Monday, December 3, 2007

Dear readers, I'm back!!

Thank you all for your prayers, believe me, I needed each and every one of them!

Where do I start? It seems the wisest thing to do if I start at the beginning, even though the writer in me wants to avoid such cliched and over-used technique. However, starting at the beginning is just what I shall do, simply because it's easiest and I want to!

I left home very early, at 3 am on Nov. 18. I had one funny thing happen as I headed toward my gate. I approached the security area, loaded down with Aspen collar and cane, and removed my shoes and assorted accessories so that I could make it silently through the "arch." The TSA guy came up to me and said, "How are you today?" and I said cheerily, "Fine! How are you?" and he said (oddly), "Hey, I'm probably not doing any better than YOU are! I have my aches and pains."

I chuckled to myself and shook my head, wondering what brings such things forth. Did it sound good in his brain before he uttered the words? oh well....

I flew into LaGuardia with no problem, going through 2 changes of planes and guided along capably by wheelchair assistants. At LGA, waiting for my baggage to come gliding around on the turnstyle, I met the wonderful folks who offered to come pick me up. Matt and Becky, and along for company was Beth from Australia. Becky was heading into surgery the next morning to receive her fusion. I learned she is quite the horsewoman and loves them as much as I do, and her husband turned out to be one of my mainstays through my hospital experience.

They drove me straight to the Floral Park Motor Lodge, which I found to be very nice, inside and out. I was very glad to stay there and also, glad to meet "Grma Lee," the lovely member of our support group who was going to have her fusion done the same day as I would get my cord detethering.

I remember sleeping well that night, and the next morning, Grma Lee and I headed over to the hospital for presurgical testing, and then we took a cab over to our doctors' offices. I had a wonderful visit with my surgeon and came away feeling very confident that I was in excellent hands.

Nov. 20, Tuesday, was the day for my "Invasive Cervical Traction." My sister was driving down to be with me through the surgery and for a few days. Not having had the chance to be together in six years, I eagerly awaited the sound of her voice as I sat in the pre-surgical waiting room.

Imagine not seeing your sister for six years, and then you only get 30 minutes before you are taken off for the OR and traction! Still, we are so close in spirit that I felt much loved knowing she was there waiting for me.

Traction...well, for me, it wasn't that much fun. The patient is supposed to be put under anesthesia while the halo is affixed to the skull, but I came awake before the process was done. I can still remember the pain and pointing up to pin sites and crying for help and hearing, "We're almost done." In fact, that part "was" soon over and I was awake and not in too much discomfort when the doctors started the traction process. This is to test for craniocervical instability, and to prove if a craniocervical fusion would be beneficial.

The doctors kept putting on more weights until they reached 45 lbs. Most of the people I know felt a real relief of symptoms when the weight of their skull was lifted off of their Cspine and all the nerve tissue involved in that area. But I really didn't. And I had a massive amount of weight on the other end of the pulleys. I told the chief surgeon that I did not feel "Nirvana" but that I did feel "better."

The doctors conferred over the imaging on their screens while I sat upright with the halo apparatus still hooked to the 45 lbs. They used a CT machine during my traction, something new and I was told I was one of the first to have the CT during traction. Finally, the chief surgeon told me his deductions. They actually surprised me, as I learned something totally new about my condition.

He told me that when I fell from the horse and landed on my head, thereby breaking my C1 into four pieces, another thing also happened. My skull slid sideways somewhat off of my C1 and then, over time, it fused itself there. This is why the traction did not cause a Nirvana result for me, because my skull and C1 were fused together (in the wrong places) and not allowing "decompression" of nerves, even with 45 lbs. applied.

[I have done some internet research on this and I believe this must be called "Atlanto-occipital dislocation." The other words used for this occurrence are much scarier: "internal decapitation." I always knew I was blessed to be alive after the Jefferson Fracture I suffered, but this news showed another injury that very few survive! I read that 90% of people suffering the atlas/skull displacement die. Of the 10% who survive, 9% are paralyzed. I am beyond thankful!]

The surgeon continued, saying that I definitely have Tethered Cord because the MRI shows that I have an elongated brainstem, being pulled down into the spinal canal by the TC. And he said, "You do have part of your cerebellum descending into the spinal canal, about a 5.7 mm of descent from normal. You have a chiari but you do not have chiari."

I understood what he meant. That the TC had also pulled down my cerebellum, and that the tonsillar descension was due to that downward pull, not due to a small posterior fossa which is the landmark for Arnold Chiari Malformation. My tonsillar herniation was known to him as "a chiari" but did not signify that I "have chiari" or ACM.

He mentioned that these things probably are obstructing cerebral spinal fluid flow at my craniocervical junction and that the TC release surgery the next day will do me a world of good. But, he said, the fusion was something else. I do test positive for craniocervical instability, but because of the bone-fusing done by my body between the skull and C1, he was not sure how much the fusion would help. He told me they could not go into such an area and break where the fusing had been done.

He said that perhaps I would experience enough relief from the TC surgery alone that I would not want the fusion, but if I do choose to go back for the fusion, that I would see relief, but not the "Nirvana" that I might hope for.

When I heard these words uttered by so respected a surgeon, tears poured out of my eyes. Here I was, sitting with the halo and traction apparatus on, and rivers of tears flowed from both of my eyes. I wasn't sobbing or "crying," but the tears flowed forth anyway and they were NOT happy tears. The doctor removed the 45 lbs from the traction, and it felt just like he was putting 45 lbs onto the top of my head. I continued to cry as they wheeled me into ICU.

While I was in the traction, they sent a nurse out to get my sister to be with me and to experience the traction deal. However, they came back saying they couldn't find her. It turns out she was given the wrong "beeper"...and perhaps was indeed sitting right there in the waiting room waiting for me...but I guess it wasn't meant to be. When I get my pics developed, I'll insert one here.

In ICU, the tears continued to flow bigtime. I think this happened because of my brain injury and because it was all so overwhelming. They finally brought my Sis in, and that was the best! And I told her, "It's all just too much to take in."

I was supposed to be let out after ICT and spend the night in the motel, coming back to the hospital at 5:30 the next morning to be admitted for surgery. But, given my mental status, they admitted me then and I spent the night in ICU.

I will continue with the surgery story etc soon. Thanks for reading!


Caroline said...

HI, I'm so relieved and grateful that you are home and doing well. I've missed you and thought about you daily! Many prayers have gone up for your surgery and healing. I can't wait to read the rest of how your surgery went and how you are doing now.



Anonymous said...

I thought I would come over here and wish you a speedy recovery . Take it easy . Roz

lace1070 said...

Thanks for sharing and I look forward to reading more as I am closing in on my tethered cord surgery date at TCI on 2/1/08! Thanks for sharing so honestly and openly ~ Lace

One Sick Mother said...

You know, your story grows even more amazing with every new piece of information uncovered.

Internal decapitation? OMG!
And yet... you caught the horse.

To me, that single fact alonse speaks more to your values and strength than almost any of the subsequent events.

zoe said...

The weight of what the surgeon told you about your neck is clearer to me with a second reading~ and yes!~ it would have been 'too much to take.'

I am praying for you often and hoping- as you are, that another surgery won't seem needful after you are healed up. ~Oh Lord~ Bless my friend Virginia!!! inside and out~

wishing you a rainbow,