“When you’re suddenly told that you have a condition that is considered terminal,” she said on the podcast the Human Guinea Pig Project in 2019, “the one thing you desperately need is psychological support, and it’s not there.”
Glioblastoma is a particularly aggressive type of brain tumor that seems to defy treatment. It is what killed President Biden’s son Beau in 2015 and Senator John McCain in 2017.
“Median survival, the point by which half of those with glioblastoma have died, is usually put at 14 months,” Ms. Morris wrote in the essay. “Only one in 20 people survive five years.” 2016 – 2021, Jessica did better than the median. What’s brutally unusual is knowing the date with death averages 14 months. Knowing is a blessing and a curse.
Cause Celebre? The NYT article hit right where I live. There’s history here:
I started neurosurgery in the 70’s. The big discovery was RT – radiation therapy – worked. It worked so well that the clinical trials ended early because it made such a dramatic difference. The median survival was 12 months with RT. Chemo added a couple months. Let’s see. I’m retired. Nearly 50 years later the numbers are about the same. We didn’t get far? We didn’t try hard? We ignored the disease?
There are always exceptions: Susan D survived more than 10 years after my initial treatment of her. I would shake my head in wonder each time she waltzed into my office past the secretaries and Ginny, my nurse, to plop down behind my desk and greet me, “How’s it going doc?” One day at the beach she reclaimed her wig (that resembled a “drowned rat”) from group of startled kids, when the wig washed from her head in a wave. Susan had the wherewithal to laugh at herself and make us laugh.
14 months? It is the median – the peak of the Bell curve. There are those who survive longer and those who succumb in less than a year.
Add Senator Ted Kennedy to the list. At the time of his diagnosis he convened a group of prominent neurosurgeons from around the US. One confided he did not want the honor of Kennedy’s surgery because his death soon after would be a negative impact on his reputation. We expected to hear, and, Ted got, the very best in neurosurgical state of the art treatment. Ted lasted about 18 months. He lived to make a speech at the DNC. Ted was not all there when he made that speech.
We have computer guided neurosurgery that will remove all visible tumor seen on the scan. The problem is that tumor cells lurk in the borders, too small to see or resect. The tumor genome is multi-ploidy. Therein lies our failure. We cannot simply resect brain without consequences.
There’s much promising research. We will cure this disease. We just haven’t made much progress in about 50 year. And, we have – made progress. Sorry, chemo, RT, and surgery, that’s it? Immunotherpy, gene therapy… all promising. Hope?!
Support? Yes, we do. I did. I prepared the family in advance. For the patient, hope. Always provide hope. This brain cancer takes away your ability to realize or care that you are dying. So, comfort is the word. As the patient, you will slowly lose track and be unaware you are dying. Your family will know. It will be particularly hard to watch mom become not mom. Therein lies the truth in telling the facts and letting family adjust to the inevitable. It is profoundly sad to lose a loved one no matter the circumstances. Support? Yes, I provided a lot.
There is not a single patient death that you ever shrug off. Knowing is a burden. Every single patient I ever lost was a defeat. Like a relief pitcher in baseball – full count, two outs in the 9th with the bases loaded – you don’t dwell on the home run you pitched last night. Compassion is something every physician must master. If your patient does not have hope, you need to rethink your approach. There is no compassion in telling your patient they are doomed outright. In this case, hope is lying. We (neurosurgeons) all know this.
The choices are not cookie cutter. Against the backdrop of the facts, Jessica sought hope. I never lied. If you ask, I’ll tell you. But… always, hope. Circular thinkng, but, if you ask for the truth….
It’s a small field. There are about 3700 neurosurgeons in the US, not too many more than the average daily kill from covid. It’s unlikely you have heard of any, much less, those who are heroes to me. Yasergil, Heifetz, Cloward… Ransahoff. Yasergil and Heifetz pioneered early aneurysm clips that revolutionized how we treated the berry (time bomb) aneurysms in the head. Cloward pioneered the anterior cervical decompression and fusion. He kept his donor bone in his refrigerator in his home at one point. Ransahoff, was my training director. His contribution was to teach me judgement – when to operate, how far to go, when to get out. He famously had a penile implant, facial plastic surgery, and finally committed suicide when his memory was failing. I saw these men in their later years too. Fame had been pushed aside by younger surgeons for progress as they were left behind to grow ever more frail. It’s life’s cycle. But once upon a time, I walked among giants. I never expected to be fortunate enough to be among them. They were authors and teachers in places far from me. Yet, here we were, once.
