Sunday, April 15, 2012

..and it just keeps on coming

These past two weeks have been quite interesting. Many doctors appointments and tests have been done and I feel as though I have been referred to specialist after specialist and gone through multiple tests recently. 

If some of you don't know, POTS is actually a conglomeration of "symptoms" that make up a syndrome. For me, my POTS symptoms are caused by EDS. While I am okay a diagnoses of Postural Orthostatic Tachycardia, I knew that I still had something else going on...something still just wasn't right.

Fatigue, severe exercise intolerance, chest pain, difficulty breathing, just to name a few.

After a chest ct (that I have had multiple times before), sinus ct, and a stress test, I have many more things to now deal with...does it ever end?

My stress test came back abnormal. It shows that my heart is not getting enough oxygen and my waves are abnormal. Why this is happening in someone my age? They are stumped. I see a specialist in cardiology on Thursday. Maybe this has something to do with my bicuspid aortic valve, but I doubt it. My past echos show that congenital heart problem is doing fine. I'm a little nervous about that one, but I'm keeping a positive attitude.

Other firm diagnoses from the stress test that have been thrown around...
airway collapses.exercise induced asthma.vocal cord dysfunction.possible more laryngomalacia that I may need a third surgery. 

Next, I had a sinus CT to see if my anatomy is abnormal. 
Of course it is! I have an 100% blockage in my left nasal cavity from a bone spur.
That on top of my 95% blockage of a deviated septum qualifies me for surgery
(my doctor doesn't recommend surgery if you just have a deviated septum)

Last. My chest CT :/ 
 The doctor literally called and said "well, it isn't horrible news"
After a phone conversation regarding my results, I learned that the main vessel in my body (Vena-Cava) is on the opposite side of my body. Mine if on the left and it's supposed to be on the right.
Then, my artery that feeds the spinal column isn't where it should be.
OKAY? SO? ...the only words that could come out of my mouth...
She didn't have a lot of words for me and this will be addressed with the cardiologist on thursday as well. How is that for news! I just keep asking myself how this was NEVER diagnosed before. I have had quite a few chest CT's -- really?

I just feel that there is a lot of other contributing factors for most of us than just POTS.
Does anyone agree or has anyone had similiar experiences?

I'm too tired for questions, I promise I will answer them next week :)

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