Sunday, March 21, 2010


We have these deer in our back yard lately. The little one, last year's fawn, is running with a doe from the previous year's crop of fawns.
We've never seen a deer colored like this. She is not shedding off, and doesn't have mange or something. I know because she came right up under my window and I took photos through the glass of the window, sneaking the camera between the slats of the mini-blind. This lighter colored hair is fluffy and long.
She has this striking pink-hued hair over the middle and back part of her body. And I didn't get it on camera, but the white under her tail is amazingly white, even when compared to the white under the tail of her friend.

The front half looks just like a normal deer in this region.
We do have elk here, though have not seen any in our yard yet. This yearling almost looks like a cross between an elk and a deer, since the back part of the body is lighter than the front. I am probably way off, that probably doesn't happen. But it is fun to watch her! I'm afraid she may not last long, colored the way she is. She will stick out to predators like a neon arrow!
And we DO have predators here! A couple of weeks ago, a cougar was killed 3 houses north of us, and the newspaper is reporting a cougar hanging around town (we are at the very end of the city limits of this little, country town). Across the road from our home, there are miles of wooded canyons with rocky cliffs and dense brush. I've often thought it would make an ideal habitat for a cougar.
My feelings about cougars is this: if they are coming right into your yard, looking in your windows, hanging out under the porch to sneak a bite of your dog, then they need to be shot and killed. You can't hardly "relocate" a mt. lion, their range is 100 miles radius. The local big cats need to be "trained" to stay away from humans and homes and shooting one to do that is probably the only way to do it. The lion shot in our neighbor's yard came into a yard full of lion-hunting dogs, so confined dogs don't seem to scare them away.
But I am absolutely against killing cougars in the wild, away from town. I guess if I had a herd of sheep and one was coming in and killing the sheep, again, I'd want to shoot one. But just to go out and hunt and kill one because it is a cougar, no way. I love them so much and they are just part of nature, a sign of a healthy ecosystem.
I've only sighted 3 cougars in my life. So much of my life, I've ridden alone or with a riding partner up high in the mountains or in the desert. At other times, my horses have left their tracks on lonely plateaus or crossing canyon streams. I have watched the cliffs and rocky outcroppings for cougars, and rode for 30 years before I spotted one, and it was just a quarter mile, if that, from my home in north-central Washington state.
A few weeks later, I saw the same cat hunting a deer on a sage-blanketed hillside about a half mile from our ranch.
And, we saw one last year crossing the road in front of our car about twenty miles from our house here in south-central WA.
I love these elusive animals!

Thursday, March 18, 2010

The NSG report

I remember clearly when my old NSG in NY told me in January of 2007 that if I were in a car accident, my C1 would slice through my cord and kill me. He also told me if I fell off a horse again, I'd die. That was the day I gave up horseback riding. I never rode a horse again when I got home and still haven't.

When I sat in his office last June with my sister beside me, and he was telling me that my C1 was all healed, that bone had grown into the empty spaces in my C1 ("spontaneously healed", he wrote in the report), my sister asked if there was still a concern about my being in a car accident. He answered, "No, that has all healed, has all filled in with bone."

My sister asked that, I'm sure, because she is always so nervous driving me anywhere, feeling like she has my life in her hands. You know, the white-knuckled ones gripping the sweaty steering wheel!

When I saw Dr. R in Portland on March 8, he told me that if I fell off a horse, I would not be killed, I would not break my C1 again (how can it break again, it's still in 4 pieces, he tells me). He said I wouldn't die of a broken neck in a car wreck, either. My husband had told him what the NY NSG had said, and he'd asked the Portland NSG if he agreed with that. Dr. R was quick to disagree with the NY guy.

"Naw, that's not true!" he said.

Then, I got my hands on a copy of his report to my PTP today. I read, "She asked about cervical spine instability, I explained that the flexion extension views of her cervical spine from 11/09 did not show any evidence of instability, so I believe her chronic bone non-unions of her old fractures of C1 are not grossly unstable, but could potentially be at risk of catastrophic failure under the right conditions (e.g. MVC)[sic]."