I did a search on the hard drive for a picture. These images all carried the number “IMG_0771.” The image number(s) recycles. It is the nature of digital cameras. Fish in the Red Sea. Cat in Delaware.
I was surprised by the images that had the same number spanning many years. The image of Jules, around 2007, and Colleen 2014. Jules – Maine or Vermont. Colleen NYC.
I was blown away by the mask and the drawn face. It was a bit of shock. I have no recollection of that joke, date and place, unknown. And then, there’s a cerebellar tumor, Jeddah circa 2013? As I recall we successfully removed that tumor and it’s recurrence. IMG_0771, this image, has been an interesting historical journey touching significant things in my life.
Signature shot. I shoot weddings. No, not really. I’ve just been there when weddings occurred. Yes. I’ve shot a few. Not as the paid prime photographer. That would be too stressful. After all, wasn’t brain surgery nerve wracking enough? However, I always wanted to do wedding photography. The stress would never equal an aneurysm rupturing right at a critical moment during surgery. You’d never know if it never happened to you. I had some spectacular saves. No, it was not salvage due to incompetence. It was just a few miracle saves. No one ever died on my OR table. For that I thank whatever spirit guided my hand.
I digress. An example? My first is a vivid memory. I was just getting the temporal lobe exposed when the posterior communicating artery aneurysm let loose and ruptured. Blood filled the operating field in an instant. Muscle memory!? I just stuck a clip into the blood and released the clip. The bleeding stopped. Just like that! You have to understand that the bleed is coming up the carotid artery straight from the heart and you die from uncontrolled bleeding pretty fast. Like a bullet in a tire you are flat (dead) pretty fast. I looked around, (changed my underwear), and proceeded to look into the operating field. The clip had been applied perfectly. I mean, as in, we didn’t move that clip again. It was perfectly placed. A third year med student who had been observing me that day, years later at a national meeting: the student, now a fellow neurosurgeon, took me aside. He told me that that operation was the first aneurysm he’d seen and his impression at the time was that operation was how all aneurysm surgery was done. Silly me. I was trying to impress him?
…Friends. They don’t mind that I tote a camera to their weddings. And I shoot without pressure. And afterward, I donate my efforts to the cause. It’s a nice complement to be told that an image I took was treasured as much as any other taken that special day. It’s happened more than once. I’m glad my skill is sometimes appreciated. Oh?! This couple is still married. Happily?
The surgical gown in this picture dates back to the early 80’s. We stopped wearing cloth in favor of paper. (Cheaper than doing laundry.) Someone just went down for claiming the gowns would shield against Ebola virus. With all the lies in the world of late, this is just another sad admission.
Charlie Wilson got a high honor – obituary in the NY Times. He was a giant in neurosurgery. A hero – to many. He was a contemporary of my boss – a giant too – Joe Ransahoff. Well, not too contemporary, Charlie was more than a decade younger. He was the new brash West Coast guy that we at NYU competed with for a time. Like my boss he later remarried and had a fast car.
When I told my first wife that was my aspiration too, she replied, “But, I have all the money, honey.” Ransahoff’s first wife got ninety. “?” “Yup, 90%.” Connie told me when I asked his office manager about the divorce agreement. I’m doing better. But, no fast car.
Fame, fortune, success – what is it to be great? The man could operate. He had more/many high profile successes than I could ever claim. The rich and famous were happy to be operated upon by his residents as long as Charlie did the critical part. The operative failures are not mentioned. After all we are all human, not gods.
But there is a punchline to an old joke as you enter heaven and are surpassed by a man walking/jumping past you, “Oh him? That’s God. He just thinks he’s a neurosurgeon.” No matter. Charlie died in a skilled nursing facility. How sad? We all die. The legend lives.
Did you know he was a neurosurgeon? Not me. His show was black and white TV from the ‘50’s. It was still showing on cable in the wee hours in the 80’s. Huh? Well, Jules would be up. She was an infant. I got out of getting up with her. I followed certain rules: Sleep on the side of the bed farthest from the door. If you hear the baby cry, don’t move (in the bed). And finally, “Honey, I’m operating in the morning.” Lisa would watch bleary eyed as Ben solved another medical neurosurgery mystery. Then I would get queried in the morning to “solve the case.” Amazing! He did it all without CAT scan or MRI. Yes, he was a true legend. When Dave was born, he never cried. Lisa was too exhausted from Jules, so she left him alone, and he stopped crying.
