Neurological/metabollic???? Please help

Question

62 yr old dad,lost vision in both eyes two days ago.  Can see halo, but not object, he's confused, hot/cold, Dr.s still don't know what is going on.  He was diagnosed over the summer with an unknown virus that attacked his brain. He was treated with steroids, antiseizure and antivirals.  He had brain swelling, tremors,  confusion,focal seizure activity, impaired motor function, he had two lengthy hospital stays, he's been in rehab since Aug., but not making much progress.  There are days he has tremors and muscle weakness so sever that he is sent home from rehab because he can't do the work.  We need help.  There is something we are all missing.  He's been tested for everything from madcow to West Nile, Herpes to Aides, anything that would attack the brain.  He had a kidney removed last October because of a large Renal Cell Carcinoma.  It was contained and no chemo/radiation was needed.  Could this be something from that?  Help, please help.  My dad is young and he is so sick.

ggreg · Answer

On the MRI issue and your father being too agitated to have another one, the scan people are supposed to tranquilize people who are nervous about doing that test.  Even if he's not afraid of the machine itself, his agitation warrants a tranquilizer.  They need to zone him out enough to where he can have an MRI of his brain.  But it could be they are concerned about tranquilizing him on account of his various neuro issues, I don't know, so I would ask to speak to the absolute top person over the MRI department about this whole thing.  

On the issue of not being able to transfer your father, ask both hospitals if you check him out of the hospital he's in, can you then take him to the other hospital, and ALSO get in touch with his insurance people and ask them the same question, mainly to make sure his coverage will go with him when he changes hospitals via whatever form or fashion, be it transfer, checkout, etc.

And I think it is possible if you can find a neurosurgeon outside the hospital to come in as your "consult," that he can perhaps help you out with all this stuff, but you'll need to talk to the administrative people over the department as to what the rules are on that.  But whether a consult neuro doc is allowed come in or not, I think it's time to talk to somebody on the outside about this whole thing, which the other hospital at UT might be able to advise you on this idea.

Christiebooden · Answer

Unbelievable... the doctors are refusing to transfer saying that unless it's for higher care, it's considered a family request. I think it's basic care needed, not higher care. Very frustrated and feel like we are pressed against a wall.

Christiebooden · Answer

Thank you for encouraging us to push... we (the family) know something is STILL going on and there are NEW developments, we just can't get the neurology team to see him as important because they don't know.  It has to be something very rare, or not obvious.  We are transferring him to UT Southwestern in Dallas.  A new set of eyes, teaching hospital, top Texas Hospital... maybe there, he can get some help.

Christiebooden · Answer

My mom is in the process of transferring him to UT Southwestern in Dallas.  They have a much more advanced Neurology department.  They have ordered subsequent MRI's on the optic nerve/area, but my dad is so agitated and can't stay still he's been sent back from the MRI department twice.  They just order another scan and my dad sits for another day while he digresses further and further.  My mom has had it and is demanding him transferred.  There is something going on, everyone at Harris is stumped.

ggreg · Answer

I feel for you and your Dad.  The symptom that got my attention was how he is now having body temperature problems, where you said "hot/cold," and this, accompanied by his loss of vision, suggests to me that something in his brain is compromising the optic nerve and the hypothalmus.  The hypothalmus is located right next to where the optic nerve is, and in fact there are three glands right together in the middle of the brain, the thalmus, hypothalmus, and pituitary gland, as well as where the optic nerve area is.  When the hypothalmus or, really, any of those glands malfunctions, it can goof up the normal body temperature of a person, among other symptoms.

Now, whether this is from his brain still swelling, or from perhaps a benign or cancerous tumor growing in the vicinity I just described, or a bleed in the brain at that location, I do not know.  But imaging studies should show just what exactly is going on in that part of his brain, and so a scan should be done forthwith.  Whatever is compromising that area has to be addressed, because whatever pressure is affecting that part of the brain where the optic nerves and hormonal glands are has taken his eyesight and is affecting the hormones that emminate from the brain to make him feel hot and cold.

Let us know what happens.  Do push for a new scan...in fact, demand it.  If one has not been done since he lost his vision, he must have another done right away.  And I do think this is a new development going on in his brain or at least a worsening of his brain swelling, because after everything he's been thru over a long period of time, to suddenly lose his sight and to have the symptom of being hot and cold, this suggests the middle part of his brain is being compromised by SOMEthing new or at least a worsening of an existing issue, and most of the time there are ways to correct this vision and temperature problem, and thus hopefully help not only his current health issues, but could be the new scan will reveal more of why in general he's experiencing a lingering of his original symptoms... altho could be those are permanent.