Grand rounds today at Barrow Neurological Institute

Today went really well. I estimate there were 50-60 physicians in attendance, my dad thought it was more like 80. I definitely learned a couple things! Dr. Sejvar was wonderful. He was very nice and so well-informed that it was good to hear him speak.

He let me have a few minutes at the end to talk about the CJD Foundation, so I explained what the Foundation offers and how the folks there can help you with the dreaded autopsy – all for free.

The importance of autopsy
The key thing is you don’t have to pay for an autopsy in a suspected case of CJD. The Foundation will hook you up with the NPDPSC and they’ll take care of it for you. Not every family knows this and not every doctor does either. It’s important for the surveillance of the disease in our country.

But in my case, it gave me the genetic answer I needed so badly. So I’m very grateful we were able to get an autopsy done on my mom. It was tough to get done because she was dying so fast and we were having a hard time finding someone who would do the autopsy. The NPDPSC finally found someone in New Mexico to do it and my mom’s body made a posthumous trek there and back! But the information from the autopsy was priceless because, as far as I know, I am the first person in the family to obtain it.

What I learned today
Two things in Dr. Sejvar’s presentation really made sense. I’m sure I’ve griped here on the blog before about a lack of a clinical diagnosis with CJD. It makes you waste precious final days with your loved one as doctors try to diagnosis the problem with a million tests. If only there were a diagnostic test that could give the answer sooner so that families wouldn’t have to go through so much run-around in hospitals!

One of the tests my mom endured a couple times was the EEG. It didn’t show what we were looking for at all and, at one point, even showed improvement in her brain. That is something I have never understood because I was seeing a decline at that time but the EEG was coming back saying she was fine. Dr. Sejvar today explained that sharp waves in the EEG present at some point in the illness but are less pronounced as the disease progresses. That explains why the EEG looked fine in her final two weeks with us – it was the end of the disease’s progression.

Hey – that’s one question answered. It’s not huge, but I had an “a-ha!” moment. I’ll take them as I can get them!

The second test my mom endured as they tried to diagnose her was the spinal tap, or the 14-3-3 protein test. That test came back negative. Guess what? Sensitivity of that test decreases as the duration of the disease progresses. That makes sense now, too, because it was done towards the end of her quick battle with CJD. So another mystery was solved today in my mind.

A new point of view
I was pleasantly surprised to learn a new point of view today – that of an OR nurse. She approached me after the auditorium began to clear out and asked me if my mom had had a biopsy done at Barrow. Yes, I said. She asked when, so I told her it would have been the end of October in 2004. Her face darkened and I could tell she was mentally trying to figure out if she would have been in the OR that day.

Then she asked me how I felt about the biopsy and if it was something I chose to do. I said not really, it was more of a matter of being told by Dr. Walker that this was what we needed to do. I didn’t question it at all. I explained to the nurse that this was because we had two possible diagnoses for my mom at the time; either she had cocci meningitis (valley fever infecting the brain), or she had CJD. She was being treated for the cocci but we needed to know one way or another what we were dealing with and that’s the case for doing the biopsy. You need to know if the disease is CJD or something else that you can cure. I do believe in doing the biopsy for that reason.

Remember: you cannot definitively diagnose CJD without an autopsy.

How the OR nurses feel
This is brain surgery and it does have some risk to the patient. Why possibly mame a young person for life if it doesn’t turn out to be CJD? That was the point the nurse brought up. She was curious because she didn’t know what the patient or the patient’s family is dealing with outside the OR. She says sometimes in the OR they get these orders and wonder if they are really necessary. It can cost the family a significant amount of money and is extremely invasive. (My mom’s was covered by insurance). For the nurses, the risk of infection is frightening and that is an understatement.

I could see where you would question the necessity of doing such a surgery as a nurse. Your health is now on the line by being in the room. You could be infected with the fatal disease. Of course you’d be asking yourself, “how important is this? Is it really worth me risking my life for another person?”

I guess I had never thought about that before. I’m grateful to that nurse for bringing it up. That’s yet another reason why we need a clinical diagnostic test so badly! The nurses don’t want to deal with the drama any more than the doctors and patient’s family want to deal with it.

In closing...
Jeanne White was there too with my father and I and I’m glad she came. It was also nice to see the doctors we had worked with two years ago when my mom was there. It was a reunion of sorts! I am glad to see so many people care about this disease enough to spend an hour with us today. The CJD Foundation was well represented, so I’m confident patients who come to Barrow will be taken care of properly. I think they already are. Barrow sees cases from all over the Southwest all the time. Dr. Walker even told me there were once two cases in one week!

We really have it easy in Arizona because of Dr. Walker and Barrow Neurological Institute. Dr. Walker knows what she’s looking at when she sees a case, she knows all about the Foundation and about the NPDPSC. CJD is also a reportable disease here in Arizona. We’re so far ahead of other states that it makes me feel good. That means all of us here can concentrate on other things related to CJD, like Grand Rounds.