Friday June 1, 2007 10:09 PM

We had some interesting and exciting developments today, but before I get into that I've got to explain something very strange happening with me.

Jim had an appointment with Dr. Speigel at Thomas Jefferson University Hospital today. He's the ENT we're trying to get on our new "team" so that we can avoid having to go to Boston for all of this post-op stuff we still have to get through. A few weeks ago we got all of Jim's doctors' notes faxed over from Lahey Clinic. The whole packet is about 50 pages and I've been making multiple copies of them to bring to all these doctor's visits in Philadelphia. The last few days I've been noticing that my digestive system's giving me some difficulty. Now, I've got a long, long history of inflammatory bowel disease going back twenty years. Luckily it's been under pretty good control the past few years or so. But this week it's starting to kick my butt a little. I'm hungry and queasy at the same time...all sorts of weird things...but I don't think much about it...just that maybe it's time for me to find a new gastroenterologist...I haven't been in a long time and I'm probably due. But as a lot of women do they make sure that everyone else gets to the doctor and leave themselves for last. Now, I've probably read Jim's Lahey notes at least a dozen times with no problem. I read them and think...whew! Glad THAT's over. So yesterday I'm copying them in anticipation of going to this new ENT and my eye glances across the note from 2/23 when Jim's carotid artery blew out and he almost died. It said, "Pressure was applied. Code was called. Slowly thereafter he lost consciousness. As far as we know he maintained a heart rate and required emergent exploration." As I'm shuffling through the papers my eye focuses on the words, "Shortly thereafter he lost consciousness" and even though I never saw Jim bleeding...all I saw was lights flashing, sirens blaring on the floor, doctors running...now suddenly I get a vision in my head of Jim's face, blood everywhere, Jim losing consciousness, then over and over again...Jim's face, blood everywhere, Jim losing consciousness. I can't stop the vision. After all this time this never really bothered me tremendously but I'm seeing this vision while trying to go to sleep, while sitting on the train, while having dinner, while watching t.v....all the time. It's like I'm watching the video tape. And I'm thinking, why is this happening NOW? I've been FINE. It's been three months since it happened. It's like that one sentence that I've seen a dozen times suddenly opened up a mental can of worms. Then it finally dawns on me....is this some sort of post-traumatic stress thing? I'll bet it is. Too bad I had to reschedule the shrink for July.

So into this mess walks Miss Dingledong. Yes, she's back. She calls me about an hour after the video tape starts playing in my head. I've got to back up here. We've been slugging it out with Aetna because Jim's therapy is only covered for sixty days per diagnosis. His sixty days is up. Miss Dingledong's telling me in a nutshell that I can't get Jim's therapy extended beyond that, even though he needs it...I should just get the doctor to come up with a new diagnosis, but she's not guaranteeing anything. Now what kind of bullshit is that? First, I don't know what code was used in the first place. To me it's like she's telling me, "I'm thinking of a number from one to ten....guess which one it is." I thought my game playing days were done when I left junior high, but I guess not. So here she is showing up on my phone right in the middle of my post traumatic episode. All of you know me pretty well. How do you think that conversation went? Right. I don't even need to get into any details. And the first few times I reamed her out over the past few months really should have been her hint to lose my phone number.

So now comes the interesting part about Jim. Dr. Speigel and his staff were really great. They truly had a sense of wanting to help Jim and were very interested in his case. Dr. Speigel happens to know Dr. Anderson at Lahey...the guy who put the collagen on Jim's paralyzed vocal chord. So he's got some great ideas about what to do to get Jim eating again. The first thing Jim has to do is go for a study that checks the muscle strength at various parts of his throat. He's also going to help us navigate the beaurocracy at Aetna and come up with some other diagnosis code so Jim can continue his therapy. Since he operates one room over from Dr. Decidua (the maxio-facial surgeon) he'll come in while Jim's doing his teeth and stretch his throat for him. But the most happy discovery of the day is also a very strange one. So the background is....Jim's 10th cranial nerve (also known as the Vagus nerve) has been cut. This is the reason why one side of Jim's larynx (or voice box) was paralyzed and the reason why his throat muscles are week and his pharynx doesn't work right and his tongue and everything else in that area of the body doesn't work right. We've seen it on film...dead as a doorknob. Nada. Nothing. The left side of the larynx flipping away, but the right? Lays like a piece of sushi. Once Dr. Jewell at Lahey had told me that he cut the nerve I was hoping that maybe it was cut after it branched out into the many pieces of linguini that make up the structure of that nerve, but Dr. Jewell had said no- the whole thing's gone. They had to snip it right where it's coming out of the spine. I'm going to post this info that I found online that describes what functions the Vagus nerve controls in the body. Once you read this you'll understand why Jim can't eat:

