Medical News: Episode 3

Medicalby Anniel7/9/15
Most of the time patients or their parents misunderstand how diagnoses are actually made and how cures come about. I knew so little about what is important. Like most other people I thought that every symptom we came up with tells something about the condition that will help in finding a cure. The symptom may help in diagnosis, but only if the doctor is listening. That it might help in finding a cure may not be true at all.

One day at the Ronald McDonald House I was sitting in a chair knitting and listening to my daughter, four other kids and two parents who also have Pseudotumor, discussing their medical options. Suddenly one of the girls began to hiccup in an extremely violent manner. All the people there laughed because they knew that people with PTC/Chiari have such horrible hiccups they feel like their sternum and clavicle, or even their ribs, will break with each spasm. One of the mothers told a story of her most frightening and embarrassing bout with hiccups, then the kids all told their stories about the same issue. I finally asked if anyone had told the doctors about this symptom, which all seven of them shared. Everyone looked at me blankly, then one of the kids said, “Why would we? No one really listens to us.” That shocked me because I thought they all talked to and loved their doctor.

A few days later I asked Cate’s main doctor if he knew of the violent and painful hiccups his patients have. He shrugged his shoulders and said, “So they get high CSF pressure on a nerve that causes hiccups. What about it?” That was the end of the discussion. Just as an aside, about five years later a group of mothers was having a conversation when one of them said, “By the way, Doctor A told me today that he’s come up with a new symptom, violent hiccups.” Yeah, well . . .

A question I am frequently asked, even by friends who have watched our whole journey is: Why don’t you just get a new doctor? Really? Do they think we haven’t looked around? There is a reason almost everyone who has the same condition as our daughter winds up at the same hospital with the same doctor. We all know what happens to each other. One need only Google The Chiari Institute in New York City to see what some of the problems are. The story of the Chiari Institute is even more sordid when you know the people involved.

In addition to Chiari and Pseudotumor, some of the patients develop many autoimmune disorders and other conditions. Our daughter, for instance, has been diagnosed at different times with: Systemic Lupus Erythmatoses; Ehlers-Danlose Syndrome, Hypermobility Type; Eosinophilia; Narcolepsy with Cataplexi; Slit Ventricle Syndrome; Hashimoto’s Thyroiditis; Hashimoto’s Encephalitis; Empty Sela Syndrome; Angular Chelitis; Sjogren’s Syndrome; Retroflexed Odontoid; Optic Neuritis; Torticullis; TMJ; Reynaud’s Syndrome; Palinopsia; PCOS; Barratt’s Esophogitis, and she has had many bouts of Chemical Meningitis from blood in her CSF.

Whew! And that’s the short list. She has renamed that portion of her condition as PERVASIVE AUTOIMMUNE DISORDER, which says it all.

I had maintained from the beginning that most of her problems were thyroid related. No one was listening, everyone was getting tired of hearing me say so, and even insulting me, so I quit speaking of it. After several years Cate began going in and out of mini comas. She finally fell into a profound coma and we were invited into the ER room to hold her hand while she died. Her Glasgow Score was near the death score of three and the docs were ready to intubate her when they decided to give her a blast of Narcan to see if it would shock her awake. It did.

When I said it was my family’s thyroid disease creating the problem the docs finally listened. Perhaps I need to further address this disease because of what is happening now about her anti-thyroid antibody levels and what might actually be going on with her. This is a condition personal to Cate, but it may clear up some misconceptions about things that are actually possible, and because of what it showed me. I’ll write about it as a separate article, only if it’s necessary.

I have said before that symptoms alone won’t tell a doctor how to find a cure. After considering how the hiccups had been dismissed I put my mind into figuring out what things need to be answered that might actually be relevant in the search for a cure for PTC.

Pseudotumor is classed as a form of Hydrocephalis, known to some as “water on the brain.” I have met a few people with what I suppose could be called “regular” Hydrocephalus, although there are other forms. This condition causes CSF to collect on the outside of the brain and central nervous system, creating high pressure between the brain and the skull and pushing outward against the skull and spine. The high pressure on the brain causes enlargement of the head and other problems. In 1949, after the death of his own child from Hydrocephalus, a gentleman named Philip Holter, one of the unsung heroes of America, invented a spinal shunt which drains excess fluid from the Central Nervous System. Shunting is also used in the treatment of Pseudotumor, but with less success.

