Well, each day, I'm thinking of you, my dear reader friend! I've been wanting so badly to write here and catch up. Some days, I actually think of clever things to write or say, a basis around which to write a blog entry. That isn't today however. My mind is a blank, but I do finally have a bit of time, so if I make a start, perhaps the words will flow.
It is a week since I returned home from New York. I haven't given you much details on my trip, so perhaps I will do some filling in now.
I flew out last Sunday, May 31. It was two days earlier than I'd planned, but dear Dr. B had called me late in the preceding week saying it would be helpful if I'd come earlier. There was someone else I needed to see, and be seen by, there in NY.
I arrived at LaGuardia to my sister's smiling face, waiting for me just as she has done two times before. I think this ritual now has become "old hat" and routine. We picked up my "on time" luggage and then went out on the curb to call our favorite taxi guy, Morris. He had brought Susan from Great Neck to LGA, and was out parked somewhere waiting for her call that I had arrived and was ready to leave.
Morris is Jamaican by birth, though he's been in New York driving cabs since the 1970's. His dreadlocks fall down to his waist and his smile and bright spirit make you feel like you have arrived home for a visit! He also knows how to drive Chiarians around and avoid bumps or slow down for turns and potholes.
We went up to our room at The Andrew Hotel in Great Neck, after saying goodbye to Morris with promises to call him for my return trip to LGA whenever that would happen. After staying at The Andrew for over five days, I can say that The Inn at Great Neck is much nicer than the Andrew. The people at the Andrew are friendly and sweet, but the room and lobby and everything else is absolutely nicer and bigger at The Inn. And they both cost the same money (TCI rate: $185 a night with tax). Hey, it's Long Island!
Monday, Susan, who had driven her mini-van down from New Hampshire the day before, carted us out to a little community of Port Washington, NY, which is only 15 or 20 minutes away from Great Neck. We felt we needed to stay closeby in case a call came from Dr. B with the time and place for me to meet the other doctor. We ate lunch at an old Irish pub called Finn McCool's, and then we parked at the water on Cow Bay, sat on the benches, walked a bit, then strolled over to a different restaurant that had outside seating over the water, and loudly sipped coffees and slurped ice cream (the first of several servings of ice cream we would have over the next several days).
Dr. B did call and I was set to see Dr. L at 12:45 pm the next day. I also called my Oregon friend, Charnel, who is there and had a Tethered Cord revision surgery done on May 22. She and her husband Mike are staying at the Variety House (I say "are" because I think, sadly, they are still there!), so we stopped by for a visit and then we all went out to dinner together at the Seven Seas Restaurant, which turned out to be a great, happy, family place to eat and Susan and I returned there several times during the week, as well. One waiter, Lazaro, thought we were stalking him!
Tuesday, we laid low in the room half the day, staying in our jammies and lounging in bed until after noon! Then we went to see Dr. L.
Wednesday was full, full, full. It started early as we asked the valet to bring Susan's van to us so we could leave. This was always frustrating to us country gals because her van was parked 12 feet away from the front door of the hotel, and she couldn't even go out to get her car herself or get something out of it, without asking the valet for the keys and then giving him a $1 tip. gggrrr~!
We left about 6 am so we could be in Planeview to have my imaging down at All County MRIs. I changed into my hospital gown and visited with the MRI tech, and I began to start, right there, feeling comfortable about having surgery. To me, this "felt right." To be in a gown and knowing that medical professionals would take care of me. I was comforted to know that if the time came for me to go for surgery, I would feel good about it.
I had an MRI of the brain, Cspine, L spine...a 3D CT of the head and neck...a CINE MRI, which shows CSF flow, at the head/neck...a regular CT of the Cspine, and xrays of my neck in flexion and extension.
Next, Susan and I flew off down the Long Island Freeway, east to North Shore Hospital to go through pre-admission. They did an EEG on me, they took down medical history, they got everything ready for me to be admitted the next morning. I was told that my surgery would be 7:30 the next morning, but to be there at 5:30 am. I knew that was not written in stone. I knew Dr. B would be making the final decision after he saw the imaging that I'd just had done at All County. But I went along with it all anyway. Blood was drawn for various testing, blood pressure taken, temperature taken....it just felt odd to be going thru it all when I knew there was a likelihood surgery would not be taking place.
Then we drove over to The Chiari Institute for my appointments with the neurologist, Dr. Shelat, and Dr. B. We had a nice time meeting people in the waiting area; one woman from Bozeman, Montana seemed so happy to meet a fellow Westerner, and me likewise. We talked with lots of people, hearing their stories, and I handed out cards to the ChiariConnectionInternational support group that I help moderate.
When I saw Dr. Shelat, I have to say, he was wonderful! I'd never seen him before, and he had a very calm manner, he was not rushing in his demeanor, which for a head-injured person is a delight! He could explain things very well. He did a full, neurological exam, had me walk down the hallways on my toes and heels, and shakily walk heel-to-toe and such. He walked by my side, holding onto my hand.
