Friday, May 22, 2009

Quaking and Shaking With Good Results

On Tuesday we flew to Los Angeles to visit with Jules's doctor. Jules has an intracranicular schwannoma, otherwise known as an acoustic neuroma, also known as a benign, operable brain tumor that normally presents as a vestibular schwannoma, but in his case doesn't, because Jules is a different kind of kid. Period. The words "benign" and "operable" are what make it possible for me to keep breathing.

Now why would we travel all the way from San Antonio to Los Angeles to see a doctor? Don't we have doctors here, you ask? Yes, we do. And we saw several of them. They said:

1. your son has a brain tumor
2. if you had caught it sooner we could have saved the hearing in his right ear
3. he has a genetic disorder called neurofibromatosis type II
3. he will likely develop more tumors and could end up completely deaf with facial paralysis
4. he will possibly need spinal surgery
5. we need to do surgery to remove the existing tumor....let's get the ball rolling. we don't want to take the "wait and watch" attitude with a patient this age....(jules was 7 at the time)

Now then, all of this information? Had me crazy. Truly, I was running around with my hair on fire screaming, "My kid has a brain tumor! Somebody do something!" And the somebodies, when they bothered to return my calls at all, agreed that yes. we. should. do. something. In 3 weeks we can see your son for 3 more weeks we will bless you by having you sit in the waiting room for 2 hours (because we are busy and important people) and then spend 2 minutes to go over the results of the test....which we will not remember having ordered because it was so dang long ago...and who are you, again? And please, do not hesitate to call us if you have any concerns or questions. By the way, we do not mean that. Please do not call us. We have failed to tell our nurses and receptionists to expect your hysterical calls and they will not cooperate, and in fact, they will most likely be quite snippy with you. We train them to be this way. Otherwise we would just be calling people back all day instead of visiting with pharmaceutical reps in short skirts and spending 2 minutes with patients in between. We might have to get to the office on time or cancel a golf game. We'd prefer not to do that. In the meantime, read over this little pamphlet - it explains the risks of the brain surgery we want to do on your son. Oh, and also, here is an out-of-service number for a geneticist. Because this is the only geneticist we know. When you discover that the geneticist no longer works at the UT Health Science Center....feel free to call us for another referral. We will not call you back. Because we are busy and important and hey, it isn't like it is OUR kid with a brain tumor....You should just find a geneticist on the Internet, or something. She won't bother seeing you but she will tell you, on the phone, that the odds are overwhelming that your son has neurofibromatosis Type II and she will recommend that all of your kids undergo testing. She will also let you know that the testing isn't covered by insurance but it is extremely important that you do this testing because you don't want your other kids to go deaf, do you? Because if you had caught it sooner they could have saved some of his hearing....why didn't you catch it sooner?

Do I sound bitter? I hate it when I sound bitter. So let me soften it. The wonderful, sweet, adorable, and okay I admit it, handsome doctor who found the tumor is definitely on my A List. The problem is that Dr. Charming is "just" an ENT and had to refer me to the Hot Shot to handle what he discovered in my kid's head. And when the Hot Shot (known around here as Dr. Jack-ass-on) wouldn't call me back? Dr. Charming called him for me. He is a doll. Also - I would be remiss, while talking about nice doctor-types, not to mention our good friend who is a GP. When I decided I couldn't wait 3 weeks for the results of the spinal MRI because I couldn't go that long without sleep, our friend called the radiologist and got the results, just by identifying himself as a doctor. Then he called me immediately. I was sitting in the parking lot of the Wittee Museum. My cell rang. I said, "Hello" and he said, "There are no tumors on his spine." He didn't say "Hey, this is Steve, how are you doing, well, I got the results back....." He just said, "There are no tumors on his spine." Because he is a parent. And a friend.

Also, I find it hard to maintain a constant state of bitterness while also acknowledging the fact that The Universe used that quirky little fate trick to make sure we ended up exactly where we needed to be, and just in the nick of time. In the middle of all of the hysterical phone calling, my cousin, an anesthesiologist, came down from LA to help move my aunt into an assisted living facility. He had his hands full but managed a phone call to me where he casually said, "You know, there is a place in LA where they treat more of these kinds of tumors than anywhere else in the world (really? and Dr. Jack-ass-on failed to tell me this?)- if it were me that is where I would take Jules. It is called The House Ear Clinic."

