Okay, so I'm not necessarily thinking that I have a brain tumor.
However, in fact, in January 2012 I was found to have a mass in my sphenoid sinus. The sphenoid sinus lies right next to the brain stem, right where the hypothalamus lies and directs autonomic functions by sending hormones to the pituitary gland.
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| The sphenoid sinus is the deepest one, located next to the brain stem where autonomic functions are governed. |
And, as you know, sports fans, I identified dysfunction in my autonomic system long ago in my quest for answers to my health problems. For instance, the hypothalamus controls such autonomic functions as sleep and wakefulness--identified in my case as idiopathic hypersomnolence (in other words, I sleep way, way too much and am powerless to change that), breathing (an ongoing problem), appetite (another problem for me these days), heart rate (a possible problem for me, as identified on a stress test and ECGs), temperature control (I'm about 20 degrees warmer than everyone else, and not from hot flashes), and more.
Symptoms of brain tumor/cancer listed at the Canadian Virtual Hospice include:
- increased sleepiness - I obviously have that;
- decreased ability to move around - very clumsy these days, including a fall I'll discuss in this episode;
- trouble speaking or understanding conversation - I've already posted on my losing some fluency while talking and very frequently using weird substitutions for words (substitution aphasia);
- loss of memory and especially the ability to form new memories - I can still form new memories, but I'm not nearly as sharp about things as I used to be and have noticed some real holes in my memory for recent events;
- weakness, which may affect only one side of the body - I definitely have overall body weakness, and today I had a weird weak feeling on the right side of my face;
- seizures - None of these, thank goodness;
- extreme mood changes - I don't think this is going on, but I do know I've had some despondent moods lately far beyond what I normally feel.
I recently posted about increasing headaches that are intractable to all meds I've tried, including the Tramadol prescribed to me because I'm not supposed to take NSAIDS due to my (mild) kidney disease. But in desperation I did take NSAIDS when the Tramadol didn't work, and yet nothing really helped. I just suffered with it for days and nights, five or six or so.
Of course, masses in the sphenoid sinus can cause headaches. In fact, I spent a little time researching those masses once again. I'd already read that all sphenoid sinus masses should be investigated. In my case, that wasn't done when it was found early in 2012, nor has anything been done since. My Ear, Nose, and Throat (ENT) specialist told me it was just a polyp and not a problem.
And who am I to argue that I'd seen literature saying it should be investigated anyway? You have to pick your battles, as I've learned--and what I've actually learned, basically, is don't even bother to battle because your research and theories will be utterly ignored, if not ridiculed (as happened to me by a neurologist at Johns Hopkins).
But now that I have these new symptoms, I'm going to take that earlier report of the sphenoid mass to the eminent Dr. A., my neurologist, when I see him in April. I already reported in The Mary Dell Show recently how disappointed I was when I called his office about the headaches and his message came back to me as "If the headaches are bad, go to the emergency department," a non-answer if I ever heard one.
I've learned the ED is not the place for someone with my type of health problems. I mean, obviously, if I break an ankle or I am positively in a heart attack, I'll go. But for something as nebulous as headaches, very little will be done. Maybe an MRI, but one of that particular sinus? Doubtful. That's why we patients should be able to go to our doctors, NOT the emergency department, with these kinds of complaints, but it seems the buck is being passed by nearly all doctors nowadays, who are sending patients to the ED rather than scheduling an appointment in the office.
And the ED is known to be the most expensive place health care is dispensed, and all kinds of programs exist to keep patients from going to the ED for routine care, so why is it that doctors are bailing on us and sending us to other doctors well versed in emergency medicine but not necessarily in our individual problems, including neurological ones?
Ah, well. I've already complained enough about that.
Sphenoid sinus headaches from inflammation are said to cause pain at the base of the skull and neck and on the top of the head, and those two places, along with pain behind my eyes which would probably be the frontal sinuses--though some sites say the sphenoid sinus also causes pain there--are exactly what plagued me during these recent headaches. The sphenoid sinus is located right between the eyes, but relatively deep in the head.