After Cate’s diagnosis it seemed as though we met and spoke with Hydrocephalic patients in very strange circumstances. We learned that shunts could be placed in tiny babies as soon as they are diagnosed with Hydrocephalus. Drainage tubing several feet in length is tunneled into the abdomen of very little children and unwinds as they grow. I met one beautiful 14-year-old girl who, at 5’10”, had finally “outgrown” her tubing and was having a new shunt and tubing installed for the first time since her birth.

I cannot tell you there are never problems with shunts in Hydrocephalus, but not as many as in Pseudotumor. In Pseudotumor the pressure is not on the outside pushing against the skull, but the CSF is pulled inwards and the pressure works almost separately against nerves and structures within the brain and spine. When I asked why this pulling inward happens the answer was, “No one knows.” An answer to that question was one I thought would be of great help in curing the disease.

The other problem I isolated in my mind as very important is why the shunts fail so often in Pseudotumor. Sometimes a shunt will fail within days, or even hours. They get clogged by what the kids who have the condition call “goop” or “slime”, as in, “My shunt was slimed shut.” Patients and physicians alike know that they are in a holding pattern until another shunt revision is needed or the tubing draining into the abdomen becomes blocked so it needs to be rebored (yes, just like it sounds, from the shunt site in the brain or the spine through tissue down to the abdomen or elsewhere). I cannot count the number of shunt revisions Cate has had, either from infections, slime, blocked tubing, or all of the above. I did ask what the “goop or slime” was and was told it is “protein and other matter.” Protein from what, and what is the “other matter?” I was told I didn’t really need to know.

Doctors are also divided as to whether the problem of fluid build-up is from overproduction of CSF, or from failure of the Arachnoid Villi to drain the fluid efficiently. The Arachnoid Villi is a webbing wrapped around the brain and spinal cord, which is highly concentrated at the top of the brain, through which the CSF is thought to be drained.

This brings us to EXTERNAL Lumbar Drainage, which is done by performing a lumbar puncture and placing a drainage tube into the CSF surrounding the spinal cord. The fluid drains outside the body into a plastic bag, with the amount drained controlled by weights on a pole. Before a shunt is installed, a new patient is put on External Lumbar Drainage for 72 hours to determine if a shunt will actually help. If they respond well and feel better, then a shunt is placed. A big HOWEVER here, while the patient may feel great on External Drainage, as soon as the shunt is placed most of the symptoms return, and, of course, the “goop” begins to cause problems. Cate’s doctors have finally admitted that she produces far too much CSF, but she might have a problem of both production and drainage.

So, here are the questions I have thought for a long time needed to be answered:

First, why does the pressure pull inward, inside the brain and CNS, in Pseudotumor?

Second, what action of the brain causes too much fluid to build up? Is too much made, or is it failure of drainage that causes the problem? Or are both involved?

Third, what is the “goop” that clogs the shunts?

It seems like these questions are basic to finding the causes of Pseudotumor.

MORE TO FOLLOW in Episode 4. • (803 views)

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7 Responses to Medical News: Episode 3

  1. Timothy Lane says:

    Have you discussed any of those questions with your doctor? If so, what answer did you get (if any)?

    • Anniel says:

      Timothy, I have asked all these questions a thousand times, but is anyone listening? In fact I have been thinking a lot about active listening, without it we fail to understand each other in any form. As I said above I have been ignored, sneered at, laughed at, and generally sent packing when I have asked questions. How could I, a mere uncredentialed mortal, ask questions of people who are so high and mighty? Bronwyn’s neurosurgeon has helped our whole family in so many ways, but he is a rare person. There have been times I’ve been furious at him, but he takes it and forgives me and I know he loves my daughter as though she is the daughter he never had. He and Ben Carson are colleagues and friends, so we knew they sometimes consulted about her. I have wondered if someone as kind and courteous as Carson would listen to me and actually consider what I think.

  2. Annie — It is so frustrating dealing with doctors, perhaps because we have put them on such a high throne and we expect more than they can deliver, and perhaps because they have put themselves there and are too arrogant to pay much attention to the rest of us. Good health is such a blessing and I thank you for sharing this to help us remember to be grateful.

  3. Kung Fu Zu Kung Fu Zu says:

    Annie,

    I can empathize with you, one story at a time.

