Monday, November 20, 2006

The Day They Cut My Wife's Head Open

This is the latest chapter in the FrankenKristin's tale. If you would like to read previous installments please visit:

Chapter 1: That's Fronkensteen!!
Chapter 1.5: Point of Clarification
Chapter 2: You Know I'm A Rather Brilliant Surgeon
Chapter 3: You Have Got To Be Kidding Me!
Chapter 4: Opinions Are Like...

Kristin was scheduled for surgery to correct her Chiari Malformation on Wednesday, September 28th, 2005. The symptoms necessitating surgery were brought on by two car accidents earlier in the year. We flew to NY on Monday and went straight to the clinic for pre-surgical testing. The surgery was to take place at North Shore University Hospital (NSUH) in Manhasset, NY which is where The Chiari Institute began, and where they perform all of their procedures. Because the hospital is in the middle of a Long Island suburb there aren’t a lot of hotels nearby. The few nearby require a 20 minute cab ride or a 40 minute bus ride.

Fortunately NSUH hosts The Variety House, an old brick house providing temporary shelter for out-of-town visitors on an as-needed basis. It wasn’t the fanciest of places but it was across the street and was free. As we made arrangements we were told that they had a room for us on the dates we were to arrive but we should know that if an “emergency case” were to arrive we might get bumped. Luckily we weren’t.

On Tuesday we visited my cousin and her new baby, which was a miserable experience for Kristin. The train and subway ride to her apartment in New Jersey took about an hour and was incredibly painful. As much as Kristin loves holding babies doing so was nearly impossible. However, she’s not one to pass up the chance to hold a baby so she made the best of it.

We returned to the Variety House that evening and began the long, sleepless night before surgery. Everything we had done for the last 8 months had led to this day. We were confident that we were making the right decision but that didn’t stop her from feeling nervous. After all, it’s not everyday that you have your head cut open. Unlike Kristin, I did manage to sleep a little bit.

During our prep the hospital staff was made it very clear that we needed to be in the admissions room NO LATER THAN 5:30am for check-in. If we were late we could lose our appointment. So, even though the hospital is across the street we got out of bed at 5:00am and headed off. To make matters worse the cafeteria wasn’t open so I COULDN’T GET ANY COFFEE!!

We were one of the first in the admitting room and were promptly told that we would be called when it was our turn. So we waited, and waited, and waited, while nearly everyone else in the waiting room was led of to the respective procedures. We sat for what seemed like an eternity. Finally, around 7:30 we were told that there was a problem with the schedule and that they might not be able to do the procedure due to an emergency surgery taking place in Dr. Milhorat’s operating room. Referring to him as "The Big Kahuna", the nurses commented to themselves that it must be a big deal as Dr. Milhorat is the Chief of Neurosurgery and practically owns the place.

Kristin and I asked how long it might take and were informed that it may be a short while or possibly several hours before they knew what would hapen. Since Kristin was going to use the time to sleep the nurse suggested I step out and grab some coffee and a paper as the cafeteria was now open. She assured us that it would be fine and that I could take my time.

When I returned with coffee and paper in hand the admissions staff said that not more than 5 minutes after I left they came to get her. She said they offered to wait but Kristin assured them I didn’t need to see her off, I would be fine. She had come this far and waited long enough, she had no interest in waiting any longer. So while I was buying my coffee she mounted the gurney and headed off to the OR. She also asked them to tell me not to stick around as it would be at least 5-7 hours before they were done and that I may as well do something with my day. The coffee and adrenaline had me too hopped up to sleep so rather than return to the Variety House I made my way to the train station and decided I’d do a little siteseeing.

If you have never been to Flushing Meadows Corona Park I highly recommend it. In 1940 it was the site of the World’s Fair and is adjacent to Shea Stadium, home of the New York Mets, and Arthur Ashe Stadium, home of the U.S. Open. Also located in Flushing Meadows Corona Park is the Queens Museum of Art. The QMA houses one of the largest collection of Tiffany Glass and also features a full scale panorama of New York City including all five boroughs. If you're ever in the neighborhood I suggest you visit.

As for the surgery, here is what happened according to the post-op report:

Posterior fossa decompression under color Doppler ultrasonography guidance consisting of a suboccipital craniotomy, C1 and partial C2 laminectomy, dural opening, microlysis of arachnoidal adhesions, bipolar shrinkage of the cerebral tonsils, expansile duraplasty implying autogeneous pericranium, and remodeling of the posterior cranial fossa with a titanium mesh/acrylic cranioplasty.

