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If you or your child has a VP shunt,
CLICK HERE to access our FREE printable “Is It a Shunt Malfunction?”
It’s a simple tool to help clarify and track signs and symptoms.
I use this to analyze symptoms that are concerning, and it helps me communicate more clearly with my son’s neurosurgical team.
Our son was born with a neural tube defect – myelomeningocele – the most severe form of Spina Bifida.
He requires many specialists to oversee his health, and we’ve discovered how difficult it can be to find doctors that listen carefully and value our input!
He requires many specialists to oversee his health, and we’ve discovered how difficult it can be to find doctors that listen carefully and value our input!
We lived a nightmare in the Spring of 2018 when we were once again reminded that good doctors can be hard to come by.
Doctor Problem
I needed a new doctor for my son, and fast.
This was a complex problem for at least two reasons:
ONE – I didn’t need a pediatrician (the most common children’s doctor in our area). I needed a pediatric neurosurgeon.
TWO – there weren’t any pediatric neurosurgeons in the state left for us to consult with. The neurosurgeons from the only children’s hospital in our state had all been fired. Fired by us.
My son has hydrocephalus (overproduction of CSF in the brain), which is a complication of Spina Bifida. His hydrocephalus has been very complex to treat. Some of the top neurosurgical doctors have completely misread him and overlooked the presence of active shunt malfunctions. They’ve even gone as far as recommending unreasonable surgeries and interventions.
Since our child doesn’t follow the textbook, neurosurgeons show their true colors when our son is in crisis. Children are unique individuals, and they don’t always show the signs and symptoms neurosurgeons are taught to expect. We’ve learned this the hard way.
I’ve seen our son go through enough “head pressure incidents” to know how his body acts when his CSF (cerebrospinal fluid) is not properly draining. He doesn’t usually show the signs and symptoms the neurosurgeons expect, and when he’s experiencing head pressure and/or a VP shunt malfunction, issues are often not visible on MRI and CT scans (a VP shunt drains excess CSF from the brain, but it is prone to clogging and malfunctioning).
This past spring, I was fed up with the closed-minded, ego-driven doctors I’d been bringing our symptomatic son to see. They made it very clear from the beginning that they were not willing to listen to his history, but since they were the only option in the state, I hoped they would “come around.” I scheduled many in-office consultations for his hydrocephalus symptoms, and he also ended up being admitted through the emergency department a couple of times. But with each incident, I was told that my interpretation of his symptoms simply could not be true.
This team of four neurosurgeons squelched all my hopes of finding a doctor among them that would think rationally.
It was 6 long months of fighting, and I was done.
Done with not being listened to.
Done with being patronized.
Done with our little guy suffering needlessly for months on end.
I was not going to sacrifice our son’s quality of life on the altar of these neurosurgical egos.
If we’d gone ahead with the surgeries they were trying to railroad me into, we would have gone against everything we knew to be true. Past issues with his shunt were resolved by adjusting the VP shunt until a solution was found, but they were unwilling to do this unless we agreed to the other surgical interventions.
I once again found myself in the uncomfortable position of needing a new doctor for my son, and fast.
My baby was living every moment in pain. The doctors had written off the severe clinical signs happening right under their noses. They said it was just the “new him” following the changes from brain damage.
These symptoms they were overlooking included:
- stridulous breathing due to vocal chord paralysis (noisy, high-pitched sound when breathing in)
- dysphagia (swallowing difficulties)
- hypertension (high blood pressure)
- tachycardia (elevated heart rate)
- and apnea (pauses in breathing causing desaturation)
Their “bandaid surgeries” would have silenced his noisy breathing (with a tracheostomy), and bypassed the dysphagia by depositing food directly into his stomach (via gastrostomy).
However, these surgeries would not correct the reason he had these symptoms in the first place. Nor would they improve the severe pain he was in, which was becoming more unbearable as time passed. I was aghast they expected him to live with this pain that was written all over his vital signs.
My little guy needed help, and I was determined to get it.
