Dad's diagnosis

Hi everyone,

Sorry I continue to be slow with updating the blog.  As many of you know dad and I have been in California since Tuesday and are in the pre-op testing phase of his treatment.  Mom will be flying out to join us tomorrow and surgery is scheduled for next Wednesday.  Unfortunately we've been meeting ourselves coming and going since we got here and so my time and computer access is very limited and I can't post from my phone.  I promise I only have a few more back entries and we will be caught up.  Until then I have real time updates on Facebook

I know a lot of people wonder what exactly happened to have an otherwise healthy man flying across the country for brain surgery.

It was about 10 p.m. on the night of Monday, August the 23rd and I was sitting in my room desperately trying to figure out how to start my sweater for the recent Spud & Chloe knitalong.  I was already frustrated and mom started yelling, "Sarah!"  I rolled my eyes and was about to answer when she started again, "Sarah!"  Now I was just annoyed because that's something grandma does...calling someone's name repeatedly without letting them answer.  "SARAH!  There's something wrong with your dad!" 
So I go running out from my room and dad is stretched out on the floor of the upstairs hallway.  He's trying to talk but it's coming out as gibberish.  His right arm isn't working.  Pretty much all of the classic stroke symptoms.  It took a minute for my supposed pre-med brain to kick into gear and by then mom had already given him four baby aspirin.  We should have called 911 and if you are ever in this situation you should call 911.  So we called our family doctor instead, only he doesn't answer pages after 10 p.m.  So I called his cell phone which he once called me from and so I saved the number.  I probably shouldn't have done that, but I was desperate.  So if you're following the blog Dr. Showers, erm, sorry about that.  Dad was acting funny.  And by funny, I really mean funny.  Engineers aren't exactly stand up comedians, but he was cracking jokes like Chevy Chase in the Christmas Vacation movie.  He was laughing and had both of us laughing.  When I couldn't reach the doctor I called Brian and got some advice via Facebook from a friend who is a nurse.  While the E.R. would have been the best option, we all agreed that he would make it 'till morning.

Mom had dad at Dr. Showers' office as soon as she got off work Tuesday afternoon. 
He thought it sounded like a TIA, or transient ischemic attack, commonly called a "mini-stroke."  Unlike major strokes, the symptoms resolve very quickly.  After that things happened pretty quickly.  We found out that with his insurance there is 3 day waiting period for the MRA and MRI he needed - unless the patient is in the E.R.  Fail.  So Dr. Showers made some calls and pulled some strings and got him in that afternoon.  And then we waited.  The tests showed some problems so they ordered a CT scan for Wednesday.  We were supposed to get the results the same day or Thursday, even though our doctor doesn't work on Thursdays.  Of course, nobody called.  So we called and called and called and couldn't get any straight answers.  I don't care if you have no new, bad news, good news, whatever.  If you say you're going to call, if you are supposed to call, then CALL!  Eventually the nurse of a different doctor in the practice called us and said that there weren't any problems in any of the scans and not to worry about it.  My mom was like, "Um, no," and explained the situation.  The nurse said she had been told to say that and apologized.  Everyone has good intentions, but medicine is far from perfect.

Friday came around and we did finally get to talk to somebody from our doctor's staff.  I told mom she should have yelled at them, or something.  That was the second time in six months that we have been in this situation. I tore a muscle in my leg last May and ended up with cellulitis and they were worried I had a blood clot too and sent me for an ultrasound.  I was supposed to hear the same day, also a Wednesday, and ended up not hearing until Friday that I was going to be okay.  If you've never sat still for two days wondering if you were about to have a pulmonary embolism, well, it's not fun.  The tests showed that dad had approximately a 70% narrowing, or stenosis, of the left middle cerebral artery in his brain.  The initial report assumed that this was due to atherosclerotic buildup (plaque in the arteries usually caused by high cholesterol).  He has taken a daily baby aspirin as well as medicine for mild hypertension for years.  Immediately the baby aspirin was upped to an adult aspirin, he was put on a statin for his borderline high LDL "bad" cholesterol, and Plavix to thin his blood to prevent another stroke.  Dad was scheduled for an cerebral angiogram/arteriogram (they're the same thing) the next week.