Cranial Nerve X - Vagus

"Vagus" is from the Latin meaning wandering. This is a fitting name as the nerve wanders from the brainstem to the splenic flexure of the colon. The vagus nerve consists of five components with distinct functions:
Brancial motor
(special visceral efferent) Supplies the voluntary muscles of the pharynx and most of the larynx, as well as one extrinsic muscle of the tongue.
Visceral motor
(general visceral efferent) Parasympathetic innervation of the smooth muscle and glands of the pharynx, larynx, and viscera of the thorax and abdomen.
Visceral sensory
(general visceral afferent) Provides visceral sensory information from the larynx, esophagus, trachea, and abdominal and thoracic viscera, as well as the stretch receptors of the aortic arch and chemoreceptors of the aortic bodies .
General sensory
(general somatic afferent) Provides general sensory information from the skin of the back of the ear and external auditory meatus, parts of the external surface of the tympanic membrane, and the pharynx.
Special sensory
(special afferent) A very minor component of CN X. Provides taste sensation from the epiglottic region. This component will not be discussed further.


Well, Dr. Speigel scoped Jim's throat and took film. Then Dr. Speigel says, "Well, I've noticed something interesting. Your right larynx is not paralyzed." Now he plays the tape and what do you know...I'm watching, and Jim's watching....and what's that? Both sides of the larynx are moving. We saw it. It was moving back and forth and vibrating away, like nothing ever happened to it. Is it some kind of miracle? I don't know. Maybe one of the other cranial nerves picked up the slack. But at least that's one problem down....a dozen more to go.

I had a disposable digital camera up at Lahey and had taken a few pictures of Jim late in his stay. It's been sitting in my tote bag forever. I finally got the film developed. I thought I'd post one of the Jim shots here. He actually looked pretty good in this one. The first few weeks of his "vacation" he looked a LOT worse.

Monday May 28, 2007 4:56 PM

Last Wednesday Jim and I went to see Dr.'s Lombardi (the vascular surgeon) and Sobel (the GP). Dr. Lombardi was great. Dr. Sobel was about as useful as eyeglasses on a blind man.

Dr. Lombardi agreed to particpate in the tooth removal procedure. He also wants Jim to go for a scan of his arteries. He had a great sense of humor. "Let's freak out the technician," he said, knowing that what's in Jim's neck right now is a little strange. He also suggested that Jim have some genetic testing done so we can check for possible markers in his family, especially in Little Jimmy. We knew that there's a 30 percent chance that pheochromacytomas run in families because this was mentioned to us at Lahey but testing was never done and we let it drop because we had bigger problems in life at the time. Dr. Lomardi said we should talk to Dr. Sobel about how to go about doing this.

Then we saw Dr. Sobel....well, first we saw his assistant. She was useless. She kept asking us if Dr. Lombardi had cleared Jim for surgery. We kept telling her he had agreed to participate, that's all we know. It sure sounded that way to us...but she kept asking over and over. Well, call him then. Quit asking us! Then Dr. Sobel comes in. We asked him about the genetic testing. He clearly never heard of it. The only thing he's going to do for Jim is coordinate the pre-op testing. Whatever.

This Friday Jim's seeing an ENT that works at Jefferson. Remember back when Jim had the collagen put on his vocal chords and I mentioned that the ENT who did it said he should have stretched Jim's throat but didn't think about it until he had already pulled out the breathing tube? Jim's therapist had suggested Jim get that done. However, she said that not every ENT subsribes to that philosophy, and Jim shouldn't have it done until after he gets his new teeth. She said if Jim's not chewing right after the throat gets stretched it will only shrink back down and need to be done again. So if this ENT on Friday agrees with the throat stretching philosophy and agrees to work with us, we'll cancel our trip back to Lahey Clinic next week. There's no reason to keep going up there if we can assemble a good team here.

The new fight of the week is trying to get Jim's therapy extended. Aetna only pays for 60 consecutive days of therapy and then you're cut off. Jim's made great progress but he needs more therapy. So our HR department is helping us to get that resolved. I do have to give a thumbs up to Aetna in one respect, though. What do you think we had to pay out of pocket for ALL of Jim's surgeries, hospital stay, etc? Only $1500 plus dollars. That's damn good. Besides, I'd be bored in life without a good fight once in awhile.

Now on a strange note...about an hour ago Jim's sitting at his computer and feels something scratching him on the inside of his nose. He pulls out about an inch and a half long piece of black string...the kind stitches are done with. The strange thing is that nothing inside his nose was ever stitched during his surgeries. I can only imagine where this thing migrated from. Knowing him he'll probably save it.