Then he sat down and began explaining things as he saw them. He told me that I'd soon have the fusion, and I could throw the CTO brace away. I'd not heard such words and I was so happy when he spoke them! Could it be? Was there hope? Throw it away? I was breathless with happiness and my heart soared!
He also explained that even though the TC surgery did allow my low-lying tonsils (not the tonsils in the throat, I had those removed in 1960, but the part of the cerebellum that herniates downward to the spinal canal in those who have Chiari Malformation) to move upward 2mm, I still had low-lying tonsils. He showed me on the fuzzy, black and white CINE imaging how the flow was very minimal as it traveled posterior (behind) to the brainstem. This is something new for me. I'd had a CINE done at UCLA in 2006 and it showed perfect flow both anterior and posterior.
Dr. Shelat feels that my problems with getting any excitement going, whether it's sadness, tenderness, laughter, etc and then the prickly feeling that goes up my neck and into my scalp, the flushing I have when that happens, and my blood pressure going up, is all related to the "chiari." He said when I get excited, the BP goes up, causing pressure inside the head, causing the tonsils to then press into the brainstem and then causing those "red flag" symptoms of brainstem compression, troubles with swallowing, breathing, etc.
That all still feels so new to me. I've never really felt like a chiari patient, even tho I found out, after my injury, that I do have low lying tonsils, even though Dr. Milhorat told me in 2007 that I "have A chiari, but do not have Chiari." Even though I am a patient at The Chiari Institute, I just never felt like I had any problems with my tonsillar herniation.
I noticed in the flexion/extension xrays that, most likely, the posterior of my C1 is fused to the back part of my skull (the occiput). There is supposed to be the width of an adult's pinky finger between the C1 and the occiput of the skull. No matter what postion my head/neck was in for the pictures, the C1 seems firmly attached to the occiput. One would think when I bent my chin forward and down, my vertebra would have unfolded in the back and the C1 would have moved away from the skull. But it does not. Perhaps the Forteo shots I've been taking daily, or the bisphosphonate treatments (those monthly IV treatments I had for 18 months) caused the bone of the C1 to fuse itself to the skull. The results can be many things. I can imagine the hole in the center of the C1 through which the brainstem (top of spinal cord) is contained, would become narrower. There are nerves between the skull and C1, so it stands to reason that those nerves are unhappy little campers right now, and have been for five years.
After seeing Dr. Shelat, we went back out to wait in the waiting area, and visited with more people who had shown up while we were gone, and with those who were still waiting to see either their neurologist or their neurosurgeon.
Finally, I heard my name being called, and it was Dr. B, so Sis and I made our way into his office. He immediately, upon my sitting down, pressed down on the top of my head and lifted up strongly. I felt no pain. He then told me that that confirmed his feelings that my C1 is creating bony union between the bone ends, and therefore, the craniocervical fusion is not for me.
I held it together, dear friends, but I don't know how. I was on the verge of crying, my voice quavered, I was so disappointed. This meant, NO stabilization! Nothing to help hold up my heavy head! Ever! I was shocked, this was not what I expected to hear at all. Dr. B showed me on the imaging where the fusion was taking place...and he drew a picture for me. But my brain was a blurry mess. I couldn't think of good questions...I couldn't contain too much. I was so thankful my sister was there to take notes and remember things the good doctor said.
I asked, "Well, can I start driving again and get rid of this CTO, and turn around like you have to in order to drive?" (I knew, in my mind, that I could not turn my head like that, I know what that does to me). Dr. B replied, "You can phase out of that CTO over months, maybe even years!" NOT what I wanted to hear!
Just because a doctor tells you you don't need the surgery you are hoping for, the one you've fought so hard to get over several years, it doesn't feel like good news, because the symptoms are still there and are still worsening. All it feels like is being left out in the cold. Alone. No surgical treatment. There is nothing that PT and trying to strengthen my neck muscles can do for me. I believe my muscles are some of the strongest ones around, they've been holding up my 25 lbs head for five years with no help from my fractured spine and my ruptured ligaments. I don't wear the CTO at home all the time, I use those neck muscles alot, but I also know that trying to do repetitive exercises, either with the arms, neck turns or bends, or in the legs, all of that is going to flare up neurological symptoms.
Dr. B said he wants me to have a lumbar puncture to check for perhaps a minor infection (I don't personally feel like I have any infection); Lupus; Lyme Disease; and many rare diseases (I don't feel like I have MS or any rare diseases, either. I know all of this is connected right to that skull base, but I'll have the test done when the script comes for it and work comp authorized it.).
He also suggested occipital injections, which is something I'm not too keen on, and he told me he did not expect them to help me, either. They might help the occipital pain I have, but they aren't going to help the whole-body (diffuse) painful weakness I have. And he suggested a trial of Diamox, which I think perhaps "could" work and would like to eventually try. Diamox helps to stabilize the spinal fluid pressure in the head.
All in all, we walked out and I felt deflated as a kids' bounce house the day after a birthday party. It was then that I did cry, and the wonderful people we'd met in the waiting room gathered around me and prayed for me. Man, that's a God thing!