This is a spine tumor. On the day we did this surgery I operated in the neck, in the thoracic spine (chest) and in the lumbosacral spine. We followed that with brain surgery. It’s always interesting. This poor patient was treated for an infection but was not improving. Several biopsies were unsuccessful to establish a diagnosis. Now he was weaker and in more pain. The mass invaded his sacrum – pelvic bone – and surrounded his spinal nerves and was threatening to take his leg strength and bowel and bladder function. It was pretty serious stuff. And previous procedures had everyone guessing what this lesion represented on the MRI scan.
Surgery was difficult as expected. The mass was completely in front of the spinal sac. It’s partly why the diagnosis was so difficult to establish with a extensive surgery. You can see the nerve sac. This turned out to be a tumor lying stuck tightly among the nerve roots. It had been growing slowly. About six hours later and the nerves and spinal sac were decompressed. We worked slowly under the operating microscope to get the pressure off the nerves. It was most rewarding to hear the patient tell me the next day that his severe debilitating pain was much improved. Some days end up pretty nice.
This is a brain tumor. And if it is in your head this is big trouble. It is benign and grew slowly. The only noticeable symptom was that the patient lost his sense of smell. It did not act like a stroke so the symptom was ignored until now. And there is swelling around this tumor so it is actively growing. Now it can no longer be ignored. Surgeons like fisherman like to exaggerate about size so here are the images and you can make your own guess. This one Is on the extra large side of the equation. It is not the largest tumor I have removed. My assistant shook his head in amazement because it was the largest he has seen me remove while he worked with me. But hey! I’m older. The task at hand is to get this tumor out without causing any disturbance to the surrounding brain.
Oh? Yes it is benign. And the sense of smell is gone because the tumor origin is right from that area. There are a lot of serious neurological structures to worry about like the nerves for vision and major arteries into the brain. Of course it requires a complex approach to just expose the mass. As large as the tumor grew, it is still a matter of millimeters between trouble and success. We spent some hours taking this out. In fact it was close to six. And… the end result was that the patient was fine! That is the only thing that matters in the end. I just wish I had met this tumor when it was a lot smaller. But since I’ve been here there are lots of people who have refused surgery in favor of just waiting. Gee!
And the patient – he will make a good recovery except for the sense of smell which was taken by the tumor growing.
This is a birth defect. Once in a while you have a run of cases that are interesting. In Jeddah everyone is wary of surgery. The reasons are myriad but mostly people are just plain afraid. I had some recent successes so for a few days I’ll post up some medical things.
This child was born with a failure of the spine to close over into a proper canal. So the lump is a combination of nerves and skin exposed to the air. The spinal cord begins as a plate which rolls into a tube which is surrounded by the muscle bone and skin. Failure of the tube to roll up results in this defect. It is largely unseen in the US for many years. Prenatal vitamins has pretty much made this so rare that I have not cared for such a patient in many years.
You can see that the nerve sac is incomplete and sticking out through the spine at its lower end.
Fortunately the defect may be low enough that the child will walk. His bowel bladder function may be incomplete. The repair is shown.
The wound is several days after surgery so there is a lot of swelling and bruising but the defect is covered and repaired now. Many more problems will face this child as he grows. This is the first step. The biggest challenge now was to make a proper closure and to prevent infection.
So a woman came to me with a scan performed three days ago. By now you should be able to see a large white ball on the left of the picture, which would be a very large tumor with some swelling. She’s lost her hearing but insists that she can hear the phone. She is unbalanced for quite some time. The tumor is in the balance area of the brain. She asks in Arabic that I order another MRI scan. Why? Because she doesn’t believe the results of the scan that she has already had. Ah, insurance! You’ll have to pay cash if you want another scan. She got up and left.
