Tuesday, March 17, 2015

I want to be clear about something, the best medical care hands down in the LRGV is at the VA clinic in Harlingen.  The problem doctors at the VA clinic are no different than the problem doctors who work in the private sector.

My primary care physician is not perfect, but under the circumstances she is probably one of the best doctors in the LRGV.  The VA is overwhelmed and they can only do so much.  I have prescriptions other veterans cannot get because my doctor will work late into the night documenting the justification for the non-formulary medicines - something as simple a Zetia for cholesterol is nearly impossible to get.  I get it.  I get Lyrica for neuropathy - again a near impossible medicine to get unless you have a top notch doctor willing to do the paperwork to justify the non-formulary medicine.

A lot of veterans do not know the rule because their doctors lie to them - the VA will provide any FDA approved medicine - it is just a matter of your doctor willing to do the paperwork to justify a non-formulary prescription.  I get Zetia because, Dr. Scott Grundy, one of the best known lipid specialists in the world, documented it is the only cholesterol lowering drug I can tolerate.  My doctor took all of Dr. Grundy's notes and justified my Zetia prescription.  My doctor is A+.

I have been right enough times based on my own research that my doctor routinely writes the necessary referrals to get me help.  When I see an outside specialist who fails, it is the specialist's fault not my primary physician's fault.

Some doctors just get it and others do not.


My view on life is - embrace it - learn from your experiences - live it - enjoy.  And I do - I am myself with no apologies. I am loyal to a fault to my values.  Many doctors have asked how I have spent 38 years with a headache and muscle pain from the myofascitis .  It's simple - it is what it is.  For me it is like my arm - it is part of me and I embrace it.  Further, based on years of research I developed my own physical therapy which now relieves about 75% of the pain.

I have fluid building up around my brain along with atrophy of the brain tissue.- I have known this since 1985/86, during a week long stay in the hospital based on what was eventually termed a TIA, mini-stroke.  My right arm never fully recovered.  The last MRI showed that it had worsen significantly.

Yesterday I was referred for an emergency appointment with a neurologist.  The eye doctor verified through testing I am losing my vision in both eyes due to pressure on the optic nerve caused by the brain fluid.  Without certain specific testing it cannot be verified if it is just a malfunction of the ventricles which are the drain for the cerebral fluid or a benign tumor causing the problem with the pituitary [I have empty sella syndrome].  But a malfunction of the ventricles or a benign tumor can cause the cerebral fluid to cause for the appearance of an empty sella. 

This is how we eventually found the secondary hypogonadism.  90% of the research and pushing for testing coming from me.  [To be fair, my neurologist/pain management doctor suspected primary hypogonadism based on what was clearly hot flashes, so he ordered the upper spinal MRI under the guise of elbow pain and the finding of empty sella syndrome started me on the path to recovery. Then when my testosterone dropped to 34/35 while on Androgel I provided my doctor with the research for advanced testing. This is when we discovered the axis problem between the hypothalamus and the pituitary.  The diagnosis was changed to secondary hypogonadism.

The VA in Houston is a leader in a special form of bariatric surgery with a 93% success rate when dealing with MOSH.  I also have gynecomastia from this mess, which in the end may all be tied to the cerebral fluid build up which has been verified many, many times through MRI, but dismissed.

Every time it is the same - well you have no life changing symptoms to justify the exploratory surgery, or the relieving of the brain fluid is not justified under the circumstances.

If the brain fluid buildup is the cause the empty sella then my fatty liver, fat build up in and around the lungs and heart, no testosterone or vitamin D, loss of vision, and pressure on the optic never can all be attributed to the fluid build up.  I think this is more than enough evidence it is time to place the shunts in the ventricles.  But if the neurologist says no, then I will appeal to Washington and ask that I be sent to the VA Houston wherein they now have specialist addressing all of these issues.


I can only hope this neurologist who dismissed the last MRI indicating fluid build up will be more concerned now that the eye doctor has verified through testing the cerebral fluid is putting excessive pressure on the optic nerve.  We shall see.

I have taught myself anatomy and physiology.  I have read endless professional journals on neurology, neurobiology, and brain disorders. [I bring a lot of this to my understanding of special needs children].

I will stay on this until the VA gets it right.  If the endocrinologist will not recommend the surgery for MOSH and gynecomastia I will fight all the way to Washington.  It is the VA Houston taking the lead on these new surgeries for men in my situation.  My primary cannot recommend it without the approval of the specialist.   Once she has the approval within days she will have the ball rolling.


Yes it is true, a handful of doctors have been there for me and provided me just enough to do the extra research to get the care I need

My doctors accept the fact I am ahead of the curve in terms of understanding the problem with the axis between the hypothalamus and pituitary. 

For example, MOSH, is basically new.  My endocrinologist has never heard of it.  I do not fault him - it is new.  Male obesity associated secondary hypogonadism.  He promised me by the time I see him next month he will have read all of the research coming out of the VA Houston.


My primary sent me to the ENT doctor because of chronic sinus infections.  The allergist has verified through testing it is structural and not caused by allergens. I am not so certain about this.  I have been told several times I cannot be tested for allergies.  Both sets of tests he did on my back and shoulder failed to show me allergic to anything.  But the CT scan did show polyps in the lower sinuses and cysts in the upper sinuses and a clear break in the septum - it looks like someone just cut right through it.  So I am scheduled for surgery on April 20, 2015.

But the CT scan also showed a problem with my left eye.  A visiting surgeon saw me immediately - he has the GOD complex.  He said he did not need to look at the CT scan because as god without so much as a vision check he knew the report was wrong.

Well by chance I had my 6 month follow-up for the cataract surgery.  The regular VA doctor looked at the CT scan -saw the empty sella, saw I had secondary hypogonadism and then had the tech measure the pressure on the optic nerves.  It showed to have doubled since May the last time they checked.  He then checked my vision and verified the loss of vision since the surgery.

He then spend about 30 minutes typing up the emergency referral to the neurologist. 


When  I see this neurologist I will have in had the latest from the National Institute of Health which mandates going in and placing shunts in the ventricles for the drainage - which should relieve the pressure on the pituitary gland, and optic nerve.  The current protocol also calls for a special procedure to enter into the brain cavity in the affected area to visually verify there is no benign tumor causing the fluid build up.  If she does not do her job, the VA will then find a neurologist outside the LRGV who knows about these things.

I do not blame the doctors for what they do not know, I blame them for when they are unwilling to check current research and protocols before dismissing the patient..

No comments: