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.
TIMELINE FROM DATE OF INJURY TO PRESENT
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.