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Surgical Trip Report 2: New Eyesockets, Cheekbones  
User currently offlineSmithAir747 From Canada, joined Jan 2004, 1628 posts, RR: 28
Posted (3 years 3 weeks 4 days 15 hours ago) and read 4012 times:

This is my second surgical "trip report" of a series, detailing my surgical "adventures" over my lifetime undergoing numerous surgeries to correct my craniofacial deformities stemming from Treacher Collins syndrome.

This, sequentially, follows on from my first surgical trip report, First In A Series of Surgical Trip Reports! First In A Series Of Surgical Trip Reports! (by SmithAir747 Jun 18 2011 in Non Aviation) , in which I described my first set of surgeries (for cleft palate repair and lower jaw augmentation) in a long hospitalisation at St. Louis Children's Hospital in July-August 1982, at age 7.

Background

Born with Treacher Collins syndrome, I had no zygomatic arches (the cheekbones) and my orbits (the eyesockets) were incomplete and wide open on the lateral side of each. Other deformities included jaw deformities, cleft palate, and no ears (no ear canals, outer ears, or middle ears).

During my first hospitalisation at St. Louis Children's Hospital in July-August 1982, after the surgeons did my tongue-flap palate and lower jaw augmentation surgeries, they did a CAT scan series of my maxillofacial region to see the extent of my skeletal deformities from my syndrome. They found serious bony defects of the eye sockets and cheekbones. As you will see in the drawings below, my skull looked very ALIEN  

Compare my drawings of a normal human skull with those of my skull, to see what the doctors found:

Normal Human Skull:

My Skull, with Treacher Collins Syndrome, drawn from my CAT scans in 1982, age 7:




After they saw the bony deformities in my CAT scans, the doctors got to work planning my next surgery, to be done in the spring of 1983 (at age 8).

They planned to use pieces of rib and wires to make new lateral and lower rims for the orbits (eye sockets) and new cheekbones.

So, on May 8, 1983, Dad and I started out on our 2-day drive from Fort Wayne, IN, to St. Louis, MO. Unlike Mom, who had driven me down to St. Louis nonstop previously (in 1982), Dad opted to stay at a motel in central Illinois on the way down. The motel Dad chose was the Best Western Stuckey's Carriage Inn, in Altamont, IL, off I-70 exit 82. This began a long tradition: Whenever Dad took me down to St. Louis for my surgeries from then on (through 1991), we always stayed at the very same Best Western. They got to know us very well--they recognized our green 1978 Chrysler LeBaron Town & Country Station Wagon! One Christmas, they even sent us a Christmas card. I still have this card! Once, I even saved a bar of Best Western soap from the motel.

A green 1978 Chrysler LeBaron Town & Country Station Wagon, identical to our family's:

The Best Western Stuckey's Carriage Inn, Altamont, IL, which lives on in my memories:

St. Louis Children's Hospital, spring 1983, age 8: Procedure: Fabrication of new orbital rims and cheekbones using rib grafts and wires

On May 9, after overnighting in Illinois, Dad and I arrived at St. Louis Children's Hospital. At that time, SLCH was still in the original, late 19th-early 20th century building, with a 1960s tower pavilion called Spoehrer Tower facing Kingshighway Blvd. This was next to the huge Barnes Hospital/Queeny Tower campus.

Barnes Hospital, Queeny Tower, and St. Louis Children's Hospital:

http://img.photobucket.com/albums/v655/SmithAlien747/Francis%20Medical%20History/scan0019.jpg


St. Louis Children's Hospital, Spoeher Tower Pavilion:




In those days, patients were admitted the day before surgery, and all admissions procedures, including laboratory tests, were completed during this admission process. I was checked into one of the two-bed rooms in the Spoehrer Tower pavilion, overlooking Kingshighway Blvd. and Forest Park. I had my blood drawn (this was the part I most dreaded--the fingerstick with a blue lancet). They said it would be only a pinch, but it hurt like the dickens--I yelped out! I was given a cardboard box, with a denim pattern on it, that was similar to the McDonald's Happy Meal. In it were toiletries and an elf hand puppet. Apparently, the elf was a mascot for Children's. (I remember at that time, when I was young, I also visited Riley Hospital for Children in Indianapolis, and their mascots were Raggedy Ann and Andy. So, even back then, children's hospitals had mascots!)