Egos on High
It was so scary starting from scratch again, with no open-minded neurosurgeons on the scene, and a potentially emergent situation on our hands. Yet it was SO MUCH SCARIER to consider staying with the egotistical doctors that refused to open their eyes and ears.
These doctors we’d just fired were not handpicked by us and never would have been if we had the choice. An emergent situation threw us into their laps 6 months prior, and it was a rocky relationship from day one.
Doctors who elevate their egos above the welfare of their patients are hurting people.
In our experience, a patient receives the best medical care possible when their health practitioners demonstrate humility and genuine care. And yet, the difficulty in obtaining doctors like this completely astounds me.
If a doctor does not keep their ego in check, then misjudgment and blunders are inevitable. It’s a known phenomenon in medical malpractice for a doctor’s ego to act as blinders. In an article by Dr. Travis Bradberry, he says:
Smart people are more prone to silly mistakes because of blind spots in how they use logic. These blind spots exist because smart people tend to be overconfident in their reasoning abilities. That is, they’re so used to being right and having quick answers that they don’t even realize when they’re blowing it by answering without thinking things through.
It shouldn’t be so difficult to find a neurosurgeon without an egotistical “god complex,” but it’s been very common in our experience.
Thankfully there have been a few diamonds in the rough, willing to think outside the box. Our son would not be functioning at the level he is currently if it weren’t for these few surgeons, and we’re so grateful for their care.
Thankfully there have been a few diamonds in the rough, willing to think outside the box. Our son would not be functioning at the level he is currently if it weren’t for these few surgeons, and we’re so grateful for their care.
Valuing parental questions and input is a lost art in pediatric medicine.
To work together as a care team, the neurosurgeon must keep the parent at the forefront of the team. Parents know their children best and are ultimately responsible for their welfare (we live with the consequences of every decision, moment by moment!).
Yet many of the neurosurgeons we’ve dealt with, including the students/residents/fellows coming up through the ranks, have had serious attitude problems, which bleeds into everything they say and do.
I can tell very quickly if a doctor views my child as a statistic to be squelched, or if they are instead genuinely interested in treating him as an individual.
When I carefully communicate my child’s history, and am berated, scolded, undermined, or simply ignored by my child’s doctor, they are not focusing on the best interests of my child. There is a “tug-of-war” that is palpable when my input is discounted and rejected, and this horrible game has consistently led to terrible miscalculations on the doctor’s part.
The input of parents and patients does NOT seem to be highly regarded among many neurosurgeons, and it makes me wonder if they’re being taught the importance and value of this. The majority of these specialists are coming out of school with VERY wrong ideas for kids like mine, and they seem to think their education trumps what parents know about their children.
Something has to change.
According to my son’s current neurosurgeon, the treatment of hydrocephalus is an art. Making decisions based on the individuality of a patient only makes sense.
But not every doctor uses logic when treating their patients.
But not every doctor uses logic when treating their patients.
Because of this, there are doctors out there hurting kids.
I know this…
…because they’ve hurt mine.
Back to Square One
So we needed a new doctor. Our son’s quality of life (and perhaps quantity) was fading fast, and we were back at square one with no doctor to turn to.
One of my friends (a special needs parent herself) had a great idea. She suggested I pull up the research related to my son’s condition that I’d poured over so many times. Instead of examining the data in the studies, she wondered if looking at the names of the doctors that had done the research would help me find a neurosurgeon that could help my son. I dove back into PubMed’s pages and started making a list of doctors from the studies I had bookmarked.
PubMed is a tool that’s intended for cataloging research studies. It felt a little ironic to be using it as a directory for medical professionals, but it was an ingenious idea. Since I was choosing doctors based on the knowledge they possessed, instead of the letters after their names, it ended up being a fruitful endeavor!
I soon had a list of several neurosurgeons and proceeded to track down their current practices. There were doctors in Canada, several on the East Coast, some in the South, and one or two outside the US. I ruled all of those out quickly since they weren’t on the western side of the US and within reasonable driving distance.
There was one doctor on my list who handled one of the best studies that I could find – and he happened to be the closest doctor to us! Located in California, he was three states away, but only a 7-hour drive. We made a prompt appointment with him, and he was a game-changer.
