March 2016
Let's talk about Houston.
Why did we go there?
Well if you don't already know, it is a medical mecca. There are seriously brilliant minds there. And we have amazingly kind family who live there who offered to help us to get in to see some of the top doctors in the area of neurology and neurosurgery there so we hopped on a plane and went.
Before going we had literally been told by doctors in Colorado...
"No further follow up was needed on the cyst in my brain, but we don't know what is going on and why you are having all the symptoms you are having, see yet another specialist."
"The migraines that have been going on for 30+ days...would go away on their own,"
"There was nothing that they could find that was wrong but something was certainly wrong with me, they just didn't know what and I was in the hands of specialists to try trial and error with drugs to see what would work."
When we went to Houston with the help of my Dad's cousin and his wonderful wife we were treated with such amazing kindness. Every doctor that we saw there gave us so much valuable information. They had a wealth of knowledge and each one pealed back another layer of my complex case. We came home with so many new ideas and things to try.
But then trying to transfer that knowledge back to our doctors here has proven to be a ridiculous challenge. I am incredibly grateful for the medical community and thankful for how hardworking and professional the individuals are within that community. But like education there are aspects about the system which bog it down and slow down the rate at which a person is able to receive the care they need. I am not going to continue to rant about this but it has been terribly frustrating during this process.
So we came back to Colorado and tried all of those wonderful things they told us to try and there we were 4 weeks later and...the echo results are in.
Turns out I have a PFO patent foramen ovale--or a hole in my heart. Read below for more info.
http://www.heart.org/HEARTORG/Conditions/More/CardiovascularConditionsofChildhood/Patent-Foramen-Ovale-PFO_UCM_469590_Article.jsp#.VyK1QhMrI0Q
So what were our options...at this point I am still having daily migraines. The drugs they have tried have now failed and I am trying yet another new treatment. I still can't drive or work. I have dizziness, blurred vision, vertigo and migraines every day and a whole host of side effects from the medications.
So we could wait in Colorado for 2 months before we could be seen by the cardiologist. Or fly back to Houston and be seen that week by some of the top cardiologists and neurologists and gastroenterologists in the field.
With heavy hearts we packed up our kiddos and left them with their amazing Grammy and Pops and flew back to Houston. Hoping for answers, filled with questions, and anxious to get better.
Let's talk about Houston.
Why did we go there?
Well if you don't already know, it is a medical mecca. There are seriously brilliant minds there. And we have amazingly kind family who live there who offered to help us to get in to see some of the top doctors in the area of neurology and neurosurgery there so we hopped on a plane and went.
Before going we had literally been told by doctors in Colorado...
"No further follow up was needed on the cyst in my brain, but we don't know what is going on and why you are having all the symptoms you are having, see yet another specialist."
"The migraines that have been going on for 30+ days...would go away on their own,"
"There was nothing that they could find that was wrong but something was certainly wrong with me, they just didn't know what and I was in the hands of specialists to try trial and error with drugs to see what would work."
When we went to Houston with the help of my Dad's cousin and his wonderful wife we were treated with such amazing kindness. Every doctor that we saw there gave us so much valuable information. They had a wealth of knowledge and each one pealed back another layer of my complex case. We came home with so many new ideas and things to try.
But then trying to transfer that knowledge back to our doctors here has proven to be a ridiculous challenge. I am incredibly grateful for the medical community and thankful for how hardworking and professional the individuals are within that community. But like education there are aspects about the system which bog it down and slow down the rate at which a person is able to receive the care they need. I am not going to continue to rant about this but it has been terribly frustrating during this process.
So we came back to Colorado and tried all of those wonderful things they told us to try and there we were 4 weeks later and...the echo results are in.
Turns out I have a PFO patent foramen ovale--or a hole in my heart. Read below for more info.
http://www.heart.org/HEARTORG/Conditions/More/CardiovascularConditionsofChildhood/Patent-Foramen-Ovale-PFO_UCM_469590_Article.jsp#.VyK1QhMrI0Q
So what were our options...at this point I am still having daily migraines. The drugs they have tried have now failed and I am trying yet another new treatment. I still can't drive or work. I have dizziness, blurred vision, vertigo and migraines every day and a whole host of side effects from the medications.
So we could wait in Colorado for 2 months before we could be seen by the cardiologist. Or fly back to Houston and be seen that week by some of the top cardiologists and neurologists and gastroenterologists in the field.
With heavy hearts we packed up our kiddos and left them with their amazing Grammy and Pops and flew back to Houston. Hoping for answers, filled with questions, and anxious to get better.
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