Monday, September 3, 2007

About My Medical Problems


Over the years, I have suffered from a neurological problem. A problem that only a few people in my daily life actually know about. It is to the point, where occasionally, someone will ask what the spots on my arm are. When I was in Chicago and able to get treatment with the socialized medicine at Cook County Hospital (the County owned hospital in Chicago), I was able to get them cut off. The problem, I wanted them all removed at once. They wanted to remove them one at a time, to minimize the pain. So in the end, I only had one removed before I left Chicago to move back to Kansas.

It was in Chicago, that I learned that I had two of these spots (tumors) setting on my brain. It was recommended that nothing be done about these spots, unless they start to get bigger or cause problems. Close monitoring by MRI was recommended. It has been more then 10-years since I have had an MRI (due to costs). What is this problem? It is called Neurofibromatosis (NF).

What is NF


Neurofibromatosis(NF) is an illness of the nervous system. It causes benign tumors to grow in our body all our lives. There is currently no known cure for NF.

There are two distinct types of NF. Neurofibromatosis Type 1(NF1) and Neurofibromatosis Type 2 (NF2).

NF1 (affecting 1 in 3,000) is the result of a mutated gene on chromosome 17. It causes benign tumors to grow on peripheral nerves, under and on the skin and growth of Cafe-Au-lait spots that can be disfiguring. Some people with NF1 also develop optic gliomas, skull base tumors, and tumors that grow deeper in the body. Children with NF1 are known to have developmental abnormalities such as learning disability and gross motor delay.

NF2 is a rare form of NF (affecting 1 in 25,000). It is the result of a gene mutation on chromosome 22, causing tumors to grow in the brain and spine. The hallmark of NF2 is the acoustic neuroma which grows on both acoustic(hearing) nerves to the brain. It causes bilateral deafness and inbalance prior to its removal. Multiple tumors along the spinal cord is inevitable. People with NF2 also develop tumors in or on the skin and CAL spots though lesser than people with NF1.

A newly discovered type of NF is Schwannomatosis (affecting 1 in 40,000). People with Schwannomatosis develop multiple schwannomas on cranial, spinal and peripheral nerves–but they do not develop vestibular tumors and do not go deaf. Affected individuals usually have much greater problems with pain than with neurological disability, although as with all forms of NF, Schwannomatosis may vary greatly between patients. They also do not develop any other kinds of tumors (for example, meningiomas, ependymomas or astrocytomas) and do not have learning disabilities. For reasons not yet understood, people with Schwannomatosis have problems with chronic pain that often exceeds their neurological problems.

NF is a very rare and unknown illness. NF2 alone affects one in every 40,000 births in the United States. Even so, it dread the lives of people suffering from it. Diagnosis may be a long way because not all doctors are experienced enough especially in developing and under-developed countries. The first synthoms of NF usually appears during teenage- a time when one is most vulnerable. Early detection is essential in minimising the effects of NF.

More lives can be eased If the public is educated about NF.

For more info: The Children's Tumor Foundation and Neurofibromatosis.

I know I have NF1. Due to the fact that I have not been able to afford new MRI's (or newer PET scans) and the fact that the MRI scan can't go below my neck, due to the stainless steel Harrington rod in my back (and not talking to a specialist since this the new variaty was discovered), I do not know if I have Schwannomatosis or just NF1.

One famous person, that I know of that has Neurofibromatosis is Gillian Anderson (The X files).

NF is more prevalent than Cystic Fibrosis, Duchenne Muscular Dystrophy and Huntington’s Disease combined. Yet, is lesser known by the public.






These days, no travel package is complete without travel insurance and one has variety of options to choose a cheap insurance service. Taking a loan to finance your trip however has become rare. Most people prefer their citi card and advanta card to make the payments while on the go and pay the bills later on. They don't have to look up for a financial company with a good debt rating for financial concerns.

11 comments:

  1. I'm very sorry to hear this. I know how difficult it can be to deal with skin issues do to a severe case of adult rosacea that I've experienced most of my life.

    My heart and prayers go out to you.

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  2. o you not have health benefits through your employer? I would think that this illness would be a top priority when figuring your finances. If it were me, I would find a way, free clinic, find a nearby study looking for candidates for this disease, or something.

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  3. thanks JW & Cheryl.

    Cheryl -
    yes, I have health insurance at work, but costs money, I don't have for the deductible and co-pay, just to get to the point where the insurance pays 100%. Thats a couple of grand that my puny income cannot afford each year.

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  4. FYI-My daughter also has harrington rods in her back. There is a new MRI that can be used for people who have the rods. My daughter has had a couple of MRI'S done.

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  5. Anonymous -
    Thanks for the comment...I believe those type of MRI's are called P.E.T.

    From what they were descriped to me a few years ago when I started hearing about the PET's is that they are very much like MRI's without the magnets that an MRI has.

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  6. I just wanted to add that Gillian doesn't have neurofibromatosis, her brother does. But she has done a lot of work for NF, even speaking to Congress about how there needs to be more education on and research of NF.
    http://gilliananderson.ws/charities/nf.shtml

    I have a Google alert for Gillian Anderson, which is how I was directed to your blog.

    She's done well because it's something I would not have know about had she not be involved in the charities, etc.

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  7. I'm sorry to hear that you have this condition. But after reading some of your other posts concerning both debt reduction and your dreams of owning a chain of stores, I'm wondering if you need get do a reality check and re-evaluate your priorities. Shouldn't your health be your #1 priority? After all, you won't be able to pay down your debts, or achieve your dream of being a retail mogul, or frankly, be all that useful to anyone else if you let your health deteriorate. I believe even working part-time at Starbucks would give you health insurance and some additional income to cover deductibles. Wouldn't that (or some other similar option) be worth it? It could save your life.

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  8. I agree with Nine Circles. I think your company's insurance plan should be a priority even before your debt repayment, because all it takes is heaven forbid--a broken ankle or appendicitis (had a coworker have both within 3 weeks of each other). Also, if your situation involves anything in your head, it really should be checked. I had no insurance for years and it cost me a bundle in bills with the Dr & hospital and I incurred credit card debt as well. I have it paid off now, but it was debt I wouldn't have had with insurance. Easier to pay copays than $5K bills.

    I wish you the best!

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  9. I only know about this disease because my best friends wife has it. A coworker has it, too, and hers is really disfiguring. I wish you the best, Kev.

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  10. Thanks for the comments.

    Thankfully, I don't have it as bad as other people. certainly the bumps on my arms, chest and legs aren't nearly as bad as the person in the picture.

    I do remember in school (grade and High school) classmates asking about them, at that time the only one visible was the one on my right arm (the one that was cut off). Anyway, it was right on my bicep, so when they asked what it was, I would make a muscle and claim it was a double muscle.
    They never believed me, but that was the story I always told. In fact one time in high school, I was on the buss and someone asked me. I gave him my line and he said no it's note. He then proceeded to to hit my arm (one smack) with his brush right across the bump and bicep. The brush instantly broke into two (I wasn't even flexing). At which point I said I told you it was a double muscle. Franticly, he started saying that it was his girlfriends brush.
    I just shrugged and was like, don't know what to tell you.

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  11. Hey Kevin!

    Thanks for another great article. We've included it in our Fourteenth Edition of the Total Mind and Body Fitness Carnival.

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