Did he tell me that and I have forgotten it? My husband doesn't recall it either. I suppose he reported that he told me something he didn't because he was so busy. Remember, he was in surgery that day and I had to wait four hours to see him. I know all the other patients there must have backed him up late into the night and then to dictate his reports from the consults, it all probably means fatigue was a factor.

But it looms kinda dark in my mind: "catastrophic failure" under the right conditions, e g motor vehicle crash.

Catastrophic Failure of the C1. Vivid imagery indeed!

I have to admit, yesterday, I remembered the NSG saying I would not necessarily die from falling from a horse and my husband was sitting right there, so he heard it too. In my brain yesterday, that meant (I must be slow, since I was connecting the dots ten days after seeing the NSG) that I could get a horse some day! If I got better and stronger and could take care of one, I could get a broke horse and ride again!

My mind leapt from possibility to gleeful possibility. The door seemed to open into a whole new future and it included HORSES again. I'd forgotten the doctor said that, and now I could take those words out and have fun with them, glean future hopes from them. And I did so, with gusto, sharing my feelings with my husband who just remained silent as we were driving along.

This morning, I considered our fenced, back 3 acres and how great they'd be for a horse!

I got to enjoy those hopeful thoughts for about 15 hours, until I read the NSG's report and saw the words "catastrophic failure." I know my husband will not want me riding horses again because of those 2 words.

Up until now, nothing had been put into writing. Though the NSG in NY had said those words about hypothetical car accidents and horse wrecks 3 years ago, he'd never written it out.

I am leaning more and more toward having the surgery. I don't know this doctor much at all, though I did a bit more research about him online and did find he authored a paper on occipital-cranial fusions in infants. He's authored a lot of other medical articles, as well.

I perhaps don't have the faith in HIM that I had in my last nsg. Maybe that's a good thing. Having a ton of faith in the last one didn't do me a whole lot of good, frankly speaking. And I need to be having faith in God above, need to keep my priorities straight.

I'll let you know what I decide, you can be sure of that.

A friendly chat with my PTP

PTP = Primary Treating Physician aka California workman's comp speak

Today was my day to travel just a mile or two down the road to my PTP. He's been handling my care since we moved here 3 years ago. He never has really done much, or listened to any complaints. His MO is to figure out what specialist he feels I need to see and then ship me off to them.

That's okay. It's been working so far. But I do have to see him once a month to have him renew my oxycodone RX. And he's let me know that he doesn't like being the guy prescribing narcotics and that he wants me in pain management (PM).

Which I'm fine with, but I live 1.5 hours from one PM and 2.5 hours from the other (in the same building with my new neurosurgeon - NSG). And I have been in such pain and feeling so weak, it's difficult to imagine myself on the road to either of those places every two weeks or once a month, along with going to Portland for the NSG.

Before the PTP came into the room, as usual, his nurse took my blood pressure and was surprised by how low it was: 98/30. I've never known my BP to be that low. Then I remembered that right before I left my house to come to the doctor's, the back of my head started to hurt strongly and an intense burning was all over my scalp, I felt weak and then I felt pain all down my right side, especially in my right leg. It stayed with me, or the remnants of it, as I waited in the lobby at the doctor's office. Could this low reading be a sign of another autonomic event? I used to take my BP as soon as possible after I felt the familiar (I get them twice or more a day) symptoms, and my BP would be very high, one time it was 182/159 and I figured that was a couple of minutes after the peak of the "event" or experience; ie the burning prickly scalp and weakness.

[I think I explained some here about autonomic dysreflexia in a past post. Briefly, it is an interruption in the signals going up the spinal cord to the brain, when the brain needs to regulate the blood pressure and heart rate when the body responds to something shocking, surprising, tight clothes, full bladder or bowel, heightened emotions, etc. The brain needs to regulate the heart, but it never receives the signal from the spinal cord because of the "short" in the cord due to lesions found in spinal cord damage. Thus, BP races up sky high, and in some cases, death follows. This is often found in quadraplegics and paraplegics.]

I wonder now if my BP was so low because of this lack of regulation...that the BP had shot up for some reason (hence, my symptoms), and then as it came back down, it kept going down. All I know is, I have never had such a low BP reading.

When my PTP and I settled in to talking, I mentioned the low BP reading but he did not say a thing. He flipped back to my chart, saw the reading, shrugged, and continued on with his own agenda.

