Wednesday, August 30, 2006

You Have Got To Be Kidding Me!

"I busted a mirror and got Seven years bad luck but my lawyer thinks he can get it down to Five."

Steven Wright

The is the fourth installment in the tale of FrankenKristin's brain.

If you would like to catch up, read:
Ch. 1 - That's Fronkensteen!!
Ch.1.5 - Point of Clarification
Ch. 2 - You Know, I'm A Rather Brilliant Surgeon.

It is now the end of June 2005 and we are back from New York and our visit to The Chiari Institute. It has been almost six months since Kristin had her car accident and she has yet to have a pain free day. While she has found some relief from the low back pain, the symptoms in her head, neck and shoulders continue to get worse. She has trouble lifting anything heavier than a half gallon of milk, is experiencing almost non-stop numbness and tingling in her hands, has constant pressure in the back of head and regularly feels as though she has a knife stuck in her back.

Where she used to climb dozens of flights of stairs at work rather than take the elevator, she is now unable to climb even one flight with out stopping to catch her breath. Not only that but she found it increasingly difficult to ride in a car or lie on her back. She had taken to wearing a collar during the day in order to provide support to her head and bought a special pillow that follows the contour of her head and neck. Helpful, but certainly no remedy.

As for medical intervention, she has tried chiropractic, acupuncture, physical therapy, pain killers, pain killers, muscle relaxers, yoga, and myofascial massage therapy. Following the local neurosurgeon’s advice she even discontinued all treatment for a few weeks, but not surprisingly, things continued to get worse. Over the last six months she had an average of three medical appointments per week. She had six MRIs, a CT scan and three sets of X-rays. She had been poked, prodded, manually manipulated, and attempted all manner of stretching, healing, and strengthening exercises. About the only things she hadn’t tried were shamanism and faith healing.

At the Chiari Institute, we finally found what we hoped was an answer, and a solution. They acknowledged that, while some of what she is experience is typical of a car accident, her symptoms are clearly exacerbated by the Chiari and may not be resolved if that is not addressed. Unfortunately we had to fly halfway across the country in order to find someone competent enough to figure that out and it looked like we would be making several more trips.

At this point you may be saying to yourself, “My goodness, that’s terrible,” or “Oh my, how could it get any worse,” or even, “Stop you’re bitching, it’s not that bad! People get in car accidents everyday, at least you’re not dead”. You wouldn’t be alone; we said those things as well.

Then came July 23rd, 2005. The day started out like any other, routine events throughout the day kept us busy and that evening we had plans to attend a wedding reception for a friend and then stop off at a going away party for a couple of friends who were leaving to spend two years teaching in Tanzania. All in all, we were having a great night, eating, laughing, visiting with friends and singing Karaoke. After the going away party, we said our goodbyes, got in the car and headed for home. Just two blocks from the party, we were stopped at an intersection in NordEast Minneapolis waiting for the light to turn from red to green.

That’s when it hit us. A late model blue Eagle Talon, to be exact. Right square in the back of our car.

The force of the impact pushed our car into the middle of the intersection. Thank God there wasn’t any opposing traffic or I would likely not be writing this. The other car was traveling at least 45-50 per hour, much faster that the posted 30mph speed limit. Based on the lack of skid marks it was clear he made not attempt to stop.

Not only that, but it turns out he didn’t own the car, did not have a license and was drunk. We found out several weeks later that his BAC was .16, almost twice the legal limit in MN. Sadly he had two passengers in his vehicle as well, none of them were wearing safety belts.

Because the crash was only two blocks from where we had just been several of our friends heard the crash and came running to help. At the time I was more startled than anything else. Kristin however, was a mess. The impact caused her head and neck pain to go from bad to excruciating. She immediately experienced stabbing pain in her ears, blurred vision and could hardly move. When the medical responders arrived I informed them of her situation and they insisted she be transported to the Emergency Room for evaluation.

They moved her from the car onto a backboard and put her in the ambulance. Even though she repeated over and over and over that she could not lie on her back because it was too painful they refused to allow her any assistance until she arrive at the hospital. To make matters worse she was transported in the same vehicle as the driver of the other car. And they refused to let me accompany her. I had not yet determined whether my car was still drivable and yet they insisted I find my own transportation to the hospital.

Four hours and a shot of morphine later (for her, not me), we were sent home after being told that the X-Rays revealed no fractures. They did not address the Chiari.