    When my son what about 18 months old, a number of medical tests had to be performed on him. In order to run these tests the hospital personnel had to give him a liquid which was supposed to make him sleep. Unfortunately, my son is like me and sedatives and pain medication don’t work well on us. They had to give this to him two or three times and he was very unhappy. My wife could no longer stand it and went over and took him from the nurses who were handling him. She took him to a quite room away from everyone in order to sooth him and quiet him down.

    Now try to get the picture, the nurses have been having trouble with my son for at least half and hour and are not able to handle him properly. In fact, they have been handling him fairly roughly. He has been screaming bloody murder for most of that time and is extremely worked up.

    My wife is having some success calming him when one of the nurses comes in and says that she the doctor told her to put some eye-drops in my son’s eyes to dilate them for another test. My wife says that now is not a good time. The nurse persists moving toward my wife and son with the plastic bottle of eye drops raised. My wife again says not now and tells the nurse to go away. My wife then turns from the nurse who reaches over my wife and tries to open my son’s eye in order to put the eye drops in, regardless of what my wife has just told her.

    This is when I intervene and let the nurse know in very clear language that she should leave and not return. She starts to get snippy with me so I decide to teach her a very harsh lesson. Knowing how face works in Asia, I begin to tear down her face in front of her colleagues in methodical way. After I am through, one must question her education, her intelligence, her competence, her sanity and her antecedents. I warn her not to show her face again and that if she has any problems with what I say to call in the doctor so I can give a report of her incompetence. She left and didn’t return.

    From that time on, nothing was done with or to my son unless either my wife or I was with him. Even when they ran an MRI on him, my wife stayed in the room where the doctors controlled the machine, even though they asked her to leave. She didn’t leave.

    I suppose one couldn’t get away with this today, but when it comes to my family I don’t have to take crap from any stupid educated idiot wearing a nurses uniform or doctor’s smock. I think too many of these people take advantage of people who are very worried about the health of a loved-one.

    Fortunately, I have learned to control my temper somewhat better.

    I have more such stories. For example, an anaesthetist almost killed my father as I watched in the ICU.

  4. Anniel says:

    All: I have been watching the doctors I know and how they are coping with ObamaCare. I think we are all in for some very interesting times as the fascists attempt to control absolutely everyone. I keep wondering when their own lies will finally destroy them. In the meantime, Bronwyn is coming home to live, and I have no idea how she can. God will have to care for her needs.

  5. David says:

    My wife had cancer many years ago and she has successfully outlived it for over 35 years now. But nothing during that time comes more to mind than the carelessly callous doctor who told me I should have her “put her affairs in order”, because this form of cancer is 75% fatal. And with that he walked away.

    Since that time I’ve had some good / some bad relationships with the medical establishment and on the balance it seems to work ok.

    However, I did do some research into how the AMA got started and what’s at stake financially between medicine, pharmacology, big business and politics. What I found shocked me to the core.

    Though the delivery layer – the nurses, doctors, therapists can appear to have a ‘caring’ persona, I have never forgotten that medicine is all about money. How it can be made, how it can be prolonged, how it can be saved. This seemed to be a little ‘heartless’ to me on the face of it.

    Ostensibly, the federal government’s recent takeover of the health industry was supposed to guarantee improvements over this ‘heartless’ private-sector control of this part of the economy. But what I’ve seen thus far is the complete opposite. Higher premiums, less care, long waiting lines, etc. The delivery layer is beginning to cultivate even less caring – and sometimes monstrously callous individuals. At least in the private sector, capitalist method, competition between the various segments provided some options. With the government now involved, those options have all but evaporated and the decision makers at all levels have only political agendas.

    So sad, really.

    • Anniel says:

      David, I’m so glad your wife is well. The struggle with cancer can be devastating to a family, and the doctors who become so jaded about the needs of the people around them are so frustrating.

      I’m just about to the end of what I had planned to write, which is such a truncated version of our story and what goes on with medicine. Then last night I dreamed about a Dermatologist Bronwyn was referred to for some terrible sores on her mouth that nothing would clear up. This woman walked into the room and began right at the door diagnosing what Bronwyn had, what it signified and how to treat it, not just the sores, but everything she has. The doctor’s name is Elaine Kung and she is the smartest woman I have ever met, and one of the nicest.

      The national politics of medicine is a crime, and there are always the added layers of politics within the hospitals themselves. Because Bronwyn has to be at a teaching hospital we have watched the good, the bad and the ugly. I need to think more of the good.

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