As a newly admitted patient, the nurses put on a "pre-op party" for me and several others. We saw a slide show of what the operating room looked like. Having had surgery there several times the previous year, I was already intimately familiar with the alien world of the SLCH operating rooms. We were then taken into the operating suite (which was located in the oldest part of the hospital) for a tour of the holding room and recovery room.

That evening, I had dinner (my "last meal" before the next day's surgery). Dad and I were visited by several doctors, including my main surgeon (who was the medical director of SLCH's Cleft Palate and Craniofacial Deformities Institute) and the anaesthesiologist, who went over with us what to expect the next morning. I was to have nothing to eat after midnight, and a NPO (nil per os) sign was posted over my bed.

I was awakened the next morning. I was starving (no breakfast) and scared (from previous experiences). I was given a pre-op shot in my buttock (probabaly atropine IM). Thus began an interminable wait, like waiting for the tumbrel ride to my execution. The gurney (or tumbrel  ) finally came. Dad accompanied me on the long trek through labyrinthine, narrow hallways deep into the bowels of the original hospital, where the OR suite was. I spent another eternity waiting in the stark white surgical holding room, full of gurneys separated only by curtains (the only colour in this cold stark room). The long execution watch began again...until finally I was wheeled back through the yawning double doors to the ORs beyond. Before I went back, the nurses asked what "flavour" I wanted for my anaesthesia mask (I found out years later, that anaesthesia masks can be flavoured with a special wax perfume crayon or ordered pre-flavoured, in order to mask the alien taste and smell of the inhalation anaesthetic gases). I chose strawberry, as I did before.

The typical operating room of the old St. Louis Children's Hospital:

http://img.photobucket.com/albums/v655/SmithAlien747/Francis%20Medical%20History/scan0020.jpg


The typical operating room in the original SLCH was tiled in light blue. On the ceiling were two parallel tracks, on which hung four large blue drum-shaped AMSCO Challenge 22 surgical lamps. (Yes, as a very observant child, I took note of medical brand names around me!) I remembered the cold, alien, altar-like stainless steel operating table with a foam doughnut to rest my head upon. As I looked up at the ceiling and the surgical lamps hovering over me like flying saucers, the gowned and masked nurses and anaesthesiologist prepped me. They put "smiley-face" EKG pads on my chest and hooked me up to the EKG machine, which started beeping out a healthy rhythm. As the room was quite cold, they put a blanket over me.

The moment came: The Mask was put over my nose and mouth (pre-flavoured in strawberry). Immediately, I tasted an alien, bitter-sweet gas coming through the mask. There was just nothing to compare the alien taste to. Soon, I started tingling all over--and buzzing all over at the same time (I heard and felt the buzzing/tingling sensation all over my body). Then I began to feel like I was spinning (or the room was spinning around me), as though I was in a top-loading washing machine. The voices and sounds around me became more distorted. My eyesight was also strangely affected--I started seeing the individual tiny holes in the ceiling above more sharply. The last thing I remember was that my mind suddenly went very deathly quiet...before I went spinning down into the dark abyss...

(Whilst I was asleep, the doctors harvested rib grafts and used them, along with wires, to fashion a frame around the lateral and lower borders of the eye sockets and to create a cheekbone on either side. Then they did the first stage of outer ear reconstruction--I had nothing but tiny skin tags for outer ears, and no ear canal openings. They created a lobule out of these tiny skin tags on either side.)

...the next thing I remember was starting to wake up in the post-anaesthesia recovery room--another stark white room similar to the surgical holding area. I had experienced no passage of time. My state was as close to death as I can remember.

The strangest, most horrifying thing was, I could not see at all! My eyes were unable to be opened for several days afterwards for some reason. I heard Dad and several other people around me. I had an IV in one of my arms, I could feel. My terrified imagination went wild--showing me bizarre worlds that were all too real to me. Over the next few days, I had to be fed and walked around like the blind. I even went to the playroom and felt everything around me until I had the toys I wanted to play with--all by feel.

