IGOR: What now, boss? A little something to eat and then join the chase?
FREDDY: No! The only hope now is to get (her) back here. If I can just find a way to relieve the pressure on (her) cerebellum...
IGOR: That sound good, boss.
FREDDY:... and equalize the imbalance in (her) cerebrospinal fluid...
IGOR: I like your style, master. How do we get (her) here?
FREDDY: There's only one way.
IGOR: I'll bet it's a doozy. *
I have mentioned several times that my wife, FrankenKristin had brain surgery last year to correct an Chiari Malformation (ACM). Fortunately the surgery went well and she is on the way to recovery. However, the last year and a half has been challenging to say the least. We have learned a lot about the health care system as well as the legal system and although most of the medical intervention she will need have been completed we will likely be fighting with our insurance company over coverage for quite some time. Since this is obviously a long story, I plan to break it up into to several installments. Hopefully I can provide a little insight and possibly share a few of the things we have learned along the way.
It all began on January 13, 2005. It was a below zero Thursday evening and Kristin was driving home from work when she was rear ended while attempting to complete a left turn. Although the police were called an accident report was not filed so my wife was left to exchange information with the other driver and work through the insurance companies. We were assured by our agent that since she was rear ended, there should be no question about liability and we would have our damages covered.
Experiencing the pain and stiffness in her neck and back that usually results from a car accident she began chiropractic treatment as well as acupuncture. While the pain in her lower back improved, increasingly she began to experience pressure in the back of her head and a sharp pain between her shoulders. Because the chiropractor was unable to generate any improvement, he ordered an MRI of her head and neck to determine the nature of the injuries. It was at that time that the radiologist first identified the existence of a ACM.
At the time Kristin did not have a regular physician so we were unable to consult with a doctor. Unfortunately the chiropractor didn't have any experience with ACM either, but he did decide not to do manual manipulations of her neck anymore. We also discussed the issue with our kids' Nurse Practitioner. However she has only seen ACM in children and did not seem to think it was of much significance, her patient's symptoms were easily managed.
Meanwhile the symptoms worsened. She began to suffer constant pressure in the back of her head, a sharp stabbing pain between her shoulder blades, vertigo and headaches. Because she was unable to learn much from those around us she did turned to the internet. After a quick Google search she found an organization called the World Arnold Chiari Malformation Association (WACMA), an organization offering advice and support to those affected by Chiari Malformation and Syringomyelia.
Now for the definition. Arnold Chiari Malformation is an uncommon, congenital anomaly in which the lower part of the cerebellum (the tonsils) protrudes down into the spinal canal. This causes tissue compression in the hindbrain, which hinders the normal flow of the cerebral spinal fluid between the brain and spinal canal. Many people with CM are asymptomatic. In adults, symptoms similar to those Kristin was experiencing are often brought on by a traumatic event such as a blow to the head or whiplash consistent with a car accident. This seemed clearly to be Kristin's case.
Through postings on a support group site Kristin received the name of a local neurosurgeon who was not a specialist in ACM, but had a good amount of experience and had successfully treated others locally. Kristin obtained a referral to see this neurosurgeon for an assessment to determine whether or not the Chiari Malformation was contributing to the worsening of symptoms.
A few weeks later we saw this neurosurgeon who, after looking at Kristin's MRI results for about 2 minutes, declared that there was no evidence of cerebellar crowding. After asking whether we had a pending lawsuit, she told us that Kristin should stop all treatment and simply wait for things to get better as she believed the injuries were simply muscular. When Kristin asked what to do if the symptoms did not improve she said, "If that's what you think will happen, that's what will happen." As you can imagine Kristin left feeling insulted and not at all informed about ACM, but hopeful that the Doctor was correct and that she would see improvement in a few weeks.
Following the local neurosurgeon's direction Kristin discontinued all treatment and waited for symptoms to improve. Not surprisingly they didn't. In fact, things got worse. By now the pressure in the back of her head was so great that she could no longer sleep on her back as her hands went numb within minutes, and found it difficult to walk up stairs, ride in a car, or hold our kids. It became clear that a second opinion was needed. Since there were no specialists locally, we searched for the next available option. What we found was that there are only a handful of people in the country who specialize in treating ACM.
After considerable research it seemed clear that the best option was to visit the doctors at The Chiari Institute (TCI) in New York , one of, if not the only facility specializing in the diagnosis and treatment of ACM/related conditions. We hoped that this would give us a definitive answer. We were also cognizent of the risk of being seen (and misdiagnosed) by a rotating cast of doctors only moderately experienced in ACM. Since it was clear that there was no cure for ACM and that surgery was the only treatment option (other than pain management) we wanted to avoid the possibility that someone might recommend surgery unless we were absolutely certain the ACM was causing her symptoms. Seeing no other alternative we sent her MRI films to TCI and waited for their direction. Upon reviewing the films TCI contacted us the next day and strongly suggested we visit them for a more extensive evaluation.
At the same time we found out that the other driver's insurance company had seized upon something Kristin said in her interview as proof that it was her fault and was therefore denying any responsibility. The case had been forwarded to a third-party arbitrator who was to make a binding determination. Unfortunately for us, the decision came down 80-20 in his favor and we were told the accident was almost solely our responsibility. Thus we could not make a claim against his insurance for any damages and would not recover the $500 deductible we paid to have our car repaired. This came as a serious blow because it was beginning to look as though this was going to cost a lot of money. Unfortunately the attorney we consulted also recommended that we drop the case. Thus we were forced to turn to our medical insurance.
Realizing that we might be faced with an emormous medical bill, we agreed that we couldn't put a price on Kristin's health, and made arrangements to fly out to New York in hopes that we might finally get some help.
Our first trip to New York, a (hopeful) visit with the doctors at TCI and a run-in with a drunk. PLUS, more fun with insurance companies.
* Dialogue courtesy of Young Frankenstein.