal neuralgia is one the most horrible pains a person can ever tolerate. Sometimes it is not tolerable. It consumes your thought processes, your every moment, and your life. Narcotics do not relieve the pain, only anti-seizure meds can and the dose is so high, you can’t think or even remember your name, let alone remember you had a life. It’s all about getting through the moment or you are so drugged or in pain you just want to die. It is one disease that people do commit suicide to relieve it. It’s like the most severe toothache but it’s in all your teeth, usually on one side of your face. It’s like being tasered in the face constantly. The pain is electric gone wild in your face. A breeze or rain on your face causes it to get worse. You can’t eat or drink because movement is unbearable.

Thankfully, the last surgery relieved this.  Believe or not when they do this myelogram procedure for several hours, afterward, I feel almost normal because I have enough fluid in my spinal cord and floating my brain. It feels so unreal. I feel like the energizer bunny. Bob says I have a full tank. It’s a false sense of relief as it can only last so long.

Marcus has seen me with Trigeminal Neuralgia and it’s not a pretty sight. He’s seen me not talk right. My speech gets garbled. I say the wrong words. I lost forty pounds before. Once the trigeminal neuralgia was relieved, due to the stress of the trial, I gained all the weight back. I’m a stress eater.

Thankfully, by the grace of God, I got all my faculties back to be there for Marcus temporarily. I focused on him and I had a life. Painful, but I could function. It’s amazing how if you can focus your mind on what needs to be done and let it consume you, how you can handle what you need to do. After Marcus went to prison it was like everything from the leak came back. My walking deteriorated, my thought process, and my speech especially when I became tired was jumbled. The pills I have been taking these last two days have made it worse. So tomorrow is my new beginning again, hopefully.

8/23/11, I awoke at 3 AM. Fear of knowing what is to happen is worse than the fear of the unknown. The last time they didn’t give me enough Versed or any at all. It’s a drug that helps you forget all that you go through. Then you don’t have panic syndrome when you have to do it again. You can’t remember what happened even though you were awake and talking through the whole procedure. You don’t remember you head and feet feeling like they are going to blow off or feeling like you are in labor having a baby when you have no parts and no baby.

A myelogram is a procedure where they puncture you spinal cord and remove fluids; evaluate how much pressure you should have and how much cerebral spinal fluid you have circulating in your spinal cord and brain. Samples of the CSF fluid are taken and can tell whether you have an infection or if something is going on in the brain or spinal cord by what the fluid contains. In my circumstances, they will also inject a dye filled fluid to detect any leaks that will show up on the screen they use and then again on a CT scan. The myelogram shows more clearly what my situation is and they can determine possibly how to fix any leaks, their location and or any other concerns depending how well the dye works to detect the unknown.

Here at Cedars Sinai they use the Dynamic Myelogram, it details and picks up more that the normal myelogram. I think, I am not sure, but it uses more fluid, pressure, and speed.

You pray you get an experienced Radiologist, who can pierce the spinal cord in one shot and that it’s not too painful. Students leave a lot to be desired after they puncture you for the third time. Mine myelogram usually isn’t too painful depending on the meds given and the anesthesiologist knowing their job. Being a nurse, I know what drugs I want. What drugs they will give me is another thing!

Then after the myelogram, Dr. Schievink will discuss my surgical options with me and Thursday the surgery will take place. I wouldn’t be here, alive, without Dr. Schievink, I know that. Each time he has made my life better. It will never be perfect, but is more than livable now.

We shall see what’s next. Marcus will be in panic mode until it is done. Then Bob will reassure him I am fine.

Hope, Health, and Happiness,


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