The head of our pediatric practice has lamented the current state of incoming MDs more than once. An old-school, military trained man with a quick wit, excellent problem solving skills, and more passion for his patients well-being than any physician I have ever met, he can also be cantankerous and short-tempered when it comes to the incredible bureaucracy, greed, and policy regulated ignorance that often runs pharmaceutical as well as insurance matters.
That said, my son and I have been taking tours through the world of diagnosing. More than two years ago, I developed what I call pencil pain on my upper left side. It feels like someone is taking the rubber eraser end of a pencil and slowly sticking it at an angle up into my body cavity, to about a third of the length of the pencil. It comes and goes in intensity, and can be accompanied by tightness and uncomfortableness across my upper back and matching right side. After some of the preliminary tests (MRI, upper GI, Gallbladder processing test) my gallbladder- that is on the RIGHT side- was determined to only operate at 10% at best, and needed to come out. It went. The surgeon later said he was glad it got pulled, because it would have gone necrotic (organ death and subsequent infection). So far so good. But the left side pain went on as usual.
I was told nothing showed up regarding the pancreas or liver (other than my liver being slightly compromised-fatty- from my lack of exercise, age, and persistently high triglycerides). So, given the lack of gallbladder (that lovely mediator of all things spicy and fatty), I needed to go on a low fat diet and small portions the rest of my life. Not news, really.
A visit to a GI man said, after a short conversation, Its probably musculo-skeletal. Co-payment please, and here is a free sample of the most expensive acid reflux med on the market (I do not get acid reflux as a rule, and when I do Maalox works just fine). This was a complete waste of my time. I threw the sample away.
My exasperated and often inattentive GP (general practitioner, your first defense against illness) ordered a stress test. Normal. Good to know, I thought, given my family history of heart disease.
I have started to avoid eating. I find myself hungry, but dont eat. I subsequently feel proud of becoming stricter with myself (and losing weight), but most importantly dont have surges of pain. GP says it could still be gastro-intestinal (duh), but unusual to be that high on the body. All the MDs I have seen told me, as if I were a mentally defective ten-year old, that there isnt really much on your left side. Funny, I always thought there was because I have to clothe that part of my body, but what do I know.
As of yet, we have not changed GP offices (thats a whole other story) but intend to do so soon for all the adults in our family. The pain lingers on, waking me up occasionally just to say Hello. Not going away!. Yeah, I know.
As for my son, he developed a growth that actually looks like it has a hold of his neck skin just to the left of center, and slightly above the fold. As if something, starting to look slightly purple underneath, grabbed the skin and pulled in at that point, like you might do when sewing and making a pucker. But there is an inch round creature making the pucker, not just the pucker itself. It came to visit in early November, and never left.
First Ped (young woman new to the practice): infected lymph node. It will go away. It didnt.
Second Ped (one of the founders and a good pragmatist): Not a lymph node. They dont present this way. Heres a referral to see a great ENT (ears, nose and throat surgeon). We did.
ENT: Get a CT. Its probably a thyroglossal cyst (congenital problem, complicated surgery required; hey- Im a mom. I read about it until I was blind).
In the hospital once we were in the room for CT appt.: Oh, hes four. Im not sticking him more than once. You really should come back for a sedated CT (he was busy watching a video quietly; and ENT said he didnt like to do general anesthesia on people so young). It got worse from there, the techs having decided they would not do the CT and all the skilled phlebotomists snoozing I guess (he was stuck a total of four times, by two people, and they were dubious the IV would hold). We left, after being told they didnt have time to really work with children. Well, we really dont have time to waste our childs life or money.
After playing phone games with everyone affiliated with our insurance, we get approved for a CT at Johns Hopkins. My son gets pneumonia over the holidays. The CT will have to be rescheduled. I email the ENT at Hopkins and call her staff about the appointment and CT. In sum, I get told they are too busy for us and to go elsewhere. Fine.