We discussed my visit with the NSG, and he'd received a report from him regarding my March 8 appointment with the NSG. I asked him for a copy of that report, but I didn't get to see it while we were visiting. Later, I'll let you know some of what the report stated, some of it shockingly new to me. My PTP was so happy to see that the NSG also referred me for PM.

I told him that I wanted a script for a mobility scooter. He started in with, "This is a very hard thing to get done, a lot of people have to be contacted and it is hard to get insurance to pay for one." I'd heard this liturgy before and last time, I'd let him talk me into just waiting and see how I got along without one.

However, since I am now officially 100% permanently disabled, and since my atty told me that I should ask the doctor to write a script for anything that would make my life easier, I wasn't going to put up with that today. I interrupted him, saying, "I don't care. I just want you to write a script, and I will send it to my attorney. I am not dealing with Medicare or regular insurance so perhaps my situation will be easier. I just need you to write the script."

He handed me the script.

My PTP then told me again how he doesn't want to be the guy prescribing me narcotics (even though I am on a very low dosage of oxycodone). Then he said something that really hit me.

He said,"You need to have surgery and get this over with. I believe it's interfering with your life (I said, "sure it is! I can't do anything!) and he said, "This has all become something much bigger than it should have ever been."

And...well, I let him have it.

I said, "It has NOT become something bigger than it should be. It IS big! I should be dead! This will affect me every day of my life for the rest of my life. I'm not going to get a surgery and suddenly be all fixed. I'll continue to worsen, I know that. Don't tell me that I've made this all something bigger than it should have been!"

He avoided any response to that, too.

We left friends. He's my primary care doc for things non-work injury-related, too and he's my husband's primary. I've seen him every month for 3 years now. He's a good guy.

But, I need to figure out how to get to pain mgmt, and I might need to find a new PTP. One who perhaps would be willing to prescribe my pain medication. That would solve that problem.

I can't help but figuratively shake my head when I consider that if my PTP had just read the neurosurgon's report, he would see why I should not be out on the roads when it can be avoided. But, more about that in the next post.

Friday, March 12, 2010

How it went at my last neurosurgeon appt.

On Monday, I went to Portland, OR to see my latest NSG.

I had hoped to write more carefully a report for my readers here, but have been suffering so much from the trip that I have decided to just post a pasted copy of a letter I sent to my sister. So, here you go...

You remember Dr. R the last time I saw him? He was a bit curt with me....after just talking to me for 15 minutes total, he'd said that there was no surgery he could do to help me. But he promised to look at my imaging with his colleagues. There are quite a few NSGs in that big hospital/facility.

After that initial meet-and-greet, he then had me go have some xrays done of my neck in flexion and extension. Later, I got a copy of his report from my primary and learned that after seeing the xrays, Dr. R wrote that there IS movement in the C1 when I bend or extend my neck.

Next, I had the SPECT (cervical)... and a lumbar MRI with and without contrast.

As I might have mentioned before, I set myself up mentally to expect nothing. Was hopeful for nothing. I told myself the doctor would say the imaging showed I am fine, he'd say "Why are you here wasting my time?" and then I'd go home once again feeling there was nothing to be done to help me.

We had to wait 4 hours for him. This was because Dr. R was in the OR doing an emergency surgery.

We almost went home without seeing him. My husband was so patient! But at 4 hours, to me it felt like time to head home. Then, they brought me back into the exam room (we'd been there once before when they thought the NSG was on his way, but then he wasn't able to come right then so we went back out, down to the cafe, etc, for 2 hours more)...

He came in holding my 3 pg letter I'd faxed to him last Thursday, the one posted here before this post. And he was very straight-forward, very nice and kind. He said, "You need to have screws put into your C1 and C2. You've been waiting six years and it isn't going to get any better. It's time to just go ahead and fix it."

I was shocked! I asked him if he would also put a plate into the skull base (occiput), and he said he might, that they want me to have a new CT of the skull base area and, if necessary, they will add the plate. If they add the plate, this becomes a craniocervical fusion like I've been hoping to have all these years.

I asked him how many craniocervical fusions he's done and he said, "I do them every week. I did a C4 and 5 today!" and I said, "No, not a cervical fusion, a cranio-cervical fusion." And he said, "Well, they are not seen that often...but I do one about once a month." I thought that was plenty of experience and said so.