I was finally able to open my eyes several days post-operatively. To my horror, I had lost over 90% of the sight in my right eye! To this day, I wonder if something happed during the grafting of ribs to make my new eye socket rims and cheekbones; did the wires damage the right eyeball?

I received several shots in my buttocks over several days--I don't remember why.

A few days after that, I was finally discharged home. That day, Dad and I were taken to a room full of patients' medical records. What struck me was that my folder had the name "Hugh O'Connor" on it, not "Francis Smith". I wondered why. My imagination tried to explain it to me--perhaps it was a patient-naming custom in the medical field--to assign "code names" to every patient, replacing their "real" names with these medical code names!

It wasn't until years later that I found out why I was still called "Hugh O'Connor" in the hospital. It was still my legal name until my adoption as "Francis Smith" could be finally legalised. (I was not officially, legally adopted until 1989, when I was 14). Where did "Hugh O'Connor" come from? It was the name given to me by my biological parents, from Ireland, when they were here in the USA on graduate school sabbatical (and I happened to be born in the USA). So it was my legal name for many years. My new, adoptive parents (the Smiths) had me baptised "Francis Smith" in their Catholic tradition, after St. Francis of Assisi, after I was placed with them at age 3 in 1978. Not a bad trade!   "Francis Smith" bacame my legal name in 1989 when my adoption finally became legal (the only time I've stood before a judge in a courtroom).

Dad and I left St. Louis that day for home, and made it home in the late evening.

My bad right eye was eventually checked out by the ophthalmologists in the Rotary Building at the Indiana University Medical Center (where Riley Children's Hospital is at). My right eye tested at 20/200, legally blind. I was fitted with eye patches over my good (left) eye for a while (to try to get my right eye back to seeing right), but to no avail. I was also prescribed glasses for over a year. Since I had no ears, these glasses were fitted with elastic bands to hold them on my head. The glasses did not help either. Here's a photo of me at that time with the glasses.

Me, in 1983, with glasses:




Stay tuned for my next Surgical Trip Report--for my surgical adventures, as I got new outer ears!

Enjoy!

SmithAir747

[Edited 2011-08-06 00:33:07]


I will praise thee; for I am fearfully and wonderfully made... (Psalm 139:14)
12 replies: All unread, jump to last
 
User currently offlineKiwiRob From New Zealand, joined Jun 2005, 7299 posts, RR: 5
Reply 1, posted (3 years 3 weeks 4 days 12 hours ago) and read 3961 times:

Good luck, I hope the surgeries work out well. I had not idea what teacher colins was, googled it, not a nice problem to have.

Also you're drawings are really good, are you an artist?


User currently offlineSmithAir747 From Canada, joined Jan 2004, 1628 posts, RR: 28
Reply 2, posted (3 years 3 weeks 4 days 5 hours ago) and read 3892 times:

Quoting KiwiRob (Reply 1):
Also you're drawings are really good, are you an artist?

Yes, I've been an artist since I was very young. I specialise in drawing (pencil, ink, and coloured pencil); my subject matter covers a wide range, including human anatomy, aliens/UFOs, landscapes (both Earth and alien), aircraft, architecture, you name it.

The drawings of my skull were drawn from CAT scan images taken in 1982.

SmithAir747



I will praise thee; for I am fearfully and wonderfully made... (Psalm 139:14)
User currently offlinedl021 From United States of America, joined May 2004, 11447 posts, RR: 75
Reply 3, posted (3 years 3 weeks 1 day 2 hours ago) and read 3712 times:
Support Airliners.net - become a First Class Member!

Didn't know you're an artist as well....


Hope all is well for you.

Are you still in SFO? Are you a PhD/MD yet?



Is my Pan Am ticket to the moon still good?
User currently offlineSmithAir747 From Canada, joined Jan 2004, 1628 posts, RR: 28
Reply 4, posted (3 years 3 weeks 1 day 1 hour ago) and read 3686 times:

Quoting dl021 (Reply 3):
Didn't know you're an artist as well....


