Tuesday, July 21, 2009

Waitin' for the meds to kick in...

So many of the dear ones I know online who suffer with neurological conditions such as Chiari Malformation post on message boards or update their blogs in the wee hours of the morning.

Like me, they are up, in pain, waiting for a pill to be absorbed in the bloodstream and carried somehow to the brain and those pain receptors that need numbing, at least for a little while.

I was up at 1:15 am, two hours after I went to bed. My feet were hot and burning and I could not go back to sleep. I got a drink of water and crept into the guest room bed, debating whether to take a 5 mg of oxycodone or not.

I hate taking them in the middle of the night, since I'm allotted only 5 per day and that is never enough to cover the pain that haunts all my hours. I laid down and read some, but knowing that foot and leg pain wasn't going to do anything but intensify, I opted to go back to the kitchen for the oxy.

Back in bed, I finished a great book I've been reading, titled IceBound. This put me 2.5 hours past the time I took the oxy...and back in pain, especially at the back of my head now.

I just got up and took a 500 mg tab of acetomenophen. I know the news says it ruins your liver or kidneys or something. But that is in extra high doses. One or two tabs a day, I don't believe, will send me down the river. Though there are certainly days I'd like to make the trip!

I turned on the desk lamp which allows my eyes to adjust to the glow of the monitor, deciding to type an update here. Everything hurts, everywhere. Hopefully, I'll feel relief soon and head back in to bed, perhaps getting 2 hours of sleep to add to the 2 hours I had earlier and that should be enough.

The neighbor just left home in his log truck, climbing through the gears as he passes my house. He and I have an intimate relationship and he doesn't even know it. I don't even know his name. But I do know that he leaves every morning except Sundays at 3 am and he returns home at 5 pm.

He also starved one of his dogs to death, but that's a different story.

Yesterday, Monday, I had an appointment with my local doc. I put in a request for a motorized scooter. He told me that they are very hard to get approved, and worse so with work comp.

I said, "What about all those ads on TV that guarantee Medicare will pay for it, or the scooter is free?" and he replied, "That's the problem. It's never like that, and people come in with high expectations."

I feel a scooter would be so helpful in large stores. Later today, for example, we are planning to go to our shopping town in Oregon for a grocery run. And a Kmart run. Kmart has scooters there. The grocery store doesn't. And it's a big store. Almost every time there, I have to quit halfway through and go sit in the seats by the pharmacy and let my husband finish the shopping alone.

I suppose that it will take my work comp three years to decide on a scooter for me, since it takes them 3 months to decide on Lidoderm patches. The wheels of indecision turn slow. Oh Lord, don't let a new, national health care plan be worse than this!

I also shared with my small-town doc that I mailed a package to the specialist in Bethesda containing a CD copy of all the imaging I had done in NY in June; a list of my symptoms which takes two pages and the lines are double-spaced; and a 3 page letter of background. An e-friend told him, one night while she was at his hospital with her daughter about to have surgery, about me and my situation, and he encouraged me to contact him. I have done some research on him and like so very much what I read. He definitely is an expert in the craniocervical junction.

And I am back ready for surgery again. With things worsening, I hate to imagine me in ten years, when I'll be 67. I can't imagine I'd be ambulatory. Better to take the horse and do a little "plow reining" to get the show on the road...if I can.

Especially if there is a surgery often done for elderly patients with rheumatoid arthritis, whose spines and ligaments cannot hold up their heads either.

Our raspberry bushes are prolific this year. I pick a large, stainless-steel mixing bowl of red raspberries and some sort of smaller blackberries every day. I freeze them, sticking the baggies of fresh berries into the chest freezer in the shop. I know that all winter, I'll find pleasure in my bowl of raisin bran each morning, adorned with red morsels born of the hot summer days of July.

Well, my head is just too heavy for me to sit here any longer. Not sure if my feet will feel okay when I get back in bed, or if the back of my head will throb as I strive to find a spot on the pillow that works, but I need to get away from this position and give it a try.

God bless!

Wednesday, July 8, 2009

livin' in the city

Yes, we live in the city...at least, within the city limits. For the first time in my life, I "pay" for water. City water, that is. That bothered me a lot at first, paying for water, until I realised that everyone pays for water, even if they have a private well, they have to pay for the electric pump to get it out of the ground.