He said he might go down to C3 with the fusion. I asked if there was bone enough in the C1 to put screws to and he said the new CT would tell them that.

I didn't go have the CT right then as he suggested, it was late and I was in so much pain. I will go back in a couple of weeks to get that done (March 22). Need to wait for the work comp to approve it anyway.

I'm not jumping on the wagon yet. He knows that. I did that at TCI but not this time, I'm going to give this a lot of consideration. I like the surgeon, I like being closer to home (2.5 hours away). I like the hospital, too, it's very well-known here in the NW. Been around a long time. Dr. R said I'd be in the hosp. 2 to 3 days. He said that the fusion would help my neck pain and would help the electrical feeling on my scalp, but it wouldn't help the swallowing problems. It would not in any way help the below the waist symptoms.

He suggested maybe I'd want to try pain management and have a lumbar injection and see if that helps my pain below the waist. However, I have since remembered that I have arachnoiditis, and had that huge mass of arachnoid adhesions at the lumbar region when they opened me up for the detethering. Mine was due to trauma, but medical articles reveal that arachnoid adhesions are usually caused by interdural injections such as pain injections and lumbar punctures. I think I'll pass.

Oh, this was a big thing to me. He was showing me the scans and such, and had the normal mid-sagittal view of the head and neck that people with chiari use to judge their condition, and I noticed the cerebellar tonsils (not tonsils in the back of your mouth) are shrunken way up from where they were! Even from last June when I had the imaging done in NY.

I told him that, that they were way up from when I had the TC surgery and he said, "Maybe that surgery helped you then."

The big thing he showed me, and he was talking so offhandedly, like "No big deal, you must know this," but he had the pic of my C1 that I always show people the big break in it...and with the mouse cursor, he flew down to the bottom right part of the C1 and said, "There is another big non-union" (meaning break) and I said, "Really?
And he still acted like no big deal (I think they are trained that way so you don't get anxious). I have seen that big gap all along, but it was never pointed out to me. I thought it must be a view of a different vertebra or something that was covering up the back part of the C1 or something. So, now I know there are at least TWO big, non-union gaps in the C1.

I have a lot to think about, obviously. Dr. R said there is nothing he can see that can be done surgically for my TC area/below the waist symptoms. He can't see any dural ectasias, which doesn't surprise me since TCI supposedly fixed them. I got to ask him about dural ectasias and he says he's dealt with them in patients with connective tissue diseases, but he's never seen any as a result of trauma. I found online that they usually ARE indicative of a conn. tiss. disease, but it says they rarely can result from trauma.

I asked him if I could try Diamox for the DEs or whatever, and he said that would be up to pain mgmt.

At any rate, I felt overwhelmed in a good way. I felt validated and treated with honor and respect. Taken seriously. and also offered hope in the prospect of a surgery, which does make sense to me, and I even could imagine it could help the TC stuff, even tho Dr. R said absolutely no, he'd be very wrong to tell me there is even a possibility.

I might send my stuff to Dr. Menezes in Iowa who is supposed to be one of the #1 skull base experts in the country.

I felt dumbfounded going home through the crazy city traffic. It's been a long time since I have talked to a NSG and had one agree to do anything for me.

And I didn't hardly cry. Thank you Jesus!

Tuesday, March 9, 2010

Letter to my neurosurgeon...

Last Thursday, I faxed a 3 page letter to my new neurosurgeon. I knew I'd be seeing him on Monday, March 8, and I knew there were a few things that I wanted him to know up front, when he would be considering the new imaging done a few weeks ago, the lumbar MRI and the cervical SPECT scan.

Here is the text of that letter, with my doctor's name removed for his privacy.

March 2, 2010

Dear Dr.____,

I came to OHSU and had the SPECT scan and lumbar MRI done on Monday, Feb. 22. I had to wait for authorization from my work comp insurance company, but finally got it done.
Will you be letting me know the results of this imaging?