Of course, my problems in the sphenoid sinus and my other sinuses might, in fact, be simply related to my diagnosis of granulomatosis with polyangiitis (Wegener's granulomatosis), which I was told at this point is limited to my nose and sinuses but which is known to cause problems in other organs, including the brain.
In other words, the possibilities are pretty much myriad, but no one--not a single one of my specialists--seems very curious to find out what is actually going on.
Anyway, in addition to these very sick headaches of late, I have a couple of new clues that could mean the mass in my sphenoid sinus has swollen. The mass doesn't have to be malignant to cause major problems; just by this deep sinus's becoming inflamed, according to the literature, pressure can be put on the brain and cause serious symptoms, leading to severe illness or death.
So, here are the new, and in one case not-so-new, clues:
Dysguesia: This is a disorder of taste and involves sudden changes in a person's sense of taste. Most frequently, foods we loved suddenly become unappetizing. This has been happening to me quite a bit of late. In fact, most foods are turning me off these days.
I first noticed this problem about six months ago when I suddenly couldn't stand the taste of Pepsi. As a lifelong Pepsiholic, this was a major--and sudden--change. For most of my adult live, I've regularly drunk so many Pepsis a day I'm embarrassed. Then one day--Yuck! Pepsi! Couldn't stand it!
I then began drinking ginger ale like a fiend. I couldn't get enough of the stuff, and in the past I've never liked it very much. I started going through close to a liter a day, grateful that even if I was taking in a ton of sugar I wasn't taking in caffeine. This went on for months, fueled by how cheap a generic liter of ginger ale is compared to Pepsi or Coke--we'd regularly find them for 72 cents apiece!
Then, about a week ago, after the headaches started, I could barely tolerate the taste of ginger ale anymore. Boom. Just like that, yuck on ginger ale.
Very weird. Other foods have gone the way of yuck as well, pretty much all of a sudden.
Even smells can be affected. Yesterday afternoon, in the midst of hypersomnia, I could smell ground beef cooking on the stove--Honey was making tacos. I've always liked the smell of ground beef cooking, but this time it smelled atrocious. I did eat the tacos later, but today he made roast beef and mashed potatoes, and for the first time in memory I didn't even like the taste of mashed potatoes, one of my favorite foods.
I sure hope this thing goes away!
Out-of-Control Sneezing and Productive Cough. I've written about my "productive" cough over the past few months--this means that the cough brings up phlegm. I also have been sneezing like a maniac lately. Both of these are symptoms of sphenoid sinusitis, or any sinusitis, that causes infection in the brain, according to Sinus Reference.com. Obviously, a brain infection can be serious.
REM Sleep Behavior Disorder. I've commented extensively on this recently. I'll link to those posts momentarily. This problem, too, came on very suddenly and swiftly just when the headaches were at their worst. (I'm having some relief lately, but the threat of those sick headaches is always there, lurking just below the surface.)
REM Sleep Behavior Disorder is frequently a precursor (or concurrent with) Parkinson's Disease, so I have also spent some time researching that disorder. (N.B. I still think I may have myotonic dystrophy but have not yet gotten the DNA results--but I guess it's possible to have more than one of these things at a time.)
Something happened a year ago this past Christmas that also could suggest Parkinson's, according to "Talking While Walking Puts Parkinson's Patients at Risk for Falls," published by Florida State University.
Lack of Balance/Falling. Just before Christmas 2013, my son J. and I were walking along the sidewalks in Frederick, Maryland, while Christmas shopping, having a happy conversation about the day's activities. Suddenly, out of nowhere, my legs just didn't seem to work anymore. I recognized it as it happened--I just couldn't coordinate them; I felt a massive moment of confusion, and then I pitched forward with the momentum of walking and landed flat on my nose on the sidewalk.