Back to the hotel room and me feeling as low as whatever gets stuck to the bottom of your shoe. I called my husband to let him know: no surgery tomorrow. Coming home without treatment. Yes, it's great that my C1 is starting to create bone between the jagged ends of the fractures...but they are fusing in the wrong place and with the cranial settling I've had, nerves are compressed...things just are not right. How can it be that there is nothing to help me? I'm not getting it!
[Now, what was and is wrong with me? I had prayed for the "right" thing to happen in NY. I prayed that if the surgery was not right for me, for it to not happen. And that is what occurred. Where was my joy that my prayers were answered? Oh, I was happy not to have to go thru that extreme surgery alright, and so happy not to have the halo, but I still felt as lost as a weaned colt let back out to pasture.]
Thursday, Sis and I laid around the room almost all day. We needed it. I'd had an emotional week. And it was hard on her, as well, being my shoulder to cry on. We talked and lazily each took our showers and eventually, struggled out of our cave into the daylight to walk a couple of blocks to a lunch counter we'd found, and I ordered a sandwich, she ordered a salad. We watched the locals come in with their friends to chat over a meal or read a local paper...as this was a very New York, local's place to eat.
Poor Sis, listening to me go over and over all that Dr. B and Dr. Shelat had told me. Allowing me to pour out my fears and my tears and never hindering the natural order of grieving the loss of hope for a better quality of life.
I have to mention here something I've not mentioned before: for weeks, before going to NY, I kept thinking of writing a post here that would list all the things that could happen if the surgery were a success. I mean, the loss of certain symptoms. What would it feel like after five years of debilitating, aching weakness in every nerve cell in my body (I've heard there are a billion and I think I've felt every one of them!), to wake up from surgery, permanent hardware in place under my skin, bolted to my skull and Cspine, halo in place, and NOT feel that flu-like ache. It's like the flu times ten and add in the worst leg pain from your period that a woman has ever had... and how would it actually be to wake up and not have that?
I never felt strong enough to post. It's becoming harder and harder for me to sit for long at the computer...but I had that hazy, mental list anyway. A list of hope. Not of things I could do, but the painless way I'd feel...what would that be like?
Now, that is all gone, for good. And so I must start adjusting to what God wants. Because it was very obvious he didn't want me to have that surgery, at least, not there, or not at that time! Dr. B shut the door on surgery with him, and that hurt as though my finger was caught in the hinges!
Thursday, I also spent hours sitting on the bed, calling the airlines to negotiate my trip home ten days earlier than expected. Calling my mother, my stepmother, my sister, my family and friends and neighbors who were thinking that on that day, I was having surgery. Those calls had to be made. Cancelling nights at The Andrew. Cancelling a hotel room I'd reserved in Seattle for Karen, my e-friend and Christian sister who had offered to come take care of me during my hospital stay and in the hotel, and even planned to fly back to Seattle with me, then fly back on her own to Albany, NY, and she a very sick Chiarian, too!
Thursday night, my NY, Irish friend, Paula, called and I was fried by that time. I'd cried my heart out, I'd been on the phone til I was sick, I just wanted to crawl under the porch and lick my wounds. How sweet to hear Paula's voice on the phone, with hopes we could see each other the next day. We knew it would depend on both of ours health...Paula is a sick puppy, too.
For lunch on Friday, Sis and I walked a block to find "Francesca's," an amazing, authentic, "hole in the wall," Italian deli! I think we were the only non-Italians in the place and the food was homemade and fantastic and cheap! The owner of the place came to our table and visited with us for quite awhile, as he and I chatted about olives and olive oils (I used to manage a 150-tree olive orchard in California and he was quite knowledgeable about Mediterranean climates).
Sis and I had stuffed peppers, $2.95 each! Awesome!
Next, dear Karen showed up at 2:45 at the Great Neck train station across the street. She'd taken the train early that morning and ridden for five hours to get there! What a delight to see her smiling face beneath her broken umbrella. It was raining pretty good...Sis and I had borrowed bright purple umbrellas from The Andrew, and I felt like I was truly getting the New York experience. I never use an umbrella out West!
Karen and Sis and I fell into easy conversation as we walked over to The Andrew and then sat around in the room visiting, getting to know each other, sharing pictures, laughing. It was just what I needed. Later, we drove back to the Seven Seas for dinner, and then Karen's sister-in-law came to pick her up and take her home to her place for the weekend. It was a blessing of a time and a memory I won't forget.
5:30 am the next morning, Sis is out the door, leaving on her drive back to NH. I find dependable Morris outside the hotel lobby at 9 am to take me to LGA for my Northwest flight home, with stops in Minneapolis and Seattle. The landing in Seattle was rough and I was so glad I had my CTO vest on...and the same with the landing of the smaller, regional plane as we arrived in Yakima, WA.
I almost-literally drank in the wide-reaching vistas of the sagebrush-covered hills encircling Yakima, and spoke aloud the glories of the pine-clad foothills as we neared our house.
I was home. Things were going to work out. I still don't know how. But I went and I got back safely, and now I'm home with my husband of 36 years to discuss it all out, and figure out what comes next.
And "flow" the words most certainly did! ;-)