Okay, why haven't I posted here in almost four weeks?
Sitting at the computer sure cranks up the pain at the back of my head. It comes in stabs and waves. Sometimes, oxycodone takes it away. But not if I keep up the activity that starts it.
It's summer...the yard needs lots of watering, which I try to keep up with. We have lots of flowers and bushes, and some veggies, like corn and tomatoes and peas and beans.
If I feel good enough to post, I'm "doing"..... yard stuff and house stuff....advocating for my health and treatment.... contacting doctors and my attorney....doing a few private emails.
Life seems too huge to keep up with. I've written this many times and it only seems to continue and become larger. How I'd love to be up in a mountain cabin, captured in the moment of nature and God's creation. All of my life, I spent hours per day on the back of a horse with my brain consumed by the moment...the swing of the horse's walk or trot; the circling buzzards off in the distance; the deer as they stop grazing and stare without thoughts of rudeness; the flies that land on my horse's neck; the shadow of a crow or hawk as it glides over me and causes me to look skyward. Thoughts looping and journeying about my destination, the education of my horse, the cows that hide in draws and bushes. I often sang or recited poems. Most of my thoughts were centered on my horse, joined as we were through motion and purpose.There is no better escapism. I miss it.
Every day, I spend some time in the guest bed with my dogs, reading and napping. That is not a substitute, but it's not bad. It's pleasant...and the reward is the rest for my head and neck.
My brain isn't me. Since my injury over five years ago, I feel like my brain is a different entity, and I often refer to it like it's the main reason for my poor judgment, my fragile state, my excuses for not being up to doing things I should, or used to do.
When I cry at times when I absolutely do not want to, it's my brain's fault. Not me! I don't want to be so tender, so weak in the eyes of others. I was always strong enough to handle 1200 pound horses, so crying at times I want to appear strong, it's frustrating and I end up blaming the ol' brain. Those damaged cells that lie hidden in there, that do not regenerate or find new pathways, like I was told they would do. Tissue and ions and sparking neurons, it's all their fault. ME, I know what it is right, smart, strong, powerful. Dang Brain anyway!
I also do not post because it feels like nothing is happening. My treatment is at such a standstill and it all feels so different than the years spent when I had a goal. When I had my fight on. Now, I feel like I was jilted by a lover and I just ain't ready to get out in the dating scene again.
I am obviously done with going to NY and seeing Dr. B.
He says they will not do surgery. Fini.
I'm not seeking surgery, really. But I have a sense of having to be sure that there are no options. I'm not swallowing that hook, line and sinker just yet [that there is no help]. So, I'd like to see other surgeons, ones that might be just as knowledgeable in the skull base area, but in a position to want to help me out. There are a couple of options out there.
One is a neurosurgeon in Bethesda, MD. I was alerted to his existence by an e-friend whose daughter is there now under his care following Tethered Cord surgery. He has helped to write several studies on elderly patients who suffered cranial settling in later years, and his surgical treatment for them. This just might be "the ticket" for me.
Also, years ago, I found on the web an article about a young man with a Jefferson Fracture, left untreated. This evolved, through cranial settling, to what is known as "Collet-Sicard Syndrome," a condition suffered by some cancer and rheumatoid arthritis patients where the settling of the skull causes "lower brainstem compression."
Re-reading this article really gave me the understanding WHY most neurosurgeons do not understand me and my situation. I'll try to briefly explain:
A Jefferson Fracture of the C1 arch is a "burst" fracture. This means that it bursts outward, and never causes any damage to the spinal cord/brainstem. [The lower brainstem morphs--in name--into the spinal cord as it passes through the C1]
So, there "By His Grace" goes, stumbling from doctor to doctor over so many years, and they have probably never seen a JF...or they have seen some, but those were treated (stabilized correctly with halo vest and long term use of a rigid collar or CTO), or smaller in impact due to the milder fracture/de-stabilization, ie, no ligamentous ruptures.
These doctors, if they really care, might go to a website or medical school book and look up JF, and read that it is a burst fracture and rarely impacts the spinal cord unless pieces of bone are shown on the CT scans and have migrated to come to compress the cord. So, they dismiss BHG and tell her she is fine, her problems are emotional... "a JF cannot be causing these symptoms so you must be having anxiety or depression issues."
So, this wonderful article published by Dr. Brendon Connolly et al explains how a JF like mine, with ligamentous rupture and which had been left untreated (remember, I had no halo, no surgery, and little stabilization as I was given only a small, flexible collar and told to remove it in six weeks) , could evolve over time into cranial settling.
This narrows the foramen magnum, the "hole" in the skull through which the brainstem passes...the skull rests on the C1, the top of the spine.
In most cases, the area through the C1 is wide enough for the brainstem, in normal people. But compromise that space and that brainstem experiences pressure when the neck is flexed or hyper extended... by unrelenting bone.
Lower down in the brainstem run the cranial nerves, numbered with Roman numerals IX, X, XI, and XII.
So, voila, symptoms from the compression of these nerves give evidence that there is pressure on this part of the brainstem. I will explain what my symptoms are in a later post.
I thanked Dr. Connolly, sub voce, and began to search for him. I found that when he authored the article, he was an Army surgeon (orthopedic) not far from me, at Fort Lewis, WA. I continued my search, and found him at Fort Sill, OK, and now, he is in private practice in Florida. I have faxed him a letter. I am praying for a reply, but it has been six days now.
Here is the link to an abstract of the article:
I will close for now, and write my next entry on Collet-Sicard and as I feel it applies to me.
thanks for reading. Thanks for your prayers and friendship, always!