So we called the House Ear Clinic and they said, "Can you be here on Friday?" and I was like, "This Friday? What about the 3 weeks of waiting we should do to make you people feel important?" and they were like, "We can even see you Wednesday if you can make it here that soon." Wow. So we hopped on a plane with our frequent flyer miles and headed to The House Ear Clinic. Based on the fact that Hot Shot Jack-ass-on had told us Jules needed surgery and he needed it NOW (now being a very relative term to Important People) we were prepared to have to make a second trip to LA for surgery. Because the surgical procedure used worldwide to remove this type of tumor? Was developed at The House Ear Clinic. The end result is a mortality rate the same as an appendectomy procedure - down from a previous 60%. The local neurosurgeon couldn't tell us how many of these tumors he'd removed (not many) whereas The House Ear Clinic could tell us how many they'd removed in the last month.

When we arrived at The House Clinic they sent Jules for an MRI at St. Vincent's Hospital across the street. Why? We had already done MRI's at home - 2 on the brain - 1 on the spine - all under sedation. They were day-long events that began with waiting in waiting rooms, waiting in admitting offices, waiting in the pre-procedure room, waiting for the anesthesiologist to respond to the page, waiting for the machine to be repaired, waiting for Jules to go in, come out, recover...waiting waiting waiting for the results, which nobody would share with us because we were just the parents and we had to wait until Dr. Jack-ass-on was good and ready to share it with us, which even though the radiologist read the film within an hour, would be in about 3 weeks.

The House Clinic simply said, "Well, we like to read the film from our own won't take long."

Right, we thought. We had been conditioned to just accept that stupidity was part of the procedure. But guess what? We went in. We registered. Jules had an MRI (without sedation - they had insisted on sedation at home). They printed the film and we carried it back across the street to a waiting Dr. Brackman. All in about an hour.

"Well, look at this!" he said immediately, after a mere glance at the film. "This is interesting. Jules's tumor is on the cochlear branch, not the vestibular branch. That is unusual. And it explains his sudden loss of hearing. Nothing could have been done to save his hearing in that ear." Ahhhhh, folks. I started crying. I had listened to 3 people tell me that if only I had caught it earlier they could have saved his hearing. They had all looked at the same tumor in the same head. And none of them, the radiologist included, had noticed that the tumor was not on the vestibular branch. They saw what they expected they'd see (from reading literature, no doubt). Even though they had all expressed surprise that Jules could walk a straight line and was not experiencing dizziness...none of them had bothered to ask the question, "why?" Because normally this tumor is on the vestibular branch. And normally, it has to get pretty darn big to rub up against the cochlear branch and cause total deafness. And Jules's tumor was pretty darn small. So, uhhhh, shouldn't someone have said, "why?" The fact that it was supposed to be on the vestibular branch didn't change the fact that it wasn't. The fact that he could, in fact, walk a straight line...and he could not, in fact, hear a damn thing out of his right ear SHOULD have made them ask why...why...maybe the tumor is on the cochlear (hearing) branch, instead. But no. All they said was, "We need to get this thing out right away! Of course, we don't know where it is but that doesn't matter! And if only you'd caught it sooner we could also have done this and that procedure to save his hearing!" As if having a uterus didn't already cause me enough guilt.

So, yeah. Dr. Brackman glanced at the film and immediately saw the obvious answer where nobody else had even seen a question. And he relieved me of massive amounts of guilt with the simple statement, "Nothing could have been done to save his hearing." Then he said the unbelievable. "We're just going to take a wait and watch approach. Who knows? This thing might not grow and it isn't currently causing him any problems. We'd take it out if we thought it was going to damage his hearing but its already done that."

What? Dr Jack-ass-on said that was the last thing we wanted to do. But Dr. Jack-ass-on didn't know what he was talking about and didn't want to admit it. He didn't want to say, "Hey guys, I really don't have a lot of experience with this. Why don't you take him to this famous place known to ENT's and Neurottologists everywhere? Look, the phone number is right here in my rolodex." I have no doubt that if it were Dr. Jack-ass-on's kid? He'd have had him sitting in Brackman's office.

"And what about his neurofibromatosis type II?" we asked. "Can you test him here? We know all of the kids need to be tested...."

"Why would you want to do that?" Brackman asked. "The test is inconclusive unless it is positive - and it wouldn't change his treatment." Then he added that he didn't think it was a concern for Jules. We were like, WHAT??? And he said, "I don't think the kid has it."

"But," we said, "the odds are overwhelming that he has it!"

To which Brackman replied that they weren't exactly overwhelming. Statistically speaking, he had a good chance of having it. But he explained that the statistics come from his clinic. They are his patients. And Jules is an atypical presentation for this type of tumor and he doesn't think he has it. Either way, he doesn't need to be tested. Because a negative would be inconclusive and a positive would result in the exact same treatment he is already getting, which is regular MRI's to monitor tumor growth and look for new tumors. And as far as the rest of the kids undergoing expensive testing not covered by our insurance? Well, it turns out that they can't have it. If Jules has it, it is a spontaneous genetic development. So his kids could have it, but not his siblings. Again, Dr. Jack-ass-on didn't know this WHY? And the geneticist didn't know this WHY? And more importantly, why didn't they say they didn't know and send us to somebody who did?