As a result of the second accident her symptoms had gotten so bad that she spent hours in bed or on the couch because she couldn’t move without pain. The drugs didn't help. Before this incident she still had reservations about surgery, primarily due to the cost. After informing The Chiari Institute of the latest developments, and with what she was experiencing now, there was no question we would be going to New York. Even if I had to sell plasma or turn tricks to pay for it.

In fact, September 28th couldn't come soon enough.

Monday, August 21, 2006

You Know I'm a Rather Brilliant Surgeon

Freddy: You know, I'm a rather brilliant surgeon. Perhaps I can help you with that hump.

Igor: What hump?

This is Chapter 2 of the continuing saga of FrankenKristin’s brain. If you wish, you may read Chapter 1 and Chapter 1.5.

Arnold Chiari Malformation (ACM) is an uncommon, congenital anomaly in which the lower part of the cerebellum protrudes down into the spinal canal. This causes tissue compression, which hinders the normal flow of the cerebral spinal fluid (CSF). It was first identified by Austrian pathologist Hans Chiari in 1891.

Although ACM is congenital, many people are asymptomatic. In many adults with ACM symptoms are often brought on by trauma such as whiplash and can have wide-ranging severity with only subtle neurological signs, or cause complete incapacitation due to extreme headache and cervical pain, vertigo, ataxia, visual disturbances and diminished sensation. Studies are also beginning to indicate an overlap between ACM symptoms and those attributed to Fibromyalgia and Chronic Fatigue Syndrome. The difference between them being the presence of tonsillar herniation and interruption of CSF flow. Unfortunately there is no cure for ACM, and the only treatment is surgery. The most common procedure is Posterior Fossa Decompression whereby a small area of the bone at the base of the skull is removed to enlarge the posterior fossa. In some cases, the cerebellar tonsils are shrunk using an electrocautery to restore normal CSF flow.

The question many people (including family, friends and our medical insurance company) asked was why we needed to go all the way New York for evaluation. After all, there are plenty of other neurosurgeons in MN, plus the world renowned Mayo Clinic is just down the road. We asked ourselves the same question.

Our decision to go to The Chiari Institute was based on the fact that we couldn’t afford to waste our time and money going from one neurosurgeon to another (local or otherwise) with only marginal experience in this area. We wanted to know for sure whether or not the ACM was the source of the problem, due to Kristin's desire to avoid surgery unless it was truly necessary. We were clearly looking for the best possible treatment options and we wanted to avoid the possibility of a less experienced doctor recommending a treatment protocol that would not address the problem.

Our research also showed that The Chiari Institute is the world's first comprehensive, multidisciplinary center for the management of patients suffering from Chiari Malformation. The surgeons at the Institute specialize in Chiari and have more experience with this condition than any other surgeons in the country. Beucause there is no standardized surgical method for ACM, most surgeons tend to develop a method that works for them and use it consistently for all their Chiari surgeries, regardless of the presenting physiology. The doctors at TCI have developed a technique using Intraoperative Color Doppler Ultrasonography, a method used in the past to monitor blood flow during aneurysm surgeries. The technology was adapted to measure the flow of cerebral spinal fluid during decompression surgeries thus allowing the surgeon to tailor each surgery according to patient-specific variables.

The procedures used by TCI reduces the additional costs that are often associated with complications, corrections, and/or multiple surgeries. In fact over half of the surgeries performed at TCI are revisions of failed surgeries performed elsewhere. Dozens of which were initially performed at some of the most prominent medical institutions in the United States.

So off we went. Neither of us had been to New York, and since I was finished with school for the year, we decided to make a vacation out of it. We spent a weekend in Manhattan with my cousin and her husband, who’ve lived in NY for years, acting as our tour guides. We visited the Brooklyn Bridge, The Statue of Liberty, Ground Zero, St. Partick’s Cathedral, and St. Paul's Chapel. We took in a Yankees game, had dinner at a fancy restaurant, pizza at the oldest pizza parlor in the US, and cannoli at a NY institution. In addition to riding the subway all over town we walked about 8 miles that the weekend.

On Monday we made our way to Great Neck and The Chiari Institute. Although we brought along an armload of films and test results Kristin still spent the better part of a morning undergoing additional X-Rays, CT Scans and a cineMRI designed not only to depict the inside of her head but to also measure the flow of cerebrospinal fluid.