Hope all is well for you.

Are you still in SFO? Are you a PhD/MD yet?

Hi Ian!

Yes, I've been an artist nearly all my life (speciality: drawing in pencil, ink, coloured pencil, or India ink).

I am still in San Francisco (have been for 4 years now, going on 5). Hopefully, next summer, I will have my PhD. I have not only been busy with my laboratory work (on hypoxia-induced craniofacial defects in chick embryos), I have also been travelling across the USA and in New Zealand and Canada, giving invited lectures and speeches about my research and (more importantly) my life story about my experiences with my craniofacial defects.

For example, here are some recent speaking engagements:

1) 2009: National scientific conferences in New Orleans, Monterey CA, and SFO
2) 2010: Invited keynote lecture at University of Otago dental school research day in Dunedin, New Zealand
3) 2011: National scientific conference in Washington, DC
4) 2011: Invited keynote speech at Canadian Hard of Hearing Association national conference in Yellowknife, NWT

I am also working on a book.

Hope to see you soon!

SmithAir747



I will praise thee; for I am fearfully and wonderfully made... (Psalm 139:14)
User currently offlineAsturias From Spain, joined Apr 2006, 2148 posts, RR: 16
Reply 5, posted (3 years 3 weeks 1 day 1 hour ago) and read 3683 times:

I'm very impressed with the drawings, they're technical yet with life. Most impressive! Best of luck with your surgical trip!!  

asturias



Tonight we fly
User currently onlineBraybuddy From Ireland, joined Aug 2004, 5687 posts, RR: 32
Reply 6, posted (3 years 3 weeks 1 day 1 hour ago) and read 3678 times:

What a frank, intelligent and interesting post . . . and a gust of fresh air in these forums! I wasn't aware of Treacher Collins before so thanks for all the background info SmithAir. Good luck with the surgery, and I'll be looking out for your updates in future.

User currently offlineSmithAir747 From Canada, joined Jan 2004, 1628 posts, RR: 28
Reply 7, posted (3 years 3 weeks 1 day ago) and read 3661 times:

Quoting Asturias (Reply 5):
Quoting Braybuddy (Reply 6):

Thanks!

This is a series of Surgical Trip Reports describing my past surgeries, going way back to my childhood. Stay tuned for more installments! (The first Surgical Trip Report is linked in my opening post.)

SmithAir747



I will praise thee; for I am fearfully and wonderfully made... (Psalm 139:14)
User currently offlineFlyPNS1 From United States of America, joined Nov 1999, 6606 posts, RR: 24
Reply 8, posted (3 years 3 weeks 23 hours ago) and read 3641 times:

Quoting SmithAir747 (Reply 4):
Hi Ian!

Yes, I've been an artist nearly all my life (speciality: drawing in pencil, ink, coloured pencil, or India ink).

I am still in San Francisco (have been for 4 years now, going on 5). Hopefully, next summer, I will have my PhD. I have not only been busy with my laboratory work (on hypoxia-induced craniofacial defects in chick embryos), I have also been travelling across the USA and in New Zealand and Canada, giving invited lectures and speeches about my research and (more importantly) my life story about my experiences with my craniofacial defects.

For example, here are some recent speaking engagements:

1) 2009: National scientific conferences in New Orleans, Monterey CA, and SFO
2) 2010: Invited keynote lecture at University of Otago dental school research day in Dunedin, New Zealand
3) 2011: National scientific conference in Washington, DC
4) 2011: Invited keynote speech at Canadian Hard of Hearing Association national conference in Yellowknife, NWT

I am also working on a book.

Congratulations on all your research success and thanks for your post. Your drawings are really good too! I, too, was born with a craniofacial deformity (cleft lip/palate) though obviously not as severe as yours. Reading your posts brought back memories I had of the numerous surgeries (nine total) I had as a child.


User currently offlineWarRI1 From United States of America, joined Sep 2007, 8873 posts, RR: 10
Reply 9, posted (3 years 3 weeks 22 hours ago) and read 3614 times:

Quoting SmithAir747 (Reply 7):
SmithAir747

Let me wish you the best of luck in the future. I look forward to hearing from you again.