Play phone games with the insurance and Peds office again. Feel stupid.
We scheduled another CT at university-affiliated hospital an hour and a half away. It went smoothly, the pediatric sedation team gave him an oral (not the general anesthesia the previous hospital wanted to use), he only was stuck once, and it all went well.
Radiologists report: Not a thyroglossal cyst. Other possibilities: bronchial abnormality (fancy way of saying another class of congenital problem, from our old evolutionary genes and gills surfacing during fourth to fifth week of pregnancy, then having to dissipate), infected lymph node, and others.
Look at CT picts at home. See the size and shape of the growth, and changes in density. See the thin, worm-like thread attached to it that seems to go back. See the other thin like thread with two ends that goes down and forward. Wonder why no one has ordered baseline blood tests. Get reinforcement from family (one whom is a surgeon) that being persistent as a parent is a good thing.
See original ENT, look at CT with him: Its a thyroglossal cyst. 98% of what it probably is: the thyroglossal cyst (requiring the removal of approx. a third of the hyoid bone and restricted lower facial and upper neck muscle use for life, and diminished vocal expression) or bronchial abnormality. Rest lymphatic. Small probability of cancer, benign or malignant.
Still no ordering of blood tests.
Second opinion recommended by ENT. Appt. made by office staff at Peds for two and a half months out with ENT an hour an a half away. Parental outrage. Going on eleven weeks at this point. Try to get appointment moved up, or put on a wait list. Rude office staff. Appeal to original ENT. No help. Get a call from head of Peds practice, which has not even read the ENT opinion. Tell him. He gets into instant action, and orders baseline blood work. Next day, first portion normal, no infection indicated. Great! Day after, no thyroid disruption evident in blood work. Good! Also, the man went straight to the second ENT and got the appt. moved up to thirty-two days from today, not several months. Spoke to us with kindness, knowledge, and support. I want to hug this man- make him cookies or something, but he just had heart surgery himself so I cant bake for him, and chicken giving in addition to co-pays went out about seventy years ago.
Now, we wait.
I read more. I realize both major probabilities of congenital defects are a bit like saying schizophrenia. A class of cause, with many attendant problems possible. Also, that other than the blood work there is no in-between tests to give more information. The growth needs to be removed intact (no biopsies), and pathology done. Even so, causal issues may lack clarity. As the original ENT said, if you dont take the hyoid portion out then, youll have to do another surgery because growths will continue to form from the malformed system. Great. Step A to step Q with no stops in between. We are on the express train in medicine, driven by a series of revolving, conflicting diagnoses.
My son was a twin. The other died, and was miscarried a little after the fourth month. I believe they were fraternal, but no one is sure. We didnt even know we were having twins, so the miscarriage was a shock- and the worst day of my life when we thought it was the baby we knew we had. When he was shown dancing around on the monitor, we were flooded with relief. Rest, watchfulness for a few weeks as the cervix closed fully again, and all was fine. Did the twin die because of something that happened in those first four to five weeks? Did I do it? Did it also cause this abnormality in my son? I will never know. More to the point, is there anything else wrong with my son I do not know about (the radiologists report evaluated the whole series of CT picts and said the rest looked normal)? What else can I do?
I wait. We wait. My son has seen the CT scan photos and thinks the pictures of his skeleton are cool. He knows hell have surgery. He hates being stuck, but knows hell have to do it again. Hes being great about it all, in only the way a soon-to-be five year old can. He knows he cant sign up for soccer this spring because of his surgery, but that hell be eligible for summer T ball and thats great. He also knows we do the kindergarten visit this spring, his new school for the fall.
We struggle to pay all our bills, budget for the repairs the house needs, and cut back where we can. We are not unlike millions of other people in this country, and very grateful to have health insurance (which Husband pays for in big premiums every month through work, like everyone else we know). Who knows what the future brings? We wait, and wonder how many physicians well see, and how the joke will end.