I can still remember seeing that sidewalk rushing up to me, and my arms giving out rather than protecting my face from the fall. (The arms thing, of course, makes me think of muscle weakness, a symptom I also have but which the "wonderful" (NOT) neurologist at Hopkins also told me I wasn't experiencing, even though she didn't really question me about any such symptoms.)
I must have blacked out momentarily because I was later diagnosed with a concussion.I just remember lying on the sidewalk in a massive pool of blood, my nose and face really hurting, and slightly freaking out. J. was right beside me, remaining amazingly calm--I really appreciated that in the kid, who has had his own set of problems his whole live and could have also freaked out badly. But he didn't.
A wonderful meter maid (I'm sure there's a more politically correct title for the job) saw it happen and rushed over to me. Also, two men from the Weinberg Center for the Arts, a wonderful venue, who were just about to close up for the day witnessed the fall and rushed out to me with paper towels and a wheelchair. I left a ginormous blood stain on the sidewalk right in front of the Weinberg. It's probably still there.
The meter maid thought she saw me trip, and while there may have been a slight tripping over something, I don't recall that at all, and my inability to right myself once the confusion set in was far out of proportion to any minor tripping I might have had, if any.
I guess the blood pooled in my face because I ended up with a black eye, as well as a swollen (but thankfully not broken) nose. Although the incident was very scary, I was touched by the human kindness it brought out in those who witnessed it. Once the ambulance came, I was briefly checked out and asked whether I wanted to go to the ED. The bleeding had stopped, and going to a hospital was the last thing I wanted to do. I just wanted to get home (a two-hour drive, ugh) and rest. I did that until I threw up later and went to an ED near home and was diagnosed with the concussion.
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| Me, after the fall. |
The point is, it all happened when I was walking and talking at the same time, something I rarely do as I'm not much of a shopper or walker (unfortunately) anymore--too exhausting.
"Parkinson's disease and multiple sclerosis are two common diseases that can affect the brain resulting in loss of balance," says the Neurology Muscular Dystrophy and Neuropathy Institute. And I have indications of both of those diseases; REM Sleep Behavior Disorder is highly associated with Parkinson's Disease. White matter lesions, which I have in abundance according to Dr. A., often occur in conjunction with Parkinson's Disease but are not necessarily due to it. However, of those white matter lesions, Dr. A told me he'd diagnose me with multiple sclerosis based on my symptoms and those lesions, except I didn't have any lesions in my spinal column, which almost always happens in MS. I was also slightly older than the normal range for diagnosis MS.
Thus, I can't help but worry that this incident of loss of coordination and falling was due to whatever is still happening in my brain and is now bringing on the headaches and REM sleep behavior disorder as well. The problem is, according to the Florida State University article, one of "cognitive loading." Talking while walking is actually a very complicated thing to do, and those whose brains are impaired have trouble managing both simultaneously.
Oh, well, this is all much ado about nothing, I know, until a doctor decrees one or the other (or something else) to be the culprit. But my faith in the medical system is on such low ebb these days that I can't help but doubt I'll be taken seriously or given the right tests.
Now that I have the "neurodegenerative" diagnosis--even though the exact cause hasn't been identified--I worry that all these symptoms will just be considered par for the course, and a more acute cause--such as a sphenoid sinus tumor or inflammation, or even an ectopic pituitary tumor in the sphenoid sinus--will not even be investigated.
Such is the frustration of a patient here where I am, Down the Rabbit Hole of today's health care system.
I'm still trying hard not to get too discouraged and give up entirely, and I do think my health sleuthing is under control--NOT an obsession, just a normal curiosity for someone who has the tools to actually research the medical literature, as well as a burning desire just to KNOW.
I actually made an apple pie tonight, and now I'm going to practice making some tea sandwiches. A friend asked me to cater a service for her husband who died recently. So, you see, I'm not just sitting here obsessing about brain tumors and Parkinson's.
I just wish I could get a doctor to take all of this seriously and actually investigate the causes of all these problems.
But, as my ex-husband used to say all the time, "People in hell want ice water."
And they're not likely to get what they need, either.
It's elementary, dear Watson.
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