Thursday, April 2, 2015


I do have a BISD, and election story - do not fret.  I also have an interview with David Belleperche

The top picture is of my brain. The bottom comes from the NIH. I've known about this for about 29, years. To be frank with you, the neurologist who wanted to do the shunting 29 years ago, was right. But I was stuck in a bind, I had the neurologist who worked with my private doctor telling me not to worry and the VA saying it was too soon to know what it meant. Well we now know what it meant. In my view given the low risks associated with shunting - anyone diagnosed at any age with fluid on the brain should undergo the procedure.

I am not mad - but I feel like I have a duty to educate people and doctors about my journey.  I have two choices, be angry or turn this into an educational moment to help other people.  My long term readers know I will always go with the educational moment.  I cannot change yesterday, but I can make a difference for other people.

I will document the long journey.  I am working on old medical records - so I can show the progression of the disease.  At every turn I was told, "well, the fluid may be the problem, but better to treat with a pill."  No, you treat it with shunting.

The white on my scan is the brain fluid.  You can see how it is not the same as in the NIH picture.  But in the NIH picture they mark the pituitary area.  Brain fluid is not always the reason for empty sella syndrome - it can be a benign tumor.  I have primary empty sella syndrome.  Secondary is often caused by a benign tumor.  The link is really helpful in terms of more color drawings.

The fluid is pushing down on the hypothalamus.  This in turn impacts the pituitary. 

The effects were cog fog - remember how I talked about a new medicine which got rid of the fog.  I have no clock in my head so I take one medicine to control the cog fog and keep me awake, and at night I take 4 pills to get me on average 6 hours sleep.  Without the medication I can go days on end without sleep while living in a cog fog.  Cog is short for cognition.

The hypothalamus also controls metabolism.  It started with unexplained weight gain.  Since it started I have gained 116 pounds.  During this period I was eating healthy, doing three hundred crunches a day, and two hours a day on the treadmill.  On my 50th birthday I met my goal and benched 315 lbs.  You do not bench 315 lbs on your 50th unless you have been a gym rat for years.  I have no metabolism.

The lack of metabolism caused the fatty liver, fatty lungs  [which is why I have shortness of breath upon exertion] fat surrounding my heart, and morbid obesity.

The hypothalamus problem is why I developed gynecomastia .  When I see my pcp on the 16th I will ask for a mammogram.  There is a very well defined lump which is very painful.  The VA will do the surgery to remove the breasts.  It is actually quite simple.  Click for video  You can see they are removing a pouch and not fat.

The hypothalamus  - pituitary axis problem also caused the low testosterone, low vitamin D, and on and on. The brain fluid is now causing me to lose my vision which is why the VA eye doctor was able to get me from his office to a neurosurgeon in 2 weeks with all testing done in between.

This is real and went unattended because medicine has become about billing.  A doctor cannot bill for the  time needed to research medical conditions they do not understand - they just move on and dismiss the patient.

People come to me for the current status of the law because, even though no one is paying me I stay current by reading all US Supreme Court opinions - Dallas and Corpus Christi Court of Appeals decision, and the federal Fifth Circuit Court of Appeals opinions.  Sometimes I do not read all of the criminal cases because they are mandatory appeals which never go anywhere.  I also read the Texas Court of Criminal Appeals - for those of you who do not know Texas has one high court for civil cases and another for criminal cases.

Finally, MOSH from the NIH. "Bariatric surgery results in the complete resolution of male obesity-associated secondary hypogonadism (MOSH) in many patients."

When you combine the surgery for MOSH, shunting and gynecomastia, my health will be restored.  By age 60 I can be back to jogging 5 miles a day, and benching at least 250 or more a day.  Not all of the damage will be reversed, but a lot will be reversed.  Now that I have a neurosurgeon who understands, I am going to fight like hell that the VA does not come up with another excuse. 

1 comment:

Anonymous said...

Good luck on your surgery. This is a great educational post. This case is a good example on how one should be their own advocate, instead of just relying on what their doctor says without being well informed.