Well, of course, we have lived several places where our water was indeed free, because we had to throw a bucket down the well and bring it up on the end of a rope.

Our "city" has 3500 people in it, and they seem like good, honest folks. I like towns where there isn't any tourism stuff going on, or, at least, not much. And our town is like that. We don't have a stoplight in the town, nor is there one in our county. The county doesn't have a movie house either.

In fact, we have to drive to the next state to get to our nearest movie theater. But that sounds worse than it is....that theater is across the Columbia River and only 35 miles away. We don't go to the movies that much, anyway.

But, oh the joys of living here in the "city!"

Tonight, my husband waved me frantically to the window to look at the yearling deer in the front yard drinking from our birdbath. It so reminded me of a children's poem I wrote titled, Deer Outside My Window, and the one line states that we have so many deer in our yard, they are "drinking from my birdbath making bubbles with their noses!"

This little fella was having a nice, cool sip of water without hoofing it down the hill to the seasonal creek at the bottom of the canyon across the road. Can't say I blame him. But then, his brother or sister walked up behind him and starting to eat the leaves on a small, transplanted maple tree I've been nurturing, and then, no more thoughts of cuteness! I swung open the door and "shhh'd" at them to get the heck out of my yard.

To my credit, I didn't let the little hound dog out, he would have traumatized them!

A week or so ago, we had a nice Tom Turkey come up close to the living room window to get the crackers and dried bread we leave out there at the edge of the railing for the birds. My husband built six birdhouses this spring and set them out and about the front and back yards. We have received so much entertainment and joy from the bird families that took up residence in those houses.

Bluebirds, gold finches, and nuthatches galore! In fact, we can often look at the birdbath and see about ten little goldfinches out there watering at the same time, and know they hatches from eggs inside the houses we provided this spring. We all feel like one, big family!

Ah, the joys of city livin'!

Sunday, July 5, 2009

So, why worry about getting this dx?


First of all, there is no treatment for anyone with Collet-Sicard. It is a syndrome, a collection of symptoms that are found together when the lower brainstem is compressed.

I had hopes of the "extraction" craniocervical fusion at TCI in NY to be the answer. I knew (and still know) that an extraction upwards and then fixation would decompress those nerves within the brainstem. Alas, that surgery is not offered to me now.

I would like to seek out Dr. Henderson at Bethesda and see what he thinks. He has done numerous fusions on elderly people who have suffered cranial settling due to old age, cancer, and rheumatoid arthritis.

But, why try to get the definitive diagnosis of Collet-Sicard from Dr. Connolly who headed the collection of authors of the article I found on a Jefferson Fracture resulting in CS Syndrome?

I have a diagnosis of "glossopharyngeal damage" early after my injury, so that confirms lower brainstem damage. I have been told by my NY neurosurgeon that my C1 is compressing the brainstem. I've also learned from his neurologist that I have low lying tonsils that are also compressing the lower brainstem. So, why bother?

I guess the main reason is it is interesting, medically speaking. The Connolly article states that his patient, a 56 yr old man (in 2000) whose JF evolved into CSS is the "only" known such case recorded in medical articles dating back to the 1960's.

There IS another article, the one from China, about an 18 yr. old man, another case where a JF evolved into CSS. Again, in this article, they write that this is the only case recorded in medical history.

So...there have been two. Mine is another one to add to the list. And maybe, there are more out there, and maybe doctors should start paying more attention to patients who come into their care with fractures of the C1 arches (Jefferson Frx).

Friday, July 3, 2009

Collet-Sicard Syndrome, cont.

The symptoms that come with lower brainstem compression, aka Collet-Sicard Syndrome, are trouble with swallowing; sore throat and hoarseness; trouble with speaking certain word-sounds; abscence of gag reflex; drooling; changes in the soft palette.

Collet-Sicard can be caused by multiple myeloma, prostate cancer and cervical cancer and other diseases. It is considered rare. And two articles have been written, one in the US and one in China, about two different cases where the Jefferson Fracture evolved into Collet-Sicard. Both articles stated that "their" case was the only one reported in medical literature.

C1 (atlas) fractures are rare, they represent only 2% of spinal injuries. Rupture of ligaments is commonly seen together with C1 fractures.

There is also literature that explains that Collet-Sicard Syndrome can be linked to occipital fractures (base of the skull)...cranial settling and basilar invagination.

