Wednesday, April 14, 2010

Why you Should NOT tell a Hypochondriac that she has a Brain Tumor

(I didn't tell many people about this at all (mom and husband) because I didn't want to deal with it if it were nothing, but I think that I can put it out there now).
It started out with several sinus infections and a few too many ear infections (for a 28 year old).
My doctor sent me off to the ENT.
The ENT sent me off for a CT scan and to an Audiologist. 
The CT scan showed that I have something wrong.  I can't use big, bad ENT language but it has something to do with a sack in my sinuses.  Either mine is as big as a quarter and it should be as big as a pin head or vice versa.  Surgery was recommended, but I put it off.  I have to work, holmes. 
The Audiologist found that I have perfect hearing, but that I have Vertigo.
Vertigo? Are you sure?
Sure, sometimes I feel unbalanced and have a loss of coordination, but it feels like I'm hanging ten on a wave-- not like the room is spinning. 
The audiologist recommended that I have an ENG test.  According to Wikipedia, an Electronystagmography (ENG) is a diagnostic test to record involuntary movements of the eye caused by a condition known as nystagmus. It can also be used to diagnose the cause of vertigo, dizziness or balance dysfunction by testing the vestibular system.
The test was weird.  I had to do fun tricks with my eyes closed (like stand on one leg) and look at a computer to complete some tests.  During one portion of the test, I had to follow a running dot around the room.  I also had a lay back while they shot hot and cold air in my ear to cause dizziness.  Fun times, no?
Apparently, I have Nystagmus, which is a form of involuntary eye movement.  Who knew? My eyes are not jumpy and they do not visibly shake.  However, I do have blurred vision on occasion which is not the result of an poor vision.  Perhaps it has something to do with Nystagmus-- that's a question that i'm going to have to ask the audiologist. 
The following week, I ventured back to the ENT to wrap things up.  He briefly went over the results and quickly ordered an MRI.  An MRI- I just came here because of my sinus infections!?!? Why, I asked.  Because you may have a brain tumor, he said.  Umm really, I said.  Probably not, but maybe was his response. 
Great, way to tell a hypochondriac that she may have a brain tumor.
This happened on a Monday-- the next available MRI was on Friday.  So last week, I lived through the anxiety.
On the day of the MRI I was freakin'.   After some googling, I learned that Nystagmus is often caused by brain tumors and Multiple Sclerosis.  My grandmother had MS and spent 25 years of her life in a wheel chair before she died.  It is one of my greatest fears. 
The MRI place that I went to did not have soothing music and it most certainly did not have eye masks.  The actual MRI wasn't that bad, but it was loud.  I was forced to stay in one position and I imagined that I was on my honeymoon, which is my happy place.  About halfway through I decided to open my eyes, just to check things out.  That was a mistake.  The top of the tube was literally 5 inches from my face.  Shit, it was time to imagine that I was in a tanning bed.  After awhile, that worked too. 
About 3/4 of the way through I had to have MRI contrast dye inserted via IV into my arm.  That's when things got shaky.  Immediately after she injected me, I started sneezing (not an easy task when your head is strapped down).  While I was back in the tube, I started to feel a lump in my throat and insane pressure in my sinuses.  I made it through the remainder of the MRI, but I was feeling really weird. 
When they removed me, my arms were numb, I was covered in hives and I was wheezing.  I asked the tech, is this normal?  Her response, "No."  Can I please find a doctor or nurse that is not so damn blunt?  Apparently, only about once a year do they encounter someone that is allergic to MRI contrast dye.  Guess who's the winner for 2010?  That's plastered all over my file now. 
I had to spend about half an hour being monitored, due to my allergic reaction.  Thankfully, it went away on its own and I didn't require any medical intervention. 
Before I left I asked about results.  The tech wouldn't tell me a thing (boo) so I harassed a smart looking man in the hallway.  He said that if they found anything serious, someone would call me very soon. 
After I went home, the husband and I studied the MRI films and didn't see anything too alarming (you know I googled, "MRI images of brain tumors" and compared.
I'm no doctor, but it made me feel a tiny bit better.
On Monday, I called my doctor and asked for the results.  The secretary said that they had not received the report.  I finally called back today and she told me that if he saw anything alarming, he would call me (sidenote: I find this SERIOUSLY ANNOYING.  If you are going to tell me I may have a tumor, at least tell me when I don't).  If not, we would discuss the results at our appointment next month.  
Here's hoping that I'm in the clear!   Cross your fingers for me!


Alissa said...

Oh my goodness, what an ordeal! Sorry you're having to go through all this. I'm sending good vibes and prayers your way!

Anonymous said...

Jerks! I hope everything works out for you.

Anonymous said...

I'm amazed by how dumb and unprofessional some doctors are. I hope everything turns out ok.

Sara @ Russet Street Reno said...

Yikes, that is scary stuff! I'm sure it's a minor issue. And then think of all the 'it's not a brain toomah!' jokes you can make after this! Think positive. And don't go back to that office, they sound like real winners!

Melissa said...

I hope everything is OK! How scary!

Susan said...

My fingers are certainly crossed! It is likely nothing major and they are just making certain, but it sure is frightening to be on the "waiting for results" side!

I feel for you with the uncertainty. I went through a similar situation about a year ago. I had some hearing issues and was referred to an ENT. They thought I had a neuroma (slow growing brain tumor) and sent me to get an MRI.

A WEEK (!) later they left me a message that said they saw something on the MRI and needed me to go in and get another one. Eventually got in touch with the doc who said it wasn't a neuroma (yea -- no brain tumor) but there was a "shadow" on my MRI. No idea what that meant.

Another MRI, and then another and then a visit to the neurologist. He showed me the MRI and said "So, what do you think it is?" He wasn't sure what it was, maybe nothing maybe MS. Come back in 3 months and we'll check again.

With stories like that and like yours, I truly wonder if the medical community forgets that they are actually dealing with real people.

Good luck!!!

~Mrs. Guru~ said...

Sorry about your entire experience. Hope everything comes out good. Praying for you.

Jaime said...

holy crap. that is total craziness. knowing i for you getting through it all. hope everything turns out.

Just Add Walter said...

wow that is amazing at how unprofessional they are being towards you. I am thinking about you and hoping for the best... please please please keep us updated as you find out anything... we are going to be worrying now too!! xoxo

Anonymous said...

My gosh! That is crazy! Hope all is well with you!

Pretty Personal Gifts said...

Wow, that's just wrong. I'm so sorry you're being treated this way by people who should be far more professional.
I hope all is ok. Keep us posted.

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