Mom can't get off of work, so I went with dad for his arteriogram.  He was scared of course, but Uncle Pat said it wasn't too bad.  I was there before the procedure and that's when we met our diagnostic radiologist, Dr. Dana Tomalty.  He explained that in the procedure they essentially puncture the femoral artery in the groin and run a catheter which emits contrast dye for imaging up through the trunk of the body, through the vasculature of the heart, and into the brain.  During this time the patient is awake and must be able to follow commands such as "breathe" or "don't breathe" and many pictures are taken.  Once the procedure is completed steps must be taken to keep the femoral artery from bleeding out.  Huntsville Hospital uses a gun and titanium clip to seal the hole.  After that the patient must be prostrate for several hours before he can go home.  Dad did well with the procedure, although he felt that they had played down the amount of pain he would feel.  While he rested Dr. Tomalty stopped by and said that dad has great arteries with only maybe a tiny bit of atherosclerotic build up in one place.  However, the stenosis was as severe as expected.  Based on his experiences he believed that dad had moyamoya disease which was causing his artery to grow closed.  When somebody has atherosclerosis a stint can be placed in the artery to hold it open.  This doesn't work in moyamoya patients because the artery will still continue to grow closed.  The only real option is a bypass of sorts.  Dad rested some more as I rapidly Googled things on my phone.  We were allowed to leave the hospital by lunch time and we went to Little Tony's for pizza and then Books-a-Million.  After that he was feeling pretty bad and we went home.

For the rest of the week we spent a lot of time online reading about moyamoya disease.  Having the ability to research medical conditions yourself is both a blessing and a curse.  We've all seen those mystery diagnosis shows where the frustrated parent solves her child's misdiagnosed case herself through persistence and the Internet.  Similarly I can also tell you from my own shadowing experiences that anybody can put anything on the Internet and somebody somewhere will believe it.  So just be careful and try to stick with reputable resources, such as medical school websites or articles you can pull up through Google Scholar.

The next Tuesday afternoon mom, dad, and I went to Dr. Tomalty's office downtown to look at images from the procedure.  It was so cool.  He had four giant monitors in his office and could pull up identical pictures from both sides of the brain and compare them.  It was also a little humbling, because we could all see the problem in exquisite detail.  The one artery was almost closed and dad's collateral blood vessels were growing to try to make up for the loss of blood flow.  Once an artery completely closes and the collateral vessels take over, the patient is no longer a candidate for surgery to repair the problem.  Also, they might have major strokes and could die.  Dr. Tomalty said that there were a few places in the country where he could possibly be treated, such as Virginia and California.  Through our own research we had already learned that Stanford had the largest moyamoya program in the country, maybe in the world.  Dr. Tomalty had connections there so he offered to contact the Dr. Steinburg, the head of the program, and also to send all of dad's reports and scans.

Next we had to see a local neurologist.  So that Thursday mom, dad, and I went and met with Dr. Amit Arora.  Honestly, we weren't impressed.  He didn't seem prepared for the appointment at all and said he would have to review the scans and get back with us.  He also realized something I realized, the potential to study dad and Uncle Pat since the condition is presumed to be genetic and they are identical twins and thus have the same DNA.  He should have studied the scans beforehand.  It's not like its a couple of x-rays.  There were hundreds of images.  He said he would contact lots of people he knew to get information and opinions and would get back with us, but he never really did - although he did agree that it was likely moyamoya.  Mom was glad because she didn't want dad to be shipped here and there for research purposes when what he needed was to get better.  We decided to pursue Stanford on our own.

A week or two went by and we heard from Dr. Steinburg in California.  He reviewed everything Dr. Tomalty had sent and also agreed that it was moyamoya, said that he would be happy to have dad as a patient, and even suggested a specific surgery to correct the problem.  He also said that he saw some stenosis in the right cerebral artery, but not enough to treat right now.  Some people have two surgeries a week apart if both sides are affected.

It was a lot of information to take in in a very short time!  And as you can imagine it was only the beginning...

Love,

Rocketgirl