They use this term a lot. Here’s an examples. This is a 4 year old and this scan is 6 months old when I see the child. She’s blind which I notice immediately as she comes into the office in a stroller. My assistant still has some problems with simple observation. Sometimes just watching tells you a lot. This tumor (white) in the middle and on both side of her head is a killer. Two surgeons six months ago gave opposing opinions – operate/don’t operate. It turns out the surgeon who said ‘don’t,’ believed that this is inoperable. The ‘operate’ surgeon wanted to make a diagnosis and treat if it was possible. Neither surgeon was wrong, but it sure created a dilemma. And six months later with nothing done, here we are. The father was looking for a cure. And I was advised that should I operate and anything then worsen, I would be an easy target of blame. Wow! There are days when there are no right decisions. Moral, ethical, technical, legal, religious, no one wins here.
I showed this case to an orthopedic professor from Texas while he visited us. The first thing he said is that, ‘I don’t do worms.’ Then he sat. It‘s the case of an elderly man from Morocco who was becoming paralyzed. They operated in Morocco and saved his walking but now his bowel and bladder function was deteriorating. No treatment had been given after the surgery. I found tumor in the bottom of his spine, in the muscle to the side of his spine, and in his pelvic bone. And worse, in reading about this particular worm, it had a tendency to spread when you opened the cysts and the cyst fluid was highly irritating to the surrounding tissues. I started him on anti-worm drugs and then cast about for a surgical opinion. The next time the patient returned his wife patted me appreciatively on the arm. My assistant translated that she was telling that the patient was much better. He could stand and had better bowel and bladder control. Ok! I’ll take it! He still has a spinal sac full of worms and his spine is likely to collapse. And we haven’t nearly begun to treat the infection with enough medication. But anytime you are in the plus column – take it.
Here’s one more for a few select colleagues who look in on my blog from time to time. This is an older woman from Yemen. She has had a biopsy a year ago and was told she has a tumor. The pathology is not available to me. What she has is a tumor that has taken the skull base and the upper two cervical vertebrae. That means here head is sitting on her shoulders without any support. Having just attended the Jeddah Spine Summit, I found several surgical solutions. The good thing about a meeting like this is that there is never a time when something is completely inoperable. In other words, beware. I don’t walk on water and still must dress one leg at a time. But it’s good to have some alternate suggestions. So far the patient has not returned. Which in the scheme of things might not be the worst that could happen.
I have to say that at this point, ‘What is there that I haven’t seen neurosurgically?’ And my answer is that when you go somewhere else, you’ll find out. Even if you have no idea, understand that this is a side view of the neck and you are looking at the spinal cord. It has dents in it and there’s a white streak in the middle. That’s a bad thing to see. It’s an automatic recommendation for surgery when I see it. Others might disagree, but I have seen, even recently, what happens if you fail to act. So this woman comes in… and after I look at the scan and go through my recommendation for surgery, I look closer and see that this image was from 2008 – five years ago! Well, I have now learned that if you are indeed lucky, you might go on for years and never get worse.
Just when I was questioning my sanity and about to throw over what I believed, a 39 year man came to see me. he’s virtually paralyzed. He has contractures so bad that he can’t even straighten his arms or legs. He has had bed sores so bad that they required surgery to repair. And he has the same condition. His family wants to know how soon after the surgery he will begin to walk again. I can only say that I don’t do magic.
The serrated T-handled instrument at the top is a trephine. These are battlefield surgical instruments. They are replicas which can be purchased for the historical demonstration here. Trephines were used in ancient Egypt for access to the brain. They were described by Kocher in a 1914 book in which he published techniques on how to use the device. The trephine is basically a circular drill bit the one could get at Home Depot today. We don’t use such devices in present day neurosurgery.
The center point is to drive through the skull to position the bit before you proceed to drill. If you look closely you will see the point is too long. It will pierce the brain long before the drill has made a hole in the skull. Crude and dangerous, but then again if you have to use this on a battlefield casualty, it’s probably not going to end well.
Another thought came to me as the demonstrator described how the other instruments were used to probe for and remove the lead balls in the wounded soldiers. Why? You don’t remove the lead. That’s not what is going to kill you. It’s damage to vital organs and the uncontrolled bleeding that will kill you. General anesthesia is not until the 1900’s, so bite the rawhide!
To this day though some things don’t change. It’s been a while since I had to remove a bullet. But I still ask for a metal kidney shaped basin. In today’s OR’s it’s all plastic. The nurses scramble around to get one from some back closet shelf. Then carefully holding the bullet fragment 12 inches above the basin, I release it to hear the satisfying clunk of bullet in the metal basin. For those of you who watched ‘Gunsmoke’ on television as a kid, you will understand.