Anyway, so that was all when Jules was 7. We were told to come back in 6 months for another MRI. Then we were told to come back in 9 months. Now we are going yearly. And there has been absolutely no measurable tumor growth, and no new tumors. No signs of neurofibromatosis type II. No brain surgery. Is it possible that Jules will never need brain surgery? Yes, Dr. Brackman says anything is possible. Jules (now age 11) is his youngest patient. He says he doesn't know what to expect. Atypical means you don't know what to expect. That is why we're waiting and watching. Going in and doing serious surgery that requires a long and stressful recuperation period, would have been an irresponsible knee-jerk reaction. And it was what the local doctors wanted to do. And remember, they didn't even know exactly where the tumor was. And the possible side effects of surgery resulting in nerve damage, facial paralysis, etc that we were warned about? Are way less likely to happen if the surgery takes place in LA - where the House Clinic doctors are used to removing this type of tumor and are not having to read the instructions like they were putting together IKEA furniture. Shouldn't somebody have said, "Hey, by the way, the people who write the instructions for this know, you could just get them to take it out. They might be better at it...."

Anyway - that was a long-winded rant, wasn't it? The moral of the story is:

Somewhere in the world there is always somebody who knows what he's talking about. Before you have your head cut open - you should find him. It can make all the difference. And of course, this applies to things other than brains. I am now a firm believer in second, third, fourth, and fifth opinions.

We had a good time in LA. Oh! And we had a small earthquake! We had been in our hotel room for about 20 minutes when it started wobbling like jell-o. It lasted about 3 seconds. Jules immediately called Joel to make him jealous. "Hey! Dude! We just had an earthquake!!" To which Dude replied to his brother with the brain tumor, "NO WAY! You get to have all the fun!"

So now we go for another year with the brain tumor thing on the back burner. I never thought I would be able to do this. I didn't think I could live my life in 1-year increments. Turns out I can.

I came home from LA sick. I have a cough, fever, and a sore throat. Swine flu? God I hope not. I do not want to be the person known in the news as the "one who got on a plane and spread swine flu all over the smucking place." (smucking, you say? yes, i say. i just finished a stephen king novel and now his word is stuck in my head.) Anyway, so I'm not feeling so well and you should all leave me comments to make me feel better and give me something to look forward to :).

I'm signing off as a Grateful and Relieved Sardine Mama to Jules - the middle fishie in my little school. The one with the tumor who can't hear out of his right ear, the one who has braces and glasses and Asperger's Syndrome...the one who keeps teaching me that I can do all kinds of things I thought I couldn't. The one who gives spontaneous little hugs throughout the day and holds up his index finger when he speaks...the one who likes to twirl outside under the pecan tree with a light saber in his hand...the one with the massive turtle collection....the massive key collection....the one who never questions the things that just keep coming his way....because a boy just simply has to do what a boy has to do...and he does it all beautifully. And speaking of making me feel good with comments? Leave me some at Social Skills, too. Funny post, there.


  1. dang, joel's right he gets to have all the cool things happen to him!
    and i hope you get better soo.

  2. Thanks, Harlan! I mean Guy. And yes, Joel is right. All the cool things happen to Jules.

  3. What's a little swine flu compared to good test results. Am I right?
    And I hope you feel better soon.

  4. great news! hope you're not smucking up texas. that would smucking suck.

  5. Try again ... this was an awesome post and made me cry. I would hate to have the life-or-death responsibility of being a doctor. Our friend Paula just endured her sister-in-law being in a diabetic coma for weeks, the doctors saying it was time to plan her funeral ... and then she woke up. It will be a long road to recovery, but she is very much alive!

  6. Why do you always make me cry? Loved your ending..and now I have a better grasp of the "whole story"..hope you feel better soon!

  7. Nicole - actually I'm quite sorry for having made everyone read through the entire history of the story - but I just had to get it out of my system! I am surprised you have not heard the entire thing before :). And I don't know why I make you cry. You have stories that are far more amazing - and I know you are also finding yourself living life in increments. Well, my verification word is ortifini - which sounds Italian. Or like something you'd sip while sitting on the deck of your yacht...I am STILL sick, btw. I have bed head and everything. I am now coughing coughing myself a major headache. The positive side to all of this is that everyone here is afraid to come near me.