Category: Medical

It's time for another post. Last time 'round, Maya was experiencing a good deal of pain and spasms. Now, on December 1, we can report - PRAISE BE!!! - that she is pain-free and virtually spasm-free.



Maya got up to a good therapeutic dose of meds and the result was no pain, and very little spasming. She was so thankful, as were we all, because this allowed her to focus on her nursing studies. She is nearing the end of her fall semester, and has but one more semester - AND a good dose of standardized tests - to go. Her BS and RN are in her sights!

The news is all good, with the sole exception of some dizziness, or vertigo, that Maya has experienced recently. Even there, we have some good news: Dr. Jackler and the superb Stanford crew did a follow-up and new MRI and it showed no growth in the itty-bitty piece of tumor Dr. J. was forced to leave at the skull base. Dr. J. says "Don' worry!" and we readily and hopefully agree.

Meanwhile, Maya is feeling good, upbeat with the reality of recovery at hand. It has been a much tougher row to hoe than she - or we - thought. It may be again in the future, though we all now know what to expect. But with luck and a good following wind, the worst of this experience may be over and Maya will continue to progress. That means that she will remain whole in mind and spirit, whatever deficits she has suffered in her body. With good luck and positive spirit, those deficits will be minimized, no further problems will stand in her way, and she'll be rollin' on to great things in her future.

Can anyone doubt that this experience will make her a better nurse?

Godspeed, Maya!

Sorry for the delay in posting, as many of you called or emailed awaiting further word. I’ve been SWAMPED!


Maya with glint in eye looking off to The Future

Maya is out of the hospital and back at school and her part-time jobs. Her surgery was a big success, and took less time than expected. Her voice is good and strong, less hoarse with each day. You can understand her on her cell phone!!! It’s not yet clear how much her swallowing and spasms will be helped but there is a good chance both will be improved, even substantially.

It’s too early to tell about pain, although that too may be improved, or perhaps it’s the general “the nerve is healing itself” that is making the pain better. We shall see....

Most importantly, Maya is in good spirits, ready for the new school year.

Recovery is far from complete. Maya’s operation at the end of April/ beginning of May was serious and the consequences were more complex than we had hoped for. She suffered permanent deficits, and has continuing issues with spasms, swallowing and pain. I think we all underestimated the extent and length of her rehab.

Well, we are older and wiser, especially Maya. She definitely has a better idea of what to expect from here on, and so do we. Some problems, like spasms and pain, are still issues, though everyone believes they will largely subside over time. Other things Maya will simply not regain; these - nerves, an artery, partial hearing - are not small items. But Maya can and will be able to live a full, robust life without them. That is, Big Picture, there is NO indication of anything but her return to basic good health, her ability to be the person she wants to be in the career she wants to have, and her living the life she wants to live. It’s not “no harm, no foul,” but we all count our blessings that this life-altering event will move on to become, some day, something that happened “long ago.” Years from now, we hope to remember 2008 not as “The Year of Maya’s Trauma” but as “The Year of Sarah Palin’s Trauma.”

Maya’s not there yet, but she’s working on it.

Thanks, all, for your continued support and interest. -- Richard

Category: Medical

Maya & her grandma
April 23, 2008

This is our first update since May. Since that time, much has changed and some things have remained the same or similar.

Maya has generally continued to improve. She just moved into a new apartment with her good friend Maricela, and is heading back to school to finish her last year of the nursing program. She’s also found two part-time jobs on campus, one at the athletic facility and one in the nurses’ skills program. All that should keep her busy.

In some ways, Maya has progressed extremely quickly, as the last blog posts note. There are other positives, such as the now-almost-invisible scar from the operation, which despite its size was a work of art done by Dr. Jackler and his team.

In some ways, things have moved more slowly. For instance, after a period of quick and significant improvement, Maya’s swallowing and speech have deteriorated somewhat. She continues to have a great deal of pain from her trigeminal nerve along her jaw line, as well as spasms that can cause a great amount of mucus that she then needs to “clear” and sometimes cause a quick and sudden vomiting reaction.

This Friday she’s going to have a second, easier surgery focused on moving her vocal cords. We expect that this will give her some immediate benefits in the swallowing and speaking departments. This is similar to the second surgery the doctors had planned to do in the hospital that was postponed back in early May because of concerns about the possibility of a stroke.

Right now, with no cranial nerve on the right side, she cannot move the right vocal cord or control right-side swallowing. She has developed compensations and done physical therapy, and also had an injection of collagen (yes, that same stuff!) to fill in the space where the vocal cord does not close.

But what really needs to happen is for Dr. Ed Damrose, the throat expert, to reposition the right vocal cord in the closed position. That will mean easier talking, easier swallowing, no space in the middle for aspiration and coughing and – as a free bonus – brighter, cleaner dishes and polished floors you could eat off of.

That makes this a “good” surgery – a follow-up to make Maya’s life easier. No one is positive whether it will help the trigeminal pain or the spasms, but it might. And Maya also has a great neurologist down at Stanford who is working on pain management and the spasm issue.

We don’t expect Maya to be in the hospital more than overnight. She’ll have the long weekend to recover, and be ready for her second day of school on the Tuesday after Labor Day. Of course, nothing ever goes exactly as planned, so we can’t be certain. We’ll send a follow-up.

With all these side issues, it’s been a rough Summer. Maya (and all of us) also lost Jules Tygiel, my dearest friend and the person Maya described as her inspiration. Jules died on July 1. But he showed us how to live in good times and through bad and we continue to try to apply his lessons. We are looking forward to a much better, happier, and curative Fall, including a trip to NY to celebrate Grandma's 90th birthday.