I wanted to call your attention to one thing I was unable to share with you at our last meeting. It may be of value when assessing the lumbar MRIs. My OR report from the tethered cord surgery at North Shore Hospital in NY stated, as I recall, that they encountered 2 or 3 dural ectasias when they opened me up for the detethering. One was said to be "of significant size" and they were "weeping" CSF. The report stated that the ectasias were "repaired." I've often wondered if this is possibly part of the cause of my continuing "below the waist" pain and weakened, painful legs and feet.

I also want to mention again my swallowing problems. This is a continual problem. Several times a day when I am eating, my food does not "go down." Not every time I eat, but several times a day, each day. I have chronicled and reported this problem to doctors for about five years. I was sent to an ENT who pronounced that my problem is neurological, not structural. I have been told, in the past, that this is a symptom of lower cranial nerve dysfunction.

What happens: I take a bite and swallow it naturally. Most of the time, this event is less severe in that I notice the food going very slowly all the way down my esophagus. I take notice of this, and wait for it to go "down" before taking the next bite. This is slightly painful or uncomfortable. I can wait for 30 minutes or longer for the last bite that I've taken, after I stop eating, to finally go all the way down and my esophagus seem to be clear. I am used to that feeling of food stuck in my esophagus most of the time, but not all, since I've lived with it for so long.

A couple of times a week, this event is much worse. I take a bite, but the food does not go down, it completely stops at the top of my esophagus. I don't notice it at first and I keep taking bite after bite, expecting, as usual, that one bite will push down the previous bite.

The food all then adds up into what I guess is called a bolus. I do NOT gag or choke or regurgitate the bolus. I do not feel any natural reflexes to do anything about it, except to wait while it slowly, painfully, eventually slides down the esophagus. This can take a very long time, like a minute. One time, I nearly passed out from this plug of food, my vision narrowed to where my vision was blacked out, but then it seemed like the food went down and I was okay.
I don't panic about it, but it does seem to block my breathing through my mouth. What is hard for me to understand is, why don't I gag on this? Why aren't I choking?

I know you tested my gag reflex and reported that it is normal. So maybe it's something different that is absent when this happens, but I really do not have any automatic reaction to the plug of food at the top of my esophagus.

This is only one of, and the most severe, the symptoms tied into, possibly, lower cranial nerve dysfunction. I also have problems, such as with taste (one day the food tastes wonderful, the next day, same food, seems tasteless. Food often seems tasteless to me). I also at times have an inordinate amount of saliva and find myself drooling from the sides of my mouth, this has presented itself more noticeably within the last year.

I have had a sleep study, maybe 5 years ago, which stated that I have too many "unexplained arousals" when I sleep. I do know that I wake up many, many times at night, not fully awake, but aware of my surroundings. One time recently, I woke up, looked at the bedside clock, went back to sleep, woke up again, looked at the clock thinking it had been awhile since I'd last looked, and it was still within the same minute, and this happened again, so during one minute I had awakened at least 3 times. I often wake up with my body automatically "gasping" for air, and it seems that I have breathed out but not taken in a breath until my body reacted and gasped for one. This symptom also has been with me for five years or so.

Beyond painful weakness in my extremities (which is always with me), and pain at the back of the head, there is one MAIN symptom which concerns me. Again, I've had this since my injury April 9, 2004. It is:

This occurs several times a day, every day, throughout the day. Many things set it off. Being too hot or flushed. A shocking realization of something new to me. Something makes me really laugh, even just inside. Crying. Tight clothing. Getting over-tired. Doing something that is too much for me. A full bladder or bowel. Many things, but there is always a trigger...

I begin to feel flushed above the site of my injury (C1), my scalp feels prickly, painfully so. My hair stands on end and is painful to the touch. I start to really sweat all over my head, I start to get a headache, I start to feel faint. I become even more painful all over my body, aching especially in the palms of my hands and my fingertips hurt. My feet become very painful. And my blood pressure really goes up. I have checked my BP at these times, just out of curiosity, and found it to be 182/152 and up. (My normal is 120/70 or less).

This is a symptom that keeps me from being in a group or crowd of people. It inhibits my participation in life in many ways. And it has been with me since right after I got hurt.
Thank you for reading this far. To summarize, my concerns are:
1.) Problems with swallowing
Since this seems to be worsening, I am wondering if this is due to present compression of some sort, or just from the damage done six years ago. Will it continue to get worse?