I had been treated like an insane person for months while my child was suffering through increasingly difficult symptoms.
I spent countless hours filtering through medical studies, tracking my son’s symptoms to compare with previous hydrocephalus issues, compiling facts to cross-check with these abnormalities – and all of this was wasted on the doctors whose care was misguided.
I spent countless hours filtering through medical studies, tracking my son’s symptoms to compare with previous hydrocephalus issues, compiling facts to cross-check with these abnormalities – and all of this was wasted on the doctors whose care was misguided.
All along, I was caring for my struggling little man, many times crying with him…and praying for relief.
By the time I sat down in front of this new neurosurgeon, I was so exhausted.
By the time I sat down in front of this new neurosurgeon, I was so exhausted.
After 3 1/2 months of being told there was nothing neurologically fixable, and that invasive surgeries were needed to deal with the awful symptoms, this neurosurgeon in CA was a beacon of hope.
He listened very carefully, keenly studying my hand-drawn charts and notes.
He listened very carefully, keenly studying my hand-drawn charts and notes.
And he said I was being reasonable and logical.
I could have cried.
REASONABLE AND LOGICAL!
Four neurosurgeons in the previous hospital would hardly take me seriously, and this one was determined to do what it would take to help our child thrive.
I could have cried.
REASONABLE AND LOGICAL!
Four neurosurgeons in the previous hospital would hardly take me seriously, and this one was determined to do what it would take to help our child thrive.
Our son was given a shunt surgery by this neurosurgeon, which resulted in a 180-degree turnaround in our son’s quality of life.
Shedding torturous symptoms that no adult would put up with for as long as he was forced to, he is no longer in severe pain from mismanaged hydrocephalus.
We thank God for guiding us to a kind, compassionate neurosurgeon. This man recognizes his limitations, and readily admits that neurosurgeons don’t know why hydrocephalus acts as it does. They can observe what is visible, documenting ventricle sizes and pressure gradients, but brains often react unpredictably. Large ventricles don’t always mean trouble, and smaller ventricles can’t rule out problems.
Treating hydrocephalus is an art.
Treating hydrocephalus is an art.
My child is not a statistic in his care, but an individual with a unique brain and distinct needs.
Moral of the Story
So the author of a research study is now my son’s doctor.
An ingenious suggestion from a friend became a complete turnaround in my son’s quality of life.
Are we completely out of the water with everything resolved? No, and that’s not how hydrocephalus typically works – especially when a person is shunt-dependent. Though it is mostly under control for now, we are continually watching and observing since this status can change abruptly for unknown reasons.
He’s currently in a stable place, and we’re grateful for each day. Our son’s body has been able to switch its focus back to recovering from the severe brain damage he suffered, and he’s thriving.
My biggest takeaway from this is:
there’s always another doctor out there.
Whether it’s a complex wrist fracture, a chronic illness, or a GP that thinks they’re big stuff, WE ARE THE PAYING CLIENTS, and this is not the only doctor in the world. Hitting a brick wall with a doctor (or even a whole team of doctors like happened with us) does not mean we have to settle for something we’re uncomfortable with.
A fresh set of eyes can make all the difference in the world, and our son is living proof.
This was not the first time this happened to us. We found ourselves without a competent neurosurgeon when we lived in the Midwest two years prior, which I’ll write about someday. Knowing your child needs help, and having a doctor that is unwilling to think “outside the box” is a very hard place to be!
Do You Have a Similar Story To Tell?
Let us know in the comments!
If the care you are receiving seems sub-par, or makes you uncomfortable, I very strongly recommend getting a second opinion (especially if you’re dealing with complications from hydrocephalus – many neurosurgeons act like the treatments are cold, hard science, but that is so far from the truth).
If you or your child has a VP shunt,
CLICK HERE to access our FREE printable “Is It a Shunt Malfunction?”
It’s a simple tool to help clarify and track signs and symptoms.
I use this to analyze symptoms that are concerning, and it helps me communicate more clearly with my son’s neurosurgical team.