In regular terms that means they cut out a piece of her skull, and removed portions of the C1 and C2 vertebra. Using color Doppler ultrasonography to monitor cerebral spinal fluid (CSF), they burned away a portion of her cerebral tonsils until the CSF flow was restored to normal. They finished by using a section of her pericranium and a titanium plate to cover the hole in her head and create a little more room. You can watch video of a similar procedure here.

I met with Dr. Milhorat after the surgery and he stated that Kristin had “quite a Chiari”. He said that her tonsils were herniated 10cm on one side and 12cm on the other. Because of this, as well as the lack of additional space in the back of her head, her CSF flow was completely blocked. They restored the flow to normal and were confident that she would make a proper recovery. They were unable to find any sign of permanent nerve or spinal cord damage. What he could not account for were those symptoms that would be consistent with whiplash resulting from the two car accidents. He cautioned us that as she recovers from the surgery (which could take up to a year) we would still want to seek evaluation and treatment for whiplash as well.

When they had finished patching her up she was ushered into the recovery room and I was invited to see her. She looked like crap and I was told that once the anesthesia wore off she would feel like crap as well. I was also told that she wouldn't be moved to a regular room until the next day since there weren’t any available at the time. Her aunt Kathy (the nurse) was flying in that night and would be spending the next several days caring for her so that I could return home to be with the kids. Because I couldn’t stay at the hospital and there was only one room available at the Variety House, it was either share a bed with her aunt or get a hotel room. I chose the hotel, much to Kathy's relief. I did offer to sleep with one foot on the floor but she wouldn't compromise.

Kristin spent most of Thursday in a dilauded-induced haze. The hopsital staff indicated that there wasn't much for us to do until she was more awake so I offered to take Kathy into the city and show her around. It had been several years since she had been to NYC so I took her to Ground Zero and Little Italy. We met my cousin and her husband who drove us back to hospital and I spent the night sleeping in a chair next in her room. The next day I flew home leaving her in the competent care of Nurse Kathy and the staff at NSUH.


kim said...

wow what a lot you guys have been thru on this ...
you'll have to make updates every once in awhile
and i hope you have a wonderful Thanks Giving!!

heartinsanfrancisco said...

What a horrific ordeal for both of you. I hope Kristin's recovery is perfect and fast.

Your children are beautiful! Have they been tested for arnold chiari? I've mentioned before that my younger daughter has it, too. It was discovered when she was kicked in the head during a karate lesson several years ago. She is checked regularly, but has not had surgery, so reading your account of Kristin's was especially scary.

I grew up in Huntington, NY, which is not too far from Manhasset on Long Island Sound, and I've never been to most of the attractions you mentioned.

mollymcmommy said...

wow what a journey you and kristen have been through.
thats a load of staples! wow!
wish her a well recovery :)


Sophia said...

All I can really say is "Wow". What an ordeal. I'm glad you wrote it all down, and I'm glad you can find the humor in things.

I wish you guys all the best.

Sven said...

Kim, MollyMcMommy and Sophia: Thanks.

Heart: Thanks for your support. Her recovery has been neither. While she is not back to 100% it is no comparison to the way things were before surgery. Neither of our children has been evaluated. TCI said that without the presence of symptoms there really isn't a medically necessary reason. Plus we haven't found anyone in MN who really knows much about Chiari Malformation so it would be hard to trust a diagnosis.

When Kristin was being diagnosed, she had two MRIs at a local diagnostic center, both of which showed the presence of a Chiari Malformation, but in neither case was it identified or labeled. It wasn't until she underwent an additional MRI at a different diagnostic center that it was discovered. Even after the July accident, when she returned for a follow-up MRI at the original diagnostic center and TOLD THEM SHE HAD A SYMPTOMATIC CHIARI MALFORMATION, they neglected to mention it anywhere in there report. It seems most places around here either haven't heard of it or are reluctant to diagnose it. I don't know which is worse.

That notwithstanding, most doctors won't perform surgery without significant symptoms. Hopefully that will never happen to your daughter. All I can say is do your homework and learn as much as you can. WACMA is a good place to start.

Anonymous said...

i dont know either of you but i have just been diagnosed w/7mm cerebral tonsils and an irregular EEG. i hope your wife is doing well, but i was wonder if you or your wife had any words of ideas of what to do.. my headaches are constant... i have an appt for a VNG on the 18th and i am so scared. i am not even 30, and i have a 2 year old... hoping this finds you both well. thanks if you get around to reading this.