Tuesday, February 22, 2011


...the long and winding road....

As I'd written here before, I felt really good about going to Kadlec Neuroscience Center, only 2.5 hours from me. However, yesterday, I received a call letting me know they will not accept my out-of-state, workers' compensation insurance.


Used to be, I'd go crashing on the bed in the guest room and cry my eyes out, expressing and releasing my crushing disappointment yet again.

It's been almost 7 years now. Maybe I've learned. Maybe I'm jaded.

I was disappointed, but I shrugged it off, and fell back to Plan X, having exhausted over the years Plan A thru W.

I called Dr. Rod Oskouian's office in Seattle and asked if they would take my insurance. They replied that they would.

So, now my primary must re-contact my insurance case manager and ask for a new authorization, this time to Swedish Medical Center in Seattle. Then they must copy reports again and fax or mail them off to Dr. Oskouian's office. From there...hopefully I'll get a consult.

It's a six hour drive to Seattle but it's okay. I really "feel" right about surgery. I haven't felt like this in a couple of years, since I was dumped by my previous neurosurgeon.

I'll keep you posted!

Thanks, Dear Reader!

Saturday, February 5, 2011


I am constantly thinking these days of the new neurosurgeon I hope to go see...and soon! I asked my primary to refer me to Kadlec Neuroscience Center in Richland, WA. I have not heard anything about this place, not talked with anyone who has gone there, but I saw their ad, and I just had a feeling that this could be THE place.

In preparation for my first consult there, I thought I should create a timeline for the doctors, showing the high points of my medical history for the last six plus years. I thought I'd post that here.



April 4, 2004 -- injury incurred while training jumping horse. Fell onto (helmeted) head and, at emergency room, was diagnosed with 4 place fracture of the C1. I was 52.

April 4-12, 2004....hospital stay. No surgery or other treatment. Sent home with semi-rigid collar and told to return for follow up in 30 days. Also told to
remove collar in 8 weeks.

September, 2004... After being told by my neurosurgeon (no surgery had been done) that my C1 had healed "straight and fine" many times, I asked to go back to work (training horses). I was allowed back to work.

After a couple of months, however, I noticed that my symptoms were much worse after riding or working (ranch work). I also noticed I had to stay in bed for several days after a gentle horseback ride, due to the diffuse weakness, pain and nausea.

Winter, 2004... I asked to be put back on temporary partial disability and proceeded to try to work at my own pace.

Since my symptoms continued to worsen in spite of being told my C1 had healed "straight and fine," I began to wonder if I had a congenital problem that the injury had riled up. When I went online, the symptoms associated with Chiari Malformation seemed close to what I was dealing with.

April, 2005... I was seen by the Chiari expert at UCLA in CA. He told me I did not have Chiari, that I was "lucky to be alive. Get off the internet and get on with your life."

My condition continued to worsen. I was not able to do much work at all and entirely unable to enjoy hobbies or life outside of work. I began to visit with the neurosurgeon at a Chiari center in N.Y. online via email.The neurosurgeon felt that I probably had cranio-cervical instability (vis a vis a traction test he had me do at home, approved by my primary treating physician).

January, 2007.... I traveled to NY for a consult. From a fine-cut CT, the surgeon found that I still had a very large break in the C1 (3 years post injury). "You are walking around with a broken neck," he said.

From my list of symptoms, from in-office testing and from new imaging of the lower spine, he diagnosed me with occult tethered cord. He felt the injury caused the OTC to become symptomatic. It was also practice at that facility to cut/release the filum terminale (if suspected to be too tight) before their "extraction" craniocervical fusion.

November, 2007.... I traveled back to NY. I underwent the "Invasive Cervical Traction," where the skull base area is examined via CT while under 45 lbs (in my case) of traction. From this test, I was told by the chief of neurosurgery that when I suffered the Jefferson Fracture in 2004, I also had suffered dislocation of the occipital condyles (the skull broke loose from the spine/C1). I was told my skull had fused itself back but at a wrong angle, slightly down and to the right.

I also was told by this neurosurgeon that I "have A chiari but not Chiari." I understood him to mean that I have low-lying cerebellar tonsils, but not Chiari Malformation. This was confirmed later by the first neurosurgeon I saw there.

The next day, I underwent surgery for the tethered cord. During this surgery, it was found that I had 2 dural ectasias (of significant size and weeping CSF) and a very large mass of arachnoid adhesions.

According to the OR report, these were dissected to reach the filum, and the dural ectasias repaired.

The plan was set for me to return in a month to undergo the CC fusion. However, because I had mild osteoporosis, my neurosurgeon felt I should undergo 12 months of some sort of bone-enhancing" therapy to strengthen the bones before fusion.

Therefore, I underwent 6 months of pamidronate treatment (IV) at The ______ Cancer Center. Even before I had these treatments, my osteoporosis had been downgraded to moderate osteopenia.

After that, I did six months of daily injection of Forteo, again to strengthen my bones. This was prescribed by a hematologist at OHSU, where I had been referred by my local hematologist.

My hematologist finally said that he felt my bones were good enough for a fusion surgery.

June, 2009...I was scheduled for the fusion surgery in NY. However, at the time I went there, this center was experiencing some problems which ended with my surgeon no longer being allowed to perform surgery until the procedure is first approved by a hospital review board. The review board did not approve my fusion surgery. I was told that my C1 had "spontaneously healed" because of all the pamidronate treatments and I was no longer unstable and, therefore, did not need a fusion.

