Dr. House gave me his diagnosis yesterday. It has now been determined that the thyroid nodules are non-cancerous cysts, breast lump is benign, and there is a "low chance" that a paraneoplastic syndrome is shriveling my brain into a raisin. I still have a spleen, two kidneys, and a liver. None of my bodily fluid or tissue has been shipped off in Fed Ex boxes to the Mayo Clinic (at least, for the past thirty days and counting).
All good news.
Dr. House thinks the exhaustion (the EXHAUSTION!), cognitive problems, and visual changes are due to Chronic Fatigue Syndrome.
Chronic fatigue syndrome, or CFS, is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Persons with CFS most often function at a substantially lower level of activity than they were capable of before the onset of illness. In addition to these key defining characteristics, patients report various nonspecific symptoms, including weakness, muscle pain, impaired memory and/or mental concentration, insomnia, and post-exertional fatigue lasting more than 24 hours. In some cases, CFS can persist for years. The cause or causes of CFS have not been identified and no specific diagnostic tests are available. Moreover, since many illnesses have incapacitating fatigue as a symptom, care must be taken to exclude other known and often treatable conditions before a diagnosis of CFS is made. (CDC website)
All good news.
Dr. House thinks the exhaustion (the EXHAUSTION!), cognitive problems, and visual changes are due to Chronic Fatigue Syndrome.
Chronic fatigue syndrome, or CFS, is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Persons with CFS most often function at a substantially lower level of activity than they were capable of before the onset of illness. In addition to these key defining characteristics, patients report various nonspecific symptoms, including weakness, muscle pain, impaired memory and/or mental concentration, insomnia, and post-exertional fatigue lasting more than 24 hours. In some cases, CFS can persist for years. The cause or causes of CFS have not been identified and no specific diagnostic tests are available. Moreover, since many illnesses have incapacitating fatigue as a symptom, care must be taken to exclude other known and often treatable conditions before a diagnosis of CFS is made. (CDC website)
Read more here: http://www.cdc.gov/cfs/cfsbasicfacts.htm
I am still processing this opinion and have not wrapped my mind around it yet. As the recipient of many opinions from many experts, I am not sure if I am sold on this one.
The brain tumor is a independent issue, it has nothing to do with CFS. Neurosurgical consensus on brain remains the same. That is, location makes surgery too risky, but that is ok because the tumor appears to be slow-growing. If and when the tumor is five times larger (by my calculations, that is @ ten years), then surgery would be required. Or, if there is some earlier issue, such as hemorrhage or growth that blocks cerebral spinal fluid, then emergency surgery.
There are no medical guarantees ... but the longer I wait, the more advances there are in surgical techniques. Ten years ago, an intraventricular brain tumor could not be accessed surgically. Now, a handful of centers are doing endoscopic surgery to get there. Maybe, in ten more years, I could just take a pill and get rid of this thing? One can hope.
Columbia & Cornell University layperson article on intraventricular brain tumor:
The brain tumor is a independent issue, it has nothing to do with CFS. Neurosurgical consensus on brain remains the same. That is, location makes surgery too risky, but that is ok because the tumor appears to be slow-growing. If and when the tumor is five times larger (by my calculations, that is @ ten years), then surgery would be required. Or, if there is some earlier issue, such as hemorrhage or growth that blocks cerebral spinal fluid, then emergency surgery.
There are no medical guarantees ... but the longer I wait, the more advances there are in surgical techniques. Ten years ago, an intraventricular brain tumor could not be accessed surgically. Now, a handful of centers are doing endoscopic surgery to get there. Maybe, in ten more years, I could just take a pill and get rid of this thing? One can hope.
Columbia & Cornell University layperson article on intraventricular brain tumor:
Columbia & Cornell University layperson article on endoscopic intraventricular surgery:
For those short on time, here is my favorite part of the article: Using an endoscope to remove intraventricular brain tumors (tumors within the brain's ventricles or cavities) is seen as one of the most challenging aspects of neurosurgery because the ventricles are located near the center of the brain. And, in patients without hydrocephalus (swelling of the brain) the challenge is actually much greater because patients lack the enlarged ventricles that allow surgeons wider pathways to the tumor site and more room to operate once there.
Because I imagine all those NON-challenging aspects of neurosurgery must get so boring. And I don't have hydrocephalus. It comes as no surprise to me that my brain is tough to crack. I am sure my husband would agree wholeheartedly.
The treatment for me remains unchanged. Serial MRI every six months, for the rest of my life, to keep track of tumor growth. I've gone around and around (and then up and down) with the What Ifs on this matter and just need to not obsess, and deal. I am almost there. Thank you, Blue Cross, for your excellent mental health care coverage.
As for being sick, they, meaning the Brain Gods (apologies to any Brain Goddesses out there, I have yet to meet with any of you, though I know you exist), are all in agreement. My f----ed up brain is f----ed up indeed, but it is not what is now making me sick.
So if CFS is, then things could be done to treat those symptoms. That would an improvement, right?
2 comments:
I know I'm still new here so I'm not sure exactly what you've tried and haven't yet, but years ago I got pretty sick and when I went to my Dr. to tell them that I had gained 25 pounds, was exhausted, my eyes were breaking out and my tongue was swollen so that it didn't fit in my mouth properly anymore, they said that I was "fine". I fought them and said that I wasn't "fine" - hello I felt like my black lab with her tongue hanging out.
I eventually went to a Chinese Doctor to investigate acupuncture. Turns out it was a problem with digestion for me. My food wasn't being digested properly and therefore my body wasn't getting the nutrients it really needed to function.
I started getting acupuncture treatments four years ago and within 5 months of starting I felt better. Ever since then, I have turned to acupuncture whenever Western Medicine doesn't give me a concrete answer. In fact, I've even used Eastern Medicine in conjunction with Western now for healing, etc.
This year I talked my son into trying it for allergies and I'm proud to report that after a month of treatments - we have successfully cleared - milk, citrus and wheat allergies and my son's snot factory has been reduced to a sniffle. No Benadryl for a month when he took it just about every day prior.
If you haven't already checked into acupuncture for your immune system, it might be worth a look. If you have already done that ... then good for you :-D
I don't know about the acupuncture method (though I am DESPERATE for some relief for myself and am headed to the push-pin house as a matter of fact next week) but I DO know that there are some things for CFS (again, one of the many co-morbid lovelies lingering in my sister's body) that can make you feel a little bit more energetic. She personally thinks that CFS is another one of those trash-can deposit diagnoses--"Well, you're tired all the time and we don't know why, so basically you are fatigued, and it's chronic, and we'll call it a syndrome and have some fundraisers." Of course with all the other things she has, she is a bit jaded, I'll admit, but the biggest things she does is try to eat right, take care of herself, and realize she's not superwoman and allow herself the opportunities her body needs to rest and revitalize, if only for a bit. On the good side, SO glad that all other things checked out seemed non-concerning....the question is, "Are you having fun yet?"
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