So, what are my symptoms that lead me to believe I have this rare syndrome?

Five years ago, I suffered a four-place atlas fracture, along with dislocation of the occipital dislocation (not a fracture, but certainly a movement of bone that can affect compression upon the brainstem).

I was diagnosed early on with "glossopharyngeal damage"....the glossopharyngeal nerve is one of the 4 cranial nerves affect in Collet-Sicard. My physiatrist recorded this in my chart after I complained of a constant sore throat, and upon examination, he found my right soft-palette to be drooping more than the left. (He mentioned that and I asked, "What does that mean?" And, he replied, "That you really hurt your right side.")

I also have my notes from my six-months of speech therapy post-injury, and find the drawings done by my speech therapist to explain the vagus nerve and the glossopharyngeal nerve, both nerves part of the ones affected in CSS.

I have reported "sore throat" in my symptom lists which I have given to doctors for the last five years, each time. I also easily experience hoarseness if I am in a "talking" situation, either on the phone or with a friend. My throat gets very painful and my voice gets gravelly. This is one of the reasons I do not like to talk on the phone.

Swallowing has been a long-time complaint of mine. When I swallow food, it enters my throat but stays at the top. Sometimes, it will regurgitate back into my mouth, but not often has that happened. The food just stays there until I eat bites of other food, which will move the first bite down, but then the latest bite again stays at the top of the esophagus. I envision that my swallowing muscles just are not working.

Sometimes it takes up to 30 minutes for the "last bite" to move down the esophagus, the food moves that slow. Today, I picked one small strawberry, ate it and it stuck in my throat for at least ten minutes.

I do not choke or gag at all when the food is stuck. I'd think I would. I have always had a very hyperactive gag reflex and would often have trouble swallowing one medium-sized pill. Now, I can swallow three or more pills at once.

I asked my local doctor to test my gag reflex last week. He did so, and it was obvious I have NO gag reflex. He pushed back his chair and remarked, "No gag reflex! That's brainstem stuff!" I live in a very small town and doctors here don't play games, they just speak plain language and don't try to hide things from you. It's refreshing.

Drooling. Yes, I do. I didn't make this connection until recently...but I remember when I was at my son's wedding last September and he motioned to me that I had some collection of "stuff" at the corners of my mouth. I mentioned it my husband and he said I often do. Now, I notice that I have to intentionally swallow saliva, as it seems that autonomic function is not working. If I am talking to someone, I really have to stop and swallow, I build up a lot of saliva in my mouth.

I just read something on the web I'd like to investigate further, it mentioned something with CSS about the sternum. That reminds me easily of a symptom I've also reported for five years, a feeling of thumping in the middle of the chest that seems to stop my breathing. I was sent to a cardiologist and wore a Holter monitor and reported many episodes, but none of them showed up on the monitor as a heart event and, except for mild mitral valve prolapse and stenosis, I have a healthy heart.

To me, during these events, it's felt like my diaphragm is stuck. I find it interesting to hear what people think is happening in their bodies, spoken in non-medical terms and with little knowledge of even the possibility of what they are describing as existing. As far as I know, only TV's Dr. House is concerned with the totality of symptoms that a patient might list. All the doctors I've visited, even the well-loved and great ones, say, "Tell my your top four complaints." I don't understand this technique at all. It might be successful in helping the doctor move patients in and out of the door, but the top four complaints could be symptoms of thousands of conditions.

Perhaps that is why we find Dr. House so intriguing. He is a brilliant diagnostician who plies his trade not because he loves patients and cares, but because it's all a big puzzle to him. Most patients I know wouldn't care if a doctor cares or not, if they just tend to the business of diagnosing, the patients would be happy indeed!

No gag reflex; drooping of right soft palette; chronic sore throat; hoarseness; drooling; difficulty with speaking certain words and sounds; symptoms in the sternum area.....

and the REASON for it all, the 4 place Jefferson Fracture, the atlanto-occipital dislocation all evolving into "severe functional cranial settling" all adds up in a clinical fashion to convince me that I am one of those very rare ones who has had her JF result in Collet-Sicard Syndrome.

continued on the next post.... "Why do I feel the need to "get" this diagnosis, and what can be done for those with this Collet-Sicard?"

Long time, no hear

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!