This week – three weeks post-op – Maya had her follow-up appointments with all the medical teams. The overall news is very good.

First, all the testing shows that Maya is past the hardest part. Maya has broken all land-speed records in re-learning how to swallow. She’s also been making great strides in strengthening her voice. And she has full range of motion of her right shoulder, which we were told she wouldn’t have. This is not surprising to those of us who know how quickly she recovers and how clearly she is able to communicate with her muscles.

In fact, by Graduation Weekend, two weeks after surgery, she was out on the dance floor, not quite in full-on mode, but shakin’ it pretty well, as the pictures show.


More importantly, the doctors all feel that further surgery (originally scheduled for when she was still in the hospital) is almost certainly unnecessary. They also believe that Maya has plenty of blood circulation without her right carotid artery – other arteries develop to provide “collateral” blood flow – and that further surgery to create a bypass or guard against stroke is almost certainly unwarranted.

All this is good news. But no surgery of this complexity and seriousness is without its problems. Maya’s tumor was even larger and more invasive than was suspected – an unparalleled size for someone so young – and unusually aggressive to the point where it had largely destroyed the wall of her carotid.

To monitor things in the future, Dr. J plans periodic MRIs, to make sure the tumor does not regenerate, and Stanford will do some genetic screening to see whether the tumor has any genetic markers.

While Maya’s been cleared to drive and to exercise, she also has issues to overcome, in addition to the general recovery from serious surgery – continued sharp nerve pain in her jaw area, the continued challenge presented by swallowing, the work needed to strengthen her voice, and, unfortunately some limits in vision in her right eye, and at least at the moment, no hearing at all in her right ear.

These are serious issues, to be sure. In the big picture, though, Maya’s attitude is that none of these things will prevent her from being who she wants to be or doing what she wants to do. She feels blessed to have emerged from this experience almost entirely whole in body and more whole than ever in spirit. She is looking forward to life’s next challenges and hoping that they are somewhat less exciting than those of the last few months.

Maya and her roommates

Category: Home

Maya had a great 22nd BD party yesterday, as her remarkable recovery continues.
Maya, Pops, & birthday cake

The pathology report came back showing that despite its rapid growth, the tumor was benign. Follow up appointments continue, but things are lookin' up and Maya's lookin' GOOD!

The 22-year-old herself.

Category: Home

In a remarkable feat of lingual legerdemain, Maya proved her doctors wrong by learning to re-swallow so quickly that she got her feeding tube OUT just before taking her own OUT from Stanford Hospital Friday. The "temporary" injection procedure was so effective that she may not require the second surgery on her vocal cords.

After having the goal of eating Jello this week, by Saturday night Maya had set all kinds of food records, downing tunafish sandwiches, fruit, and an assortment of other foods. Throw away the blender for her BBQ -- she's eatin' up a storm.


(However, her family firmly DENIED rumors that Maya will be entering the Coney Island hot-dog eating contest this summer. "Too much cholesterol," said her grandmother, the Coney native.)

Further reports soon.

In light of the relative downer post yesterday, we have this from the chief ENT resident, Mai Thy, this afternoon:

"Maya had her vocal cord injection with Dr Damrose today and afterwards, we sat her in a chair and she swallowed jello without any problems with the
turn-and-tuck maneuver. She is truly amazing! She is going to take it slow
and practice with the jello tonight, and I will have speech therapy see her
tomorrow for more therapy."
She ate her favorite flavor - "RED"!

Category: Medical


Let’s start with the very latest word from Maya herself: “I feel better!” Spoken in a strong voice. More Maya this evening: "I don't feel depressed or dispirited; I just appreciate life ."

This at the end of two very rough days -- plenty of pain, plenty of problems, but ultimately plenty of positive progress.

And plenty of friends. "Taffy" gave up her whole afternoon and evening to be with Maya just when she felt the worst. Jeli, Paige, and Amy showed up for a shampoo and f-rt jokes. And Maya specifically told me tonight to tell Jules that he and the way he lives his life is an inspiration to her.

The facts? The surgery originally scheduled for Monday morning has been put off for at least a couple of weeks and perhaps a bit longer. Maya had some blurred vision in her right eye, and the docs became concerned about blood flow issues. So instead of surgery, Maya had another MRI to make sure that she didn’t have any ischemia – otherwise known as a stroke.

The MRI came back looking great throughout her brain. Unfortunately, further examination of her eye revealed some blockages in her retinal arteries. Those blockages are not dangerous, but they have done some damage already, and she's had a lot of pain. She will most likely continue to have blurring in the lower part of her right eye’s vision field.

Our expert medical crew, now including a retinal ophthalmologist and a neuro-opthalmologist, concluded that Maya’s surgery should wait until her retinal arteries regain a stronger blood flow in the next few weeks. When they do, the surgery will be much safer.

Until then, Maya has a few more challenges. She can’t ingest food until she re-masters swallowing well enough to prevent stuff from going down the wrong pipe. Meanwhile she’s being fed through a nose tube. Tomorrow she will have a procedure done by Dr. Damrose, the voice box and swallowing specialist (we got LOTS of specialists) that hopefully will assist her swallowing.

Our bet is that her learning curve will be short, accelerated by her terrific attitude and, of course, her well-known desire to chow down. Even on Jello, which she’s looking forward to in her favorite flavors, “red,” “pink,” "green," [joke - "what is Geo. W's favorite flavor?"] and many others. Forget carne asada – Maya has found a new appreciation of Jello.