The next day we found ourselves in the lobby at TCI waiting, and waiting, for our evaluation. While they pride themselves on quality of care, by giving each patient as much time as they need, the wait time can often be excruciating. We finally met with Dr. Mora who completed a patient history, and a detailed neurological exam. Although he was thorough, and helpful, he was simply setting the stage for Dr. Bolognese, one of two surgeons at TCI. Dr. Bolognese, along with Dr. Milhorat, perform nearly 300 surgeries a year. In the afternoon Dr. B. is available for consultation and evaluation. Being one of the foremost experts in Chiari, we eagerly awaited Dr. B’s opinion, hoping he would give us a definitive answer.

When the door to our exam room finally opened, he strode in freshly scrubbed, chart in hand. Without even introducing himself, he slammed the chart on the table and in a thick Italian accent declared, “There is no way in hell your symptoms are not caused by this Chiari.” Over the next hour he dissected the test results, explained the reason for the symptoms, and outlined the prognosis. When we asked how the surgeon we saw in MN could have looked at the very same films and determined that the Chiari was asymptomatic he responded, “When you’re an expert in one thing, it means you suck at everything else. She probably sees one or two Chiaris per month, I do 4 surgeries a week.”

Ultimately, he determined that although Kristin’s symptoms were significant, she was not an emergency case. While she was a candidate for surgery, her need was not immediate and thus he left the decision up to her. However, he did say that if she decided against surgery, her current state would be her new baseline and that over time she would most likely get progressively worse. While the prospect of surgery was scary, it was a relief to know that there might actually be hope for improvement.

So we came home with what we believed was the definitive answer we were looking for. Unfortunately our auto and medical insurance companies were not as easily convinced. Not only did we have a major decision to make regarding the surgery but we were also facing an uphill battle in our attempt to get coverage. Nonetheless, Kristin called a few days later and scheduled her procedure for September, the soonest available date, and we began to plead our case with both insurance companies.

Tuesday, August 15, 2006

Point of Clarification

As I continue with the story of my wife’s brain I want to address something that has come up a few times in the comments section of the previous post regarding the accident, our attorney, and the arbitration hearing.

On the night of the accident, police responded to the call, and assisted in directing traffic in order for Kristin to turn her car around because the impact had caused her to spin 180 degrees. Once she cleared the intersection, the officer indicted that an accident report wasn’t necessary because no one needed immediate medical care and both parties agreed to exchange insurance information. Unfortunately this left her without an objective report and no documented witnesses. As a result, when it came time to report the facts to the adjustors it became her word against his.

For reasons still unknown to us, his company denied all responsibility for the accident so the case was sent to an third party arbitrator to determine the level of fault. This is common practice in Minnesota when the two parties disagree. At the same time we had contacted an attorney, as a safeguard, in the event we needed one, but at the time we had no plans to move forward with litigation. The attorney indicated that we should wait for the results of the arbitration between the insurance companies before moving ahead with any legal action. Again, common practice.

When the arbitrator came back with an 80-20 judgement in his favor, our insurance company was bound by that decision, and therefore was unwilling to pay for anything beyond what is provided by our no fault coverage ($20,000). They also refused to refund our $500 deductible on the car repairs. Since the decision was so lopsided against us, and we were facing a fairly uncertain medical future, the attorney stated that it would be nearly impossible to make any claim against the other driver or his insurance company. He advised us against proceeding with legal action, which at the time was a wise decision.

I think it will become clear as we move forward with the story, that our attorney is perhaps one of the few reliable people in our corner and has since reopened the case. For the last few days Kristin and I have been reviewing a memorandum written by him detailing the facts of our case and outlining our claim against the other driver, his insurance company and ours. In fact he has indicated several times that he is willing to file suit if need be. And no, Nikki, we are not paying him a dime unless we receive a settlement.

So the lessons thus far are:

*Always call the police and be sure they file an accident report. It is essential that the facts are documented at the time of the accident, because, as I think is the case with the other driver, memories change over time. Also, be sure you have witnesses.

* Never admit any responsibility, even if it is your fault, when talking to the other party or their insurance company. Kristin and I have disagreed on this and had many “discussions” about it at the time. She is a decent, reasoned and rational person, who tries to see things from the most objective perspective. And unfortunately that is simply not the way the insurance game works. I believe, in her attempted to find the truest understanding of the facts she may have given away something that led the other insurance company, and subsequently the arbitrator, to rule against us.

Finally, I want to say thanks for the kindness and support you have shown, through your comments and simply by reading these posts. I welcome the questions as well. I am finding that the more I tell this tale the more there is to tell and I inadvertently leave out essential pieces. So please ask away.

Thursday, August 03, 2006

That's Fronkonsteen!!

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.


Part Two:
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.