2) The "problems with my blood pressure/painful scalp/feeling faint/headache/diffuse pain in body and hands and feet, etc"..... I wish I had a name for this, for one thing. I'd like to know, if possible, why it occurs and if it is something that will worsen or cause worse results in the future.

3) I wanted to let you know about the dural ectasias that had been found in 2007 when they did the detethering.
I am anxious to hear the results of the latest imaging.
Thank you

Saturday, March 6, 2010

Appt scheduled with NSG

[Among those in the Chiari (and related disorders) circle, we use a lot of abbreviations since everyone is weak and tired, in pain and the computer doesn't help much! NSG is shorthand for "neurosurgeon."]

I will be going back to Portland, OR on Monday, March 8, to see my neurosurgeon and get the results of the SPECT scan and the lumbar MRIs. I am prepared to hear that it shows nothing and there is nothing that can be done. I have been through so much with so many NSGs that I have become jaded, and in order to protect myself from disappointment and grief, I must prepare myself to hear that it's all been a waste of time and there is no help, not even: "We see how badly you are damaged but there's nothing we can do."

I thought I'd post here how much the SPECT scan cost my insurance company. $2885. The Lumbar MRI with and without constrast was $973. Sometimes, it helps to know the ballpark of what a test costs, so I've included that here.

I'll let you know what I find out on Monday.

Thanks for listening!

Oh what a dream by Bryan Cole

An e-friend of mine, Bryan Cole, posted on the message board for Chiari Connection International yesterday, this account of a dream he had recently. I loved it and asked if I could use it. Bryan and I got to know each other through email about five years ago when we both noticed that we have "horse" in our usernames on the support group. He tells his story so well...he has endured a lot of suffering throughout his life and his faith comes through in this tale.


Most all my life I've dealt with a Congenital Defect called ChiariMalformation things really began snowballing at age 13

Before that, Iplayed ball with my brother and friends but by the time I was 17, I wasn't able to do much at all. My mom had taken me to Dr's. and they ran test after test finding nothing. Then we were sent to a Neurosurgeon (Emil L.Weber) and he assured my mom he would find my problem. He did and did the surgery which helped me very much but he also said I would have limitations and he was right.

I spent 30 years working in the Pizza business, 20 years with one man, and 10 years with my own business .I also began working and eventually training Thoroughbred race horses. This began when I was a child. My Grandparents did that for a living.It was very hard work but I loved the sport.

I have never been blessed with the best of health but I have been blessed with the best family and friends a person could have. My Health began getting very bad again in 1998. I had MRI's done and the results weren't good. I have a lot of spinal cord damage due to a cyst in my spinal cord; this condition is known as Syringomyelia .

I also have a condition known as Basilar Invagination which is flattening the Medulla of the Brain Stem. I had 2 surgeries in 2009, they have helped me some but I still have a hard time walking and according to my Drs. I always will. My dad died in January '09 two weeks before my first surgery in '09. He had been very sick. He was always there for me when I needed someone to go with me to run my horses. He also liked the horses. Of course he always gave me advice which usually led to a difference in opinion.

I began going to Church with my mom and dad several months before my dad died. It is a small Church called St. Mathews. There are very good people there.

Sorry for this being so long but here is the dream part. Last night as usual I had a hard time sleeping but finally it happpened. It is very unusual for me to dream but I did and it was so real. There I was with a barn full of horses then my dad showed up with a friend of his "Snooky." I told my dad I can't take care of all these horses; he said "Son where we are right now you can do anything and you won't hurt at all."

Then I began recognizing many more people ,friends and relatives. My Grandparents were there with horses. Dad was right. I lifted feed and hay, took care of the horses and there was no pain. Then I looked at the Clock it was 4:17 AM and I am wide awake.

I never had a dream that seemed so real. I began thinking about that dream. Everyone in my dream had passed away and most were in very bad shape when they left this world. There is no doubt in my mind that the place I dreamed of was Heaven and I know when I die I want to go to that place where everyone is healthy again.


Bryan (Indiana)Surgery for Chiari in 1974 at age 17 which I've always considered a success even though Ive always had problems.I knew little to nothing about Chiari until May 2006. Revision done at TCI in Jan.2009.