It is better to die on your feet, than live on your knees.
User currently offlineSHAQ From Panama, joined Jun 2007, 376 posts, RR: 0
Reply 10, posted (3 years 3 weeks 20 hours ago) and read 3572 times:

Thanks for this trip report SmithAir!
Before , I wasn't aware of the existence of this disease.
You're drawings are good , keep going !
Btw, saw your previous surgical trip reports , also was awesome!



Studying hard, for flying right!
User currently offlinecanoecarrier From United States of America, joined Feb 2004, 2839 posts, RR: 12
Reply 11, posted (3 years 3 weeks 20 hours ago) and read 3566 times:

Interesting post. I remember you posted when you were traveling to Whitehorse or Yellowknife (if forget which) to speak at a seminar. My wife is a pediatric intensive care nurse, who almost took a job at STL Children's, but went to KC instead. Out of interest, are you still going to a pediatric facility for surgery? It's not that uncommon for someone who began treatment at a children's facility to continue treatment well into their 20's or I'm sure in limited cases their 30's.

Although I don't have any firsthand knowledge of your medical condition, one of her best friends growing up had Progeria a horrible disease. I'm happy to know that you've done wonderful things since '83. Best of luck.



The beatings will continue until morale improves
User currently offlineSmithAir747 From Canada, joined Jan 2004, 1628 posts, RR: 28
Reply 12, posted (3 years 3 weeks 17 hours ago) and read 3545 times:

Quoting canoecarrier (Reply 11):
Out of interest, are you still going to a pediatric facility for surgery? It's not that uncommon for someone who began treatment at a children's facility to continue treatment well into their 20's or I'm sure in limited cases their 30's.

Thanks for asking! Yes, I still had surgeries for a few years after my 18th birthday at the children's hospital in Indianapolis (called James W. Riley Hospital for Children). I had surgeries at both STL Children's and at Riley (in fact Riley is where I ended up right after birth, had some early surgeries there from birth in 1975-1981, then went to STL from 1982-1991, then came back to Riley from 1991-1996).

Shortly before my 18th birthday (1993), I had my last elective craniofacial surgeries (to put malar and chin contour implants in, and at the same time, an eye muscle surgery). Then things went wrong--one of the malar implants (under my right eye) got infected less than a month later. I ended up in emergency surgery--at Riley children's hospital--for drainage and irrigation of the implant, then spent a whole week on IV antibiotics there. I turned 18 in hospital.

That wasn't the end though. I kept getting infections in one of my malar implants, and had 4 emergency surgeries to drain and irrigate the implant sites from 1995-1996. The final surgery, in summer 1996, was done to completely remove the "repeat offender" implant.

Thus I was in a children's hospital through age 21 for the remainder of my surgeries.

My first surgery at an adult hospital was in 2003 (age 28), the insertion of the screw in my skull for my BAHA (Bone Anchored Hearing Aid) implantable bone conduction hearing aid.

Four years ago, when I came out to the University of California San Francisco (UCSF) to start my doctoral studies, I was actually looked at and evaluated by the UCSF Children's Hospital craniofacial clinic. The UCSF craniofacial team actually wanted to do a double distraction of both jaws (maxilla and mandible) with an Ilizarov-style device to open my pathologically narrow airway (part of Treacher Collins syndrome). But they found I still have no functional TMJ on either side, so my lower jaw (mandible) would just relapse. If it weren't for the lack of TMJs and the excessive tissue scarring inside my maxillofacial region, I would have actually had this major surgery--at the UCSF children's hospital. I was 32 at the time.

So it is true, from my own experience, that people like me can continue to be seen at a pediatric hospital well into their 30s.

I'm hoping someday that my airway can be widened somehow, and my jaws repaired better so I can eat easier, as surgical technology evolves (and craniofacial regenerative therapies come of age).

SmithAir747



I will praise thee; for I am fearfully and wonderfully made... (Psalm 139:14)
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