6/18/2016: This may be a long post. Not sure because...I just started typing it! Please share this after reading.
The teacher in me makes me tell these personal stories because if it helps one person who reads it then it is worthwhile. It also helps me deal with things on a personal level by letting me air these things without bottling it up. It actually helps me understand it by "talking" through it.
The Thompson family never seems to do things the simple way. If there is an exotic disease or condition out there, we have it or get it. This time it is a saga of Katie Lynn Thompson (my now 26-yr-0ld daughter) which is far from over but finally headed for what we hope is a happy ending.
In 2010 Katie went for an mri because of what we thought was a type of tinnitis (which is ringing in the ears). The doc came back and said your ears look fine but you have a lot of "spots" on the right side of your brain and sent her to a neurologist. After a LOT of tests they told Katie she had Protein S Deficiency. (PSD is a thickening of the blood which causes blood clots) Katie then started taking coumadin shots EVERY DAY for FIVE years! (We researched PSD and Katie had none of the problems other patients had but, you know, you trust your doctors)
She had to change hematologists (blood doctors) because she moved and her new hematologist told her you DON'T HAVE PSD! So, she changed neurologists, for obvious reasons, and started over.
Last Tuesday Katie got up and couldn't walk. Her left side was too weak. Finally we got her an MRI and as we were driving home her doctor called and said to turn around and go to Vanderbilt University Medical Center immediately. We got there on Tuesday afternoon and spent 28 hours in an adult emergency pod waiting for a room. The nurses were GREAT as were the doctors and getting to listen to the stories of people in the beds around us (separated by a curtain) was very entertaining.
!!! Now, please pay attention to this. If you know my mom and see her do not mention the word stroke. Scares the life out of people my age and older. Stroke to them is a death penalty. PLEASE, if you discuss this with her do not mention that word.
We know now that Katie had a stroke last week and, yesterday in the hospital, had another one. It causes her to lose all strength in her left side and her speech becomes garbled. SHE IS FINE NOW and can speak fine. Still a little weak walking.Why does a 26-yr-old have a stroke (or, 6 years of mini-strokes)? I'll explain in a moment but this has a very potential HAPPY ending. Keep that in mind as I ramble on.
CT scans, MRIs, and an angiogram have finally given Katie a diagnosis, and a prognosis, that she has been hoping for six years. Six years of deadends, misdiagnosis, etc but we are finally SURE of what is going on...and it can be FIXED.
Katie has a rare condition which affects less than 1 in 100,000 people in US (like I said, we don't do things easy around here) called Moyamoya Disease (I'll post a link at the end of this) which is a progressive cerebrovascular disorder caused by blocked arteries at the base of the brain in an area called the basal ganglia. The name “moyamoya” means “puff of smoke” in Japanese and describes the look of the tangle of tiny vessels formed to compensate for the blockage. (Pictures in comments below)
The blockages are caused by weak blood vessels bursting and interrupting the flow of blood to parts of the brain. Hence, the strokes.
Katie is actually lucky in a way because there is now a way to treat this and end the condition once and for all. In what sounds like a science fiction procedure (and in a way it is) they will bypass the weakened arteries by taking a blood vessel that feeds her scalp and use it to grow new vessels to supply her brain. Amazing.
The brain is a miraculous thing. The left side of Katie's brain has started pumping blood to the right side of her brain to "help out" because the left side realizes the right side is needing more. Unbelievable.
So, in a few weeks (after she has regained her strength) Katie will be the first Thompson in our immediate family to undergo brain surgery! This will be performed on the right side of her brain but not deep into her brain. Thank God for that. In 6 months to a year she will most likely have the same procedure on the left side.
The great news here is that we were facing prognoses that were only drug-related. This procedure (and the later one) can actually solve her problem once and for all.CoachT note
: The misdiagnosis Katie had for 5 years is/was upsetting for many reasons. However, things have a way of working out. Her wrong diagnosis caused her to take a blood-thinner, coumadin, which may have saved her from more strokes the last few years. It also delayed the right diagnosis until now and, after researching, they have come a long way in treating moyamoya in the last five years. We feel comfortable with the procedure now so maybe all of this was a blessing.
I will post a couple of interesting pictures from my cellphone in a few minutes.
Please keep in mind that the purpose of this is to educate others. I hope no one ever goes through this but there might be someone out there that this could help right now. Please share this just in case.
Katie is very relieved to at last have a diagnosis. The link to her disease is at http://www.ninds.nih.gov/disorders/moyamoya/moyamoya.htm
Here is a normal picture of the left side of a brain taken today. You can easily see the carotid artery and how it branches out and supplies blood to other areas.https://www.facebook.com/photo.php?fbid=10155034202408079&set=p.10155034202408079&type=3&theater
Here is an angiogram of Katie's right side of her brain.https://www.facebook.com/photo.php?fbid=10155034205923079&set=p.10155034205923079&type=3&theater
The differences are rather obvious.
Here is the first of a 6 video series by a girl named Katie and her journey from diagnosis to surgery and beyondhttps://www.youtube.com/watch?v=jm-2Xx40nLg
Any of you who like to see this kind of thing, like I do, will be amazed at this procedure. It is amazing what they can do. If you are squeamish at all then don't watch. The video is from 2012 and they have improved it even more since then, making it a smaller area that is affected. I have encouraged Katie not to watch yet but at some point before she has the surgery we will. I always want my kids to know what they are getting into and accept it for what it is: https://www.youtube.com/watch?v=pVVuZK6xlKY
7-9-16. Katie had a BOLD MRI on Thursday (7/7/16), meets with her doctor on Tuesday, and surgery is scheduled for 8AM on Wednesday, July 13th.
Updated: 7/16/16 Katie had her surgery on the 13th, as scheduled, and everything went well!! She was in surgery for 6 1/2 hours, her face is now swollen, Dr. Rohan Chitale did a great job. It will be a few months, though, until we know if new blood vessels are forming.
No incision pics until Katie OKs it.
She will undergo a second surgery, on the opposite side, in 6-12 months.
I am posting this pic with Katie's permission. The purposes of this entire posting has been to help me deal with it and put things in perspective but also to educate people about Moyamoya.
8/16/16: Katie is doing great, back to teaching. Just returned from Vanderbilt with after meeting with her surgeon. Everything looks good. She is going back in November to discuss her next surgery which could be as soon as December.
Updated: 11/26/16- Katie's next surgery will be on 12/14/16. This one will be on the right side oof her brain and will be her last surgery for this condition.