When I came back to WA, I went to visit my hematologist in Portland (OR). I told him what I had been told, that my C1 had "spontaneously healed." He told me that just does not happen. Non-union bones do not suddenly fuse themselves after four years.

November, 2009... I decided to seek another opinion. I went to see a neurosurgeon at a large hospital in Portland. I had many tests done there, and the neurosurgeon told me that the neurosurgical team went over my imaging. He showed me where my C1 is still non-union in 2 or 3 places. He stated they wanted me to have the fusion surgery. I thought about it for some time, but finally concluded to myself that there was something that did not quite "fit" for me and and that surgeon/facility. It might have just been "me." Whatever it was, I decided not to pursue a fusion.

From about February, 2010 until January 2011, I had made up my mind not to pursue a fusion. However, my symptoms have worsened and worsened. I began to feel once again that I would like to find a capable yet friendly neurosurgeon who would not mind giving me all the information I need about a surgery, and hopefully he would offer me a stabilization surgery.

I saw the ad for Kadlec Neuroscience Center in the Oregonian and that is why I have come for a consult today.

oh, this is not good!

I am in the depths of suffering right now. I filled my prescription yesterday for oxycontin, and this morning when I went to take it, I noticed the pills were different. I took off my glasses and read the label on the bottle: they were oxyCODONE, 15 mg. I didn't take one!

I hate to think what I would have felt like if I had taken my regular 5 mgs of oxycodone PLUS the mistaken 15 mg of oxycodone! (For those who do not know, oxycodone is "immediate release" and oxycontin is oxycodone BUT "extended release."

My usual regimen is 2 oxycontin a day, one in the AM and one at night. Then I take oxycodone throughout the day for breakthrough pain, 5 to 6 per day. This does not take care of the pain completely and some days, I feel awful rough.

But now I can see what good the oxyCONTIN does for me this morning, not having it (at the time of this writing) up to 4 hours late. Oh my! I don't feel withdrawal symptoms so much (such as chills) but I just feel the PAIN that is happening when the oxycontin is covering it up. And oh dear, not good! Now, I understand why people addicted to oxycontin break into pharmacies, quite honestly.

Addiction: this might be a good time to talk about that. No one likes to be addicted. And I do not feel I AM addicted. However, my body IS used to having it. I'm not addicted to the action of getting a glass of water and taking a pill every 3 hours. I do not feel a "high" when I take my meds, so I certainly am not addicted to that! I just am so glad that there are drugs out there that help mask this central pain because this is surely reminding me that I have some severe spinal cord pain happening!

I can't think right now of the word that is used for when your body is used to getting a certain thing (cigarettes, alcohol, coffee, soda, and yes, medication) versus addiction. I have heard over the years and have also read on medical sites that someone who is in pain, real pain, will NOT become addicted to the pain medication. Their bodies are accustomed to having the medication, but the patients themselves are not addicted to that behavior.

I always think that proof of this are the hundreds of people I know and have seen on support groups over the last 5.5 years who are so eager to get off the meds. Everyone I know with central pain wants to be off the meds, and some even go through the process of getting off of them (always having to go back to taking them, however. Short of a miraculous healing, there is nothing natural or herbal that can be done for spinal cord/brain pain. You can't meditate your way out of it).

Well, what has happened this morning is that I called the pharmacy as soon as it opened, speaking with a very kindly pharmacist with an Australian accent (don't we northerners love that accent!). He told me he was not on duty yesterday, but that he would make the switch (take back the oxycodone 15 mgs and give me back the correct oxycontin 15 mg) when I bring it in. I told him, "I live 35 miles away and I do not drive. I can't get there today. Could you have a courier bring it?"

Right now, I'm waiting for the taxi driver to bring the correct meds. Great idea they had, hiring a cab to bring it out here. I've taped the top/cap of the wrong med and put it back into its original pharmacy bag, stapling the top. This was a request from the pharmacist so they know they are getting the full 90 back.

The druggist said, "If it's any consolation, the pharmacist yesterday, his daughter was in labor having his grandchild. But I'm so sorry you've had to go through this!"

I replied: "That's okay. It's simple human error. No bad was intended. I'd hate to have to pay for every mistake I've ever made. I'll probably be just fine as soon as the right med gets here."

He said, "Yes, I will, too!"

Litigation: Of course, your mind goes to "should I call a lawyer and sue this place for this error that is causing me so much pain?" After all, it is a big, national chain of a place.

However, I'm not that kind of person. I can't take credit for it, I just am not wired that way. If I ended up in the hospital and suffering for a long time or whatever, then I'd certainly consider making someone pay the damages for their error. But, if I just suffer for one morning, and all is fine as soon as the meds arrive, I just can't even begin to consider suing anyone.

As I said to the Aussie pharmacist, "I'd hate to have to pay for every mistake I ever made!"

Bottom line: When you open a new bottle of meds, do NOT take them if they look differently. Even if the label says the right med, if the pills look even just a little bit different, don't take one! Call the pharmacy and talk to the druggist. Call your doctor if you need to. You might find that a different company is making the drug you take, and thus the pills are differently colored or shaped. If this is the case, then that is fine.

Another lesson: if this ever happens to you, if you live far from the pharmacy, then ask firmly for them to deliver the meds as soon as possible. I think they will do it, their butt and reputation are on the line. In my case, the pharmacy folks were wonderful.

Sigh...taxi is not here yet. I'm waiting!