Beautifully Afflicted ~ The Invisibile Disability Story ~ Part 1

August 2003

That is when the headaches started.  The family Dr I was seeing at that time ordered a CT Scan, STAT.  The Scan was normal...  He gave me Vicodin, and Migraine medication... Chalked it up to stress, and Migraines. (I had never had a migraine before) I took some pain pills for the pain, but nothing made it better.  I just kept taking the pills, giving it time.  A month later, my eyes were killing me, no pain pill or migraine medication would make the eye pain go away... So I made an appointment With an Opthamologist (not an Optometrist) an actual EYE DR. Dr. Scott Cory (my personal hero) I told him about what had been going on with the headaches for a couple months now, and now the EYE pain that won't go away, accompanied with Swooshing in my right ear...Horrible, annoying swooshing, that NEVER stops.  He looked deep inside my eyes with all his elaborate machines and said, "You need to get a Spinal Tap!" He new right away, because my nerves were swollen that I had a condition called Pseudotumor Cerebri. Pseudo meaning "false" tumor-Cerebri meaning "brain"=False tumor in the brain... a.k.a. Intracrnial Hypertension & Hydrocephalus. OK... what does that mean? Your brain is reacting as if you have a brain tumor, there is sooo much Spinal fluid accumulating inside your skull that you brain thinks you have a tumor. Pain, Headaches, Migraines, Eye pain, Vision Loss, all these things came together, and made sense for the first time. (Your skull is a closed cavity, so when the fluid builds up there is no where for it to go.)

September 2003

I was diagnosed with Pseudotumor Cerebri...  So I make an appointment with a neurologist (who will remain nameless) and tell him my history, and what Dr Cory thinks.  We set up a spinal tap, I was scared to death of a needle going into my spine! But I was in sooooo much pain I was willing to do anything. So in September of 2003, I had my first spinal tap. INSTANTLY the swooshing in my right ear stops, as he's draining fluid the fluid into test tubes.  It was a  long time ago for me so I don't remember what my opening pressure was. I think it was 40 something, and normal is 12... So after a few days, after my brain recovered from all that intracranial pressure, the headaches were gone, the eye pain had dissipated.  A week goes by, and it all comes right back. The Dr tried treating it with Diamox, a water pill,  blood pressure medication, Topamax(which we called DOPEAMAX!) And about 4-5 other pills that I cannot even remember.  Needless to say, those things were not working.  I went back to the eye Dr for a follow up, told him how as soon as he started draining the fluid the swooshing in my ear stopped! And continues to tell him of all the med's he has put me on to control the "overabundance of fluid" but none of them were working, and now I'm BEGGING for another spinal tap because that was the only thing that made me feel better...

Dr Cory recommended that I see a Neurologist in Merrillville named Dr.Todd Janus, MD. I switched to him, I REALLY liked him, and he was familiar with my condition.  The first neurologist I saw, didn't know a thing about my condition... Anyway, LOVED Dr Janus.  After several trial & errors with medications, many spinal taps, CT scans, MRI's, MRA's, MRV's, tons of blood work, we still couldn't figure out how to CONTROL the amount of fluid my body was producing, or the fact that my ventricles were not absorbing the fluid and distributing it properly. A year has gone by since I was diagnosed, I had about 30 spinal taps during this time, as that was the only way to drain the excess fluid, and I was "let go" from my job... (he [a christian] could do that since there were only like 7 employees... I looked into it!) 

Dr Janus referred me to a Neurosurgeon to get a Lumbar Peritoneal Shunt implanted to drain the fluid from my head and drain it to my peritoneal cavity to be reabsorbed by my bloodstream.  Scary, but after meeting with Dr. Mitchell Gropper, MD @ Munster Community, Jeff and I agreed to do it.

November 2004,  I underwent surgery for a Lumbar-Peritoneal Shunt. A tube was placed in my spine (low back) around my right side and the actual shunt was placed in my abdomen (lower right quadrant) the surgery was a success. Very painful to have a tube placed into the spine, and tubing placed throughout my side, and the incision for the shunt placement was about 4 inches. Well my brain was under pressure for so long that after the surgery I was sooooo sick, almost like LOW PRESSURE headaches now... I was a mess, the Dr took me back to surgery the next day opened the shunt up and put in a different valve, one that didn't drain so much.  That was better. I went home the next day. All was better now, seemed that my eye's were back to normal, headaches were under control, the SWOOSHING was GONE!!! that was huge right there... That damn swooshing will drive someone nuts! A month later symptoms are coming back. 

December 2004, Dr Gropper opened up, just my abdomen (the shunt) and put in a wide open valve to drain the fluid. Come to find out that was the first valve that he originally put in... It was just too much too fast... My brain had been under pressure for over a year, that when he put in that wide open valve, it was just too much for me to handle! THEN... Right before Christmas, Dr. Mitchell Gropper DIED of a massive heart attack! He was only in his 40's.  His wife (his nurse) was 8 months pregnant. My Neurologist and him were really good friends. After spending alot of time figuring this out...It was sad to see the DR who finally was able to help me, die...

My luck had started to change, the shunt was working, and I was feeling better.  I had tried to apply for Disability, but was denied, twice.  Even after seeing the Dr's that Social Security wanted me to see, I was still denied.  There are not very many doctors that know about Pseudotumor Cerebri, Unfortunately...