Here's what happened at our epic meeting at the University of Chicago yesterday. It was a long day but a good day for us.
We were seated in our appointment room at 3:30pm, within 30 minutes of Molly's appointment time, so we thought there was no way we be there until 8pm as they suggested was possible. Yeah, we left at 7:35pm. Way early! :) It again took nearly 3 hours to get to the hospital. At least I didn't make any wrong turns this time.
We first met with Dr. Yassari. Who is Dr. Yassari? Another neurosurgeon who we didn't know Molly would see. He went through the entire exam just as we did with Yamini, checking every movement and symptom afresh. He was funny too. After a long visit with Yassari, he came to the same basic conclusions about the Chiari and felt surgery was needed. He left the room and said he would consult with Dr. Frim and they would return together. They did, over 1 1/2 hours later. Wowwy, that's a long wait after a long exam.
By the way, Dr. Frim is the big cheese. This is the guy we originally wanted to do the surgery way back just after the diagnosis. He is the guy our neurologist highly recommended as the expert/specialist on Chiari. "David Frim, MD, PhD, chief of pediatric neurosurgery and an expert in congenital anomalies of the nervous system," which means Chiari (via). And we have come to understand that getting an expert at pediatric Chiari on the case is a huge bonus.
So Frim comes in with Yassari and a surgical resident (can't remember that dude's name, but he looked really smart and didn't really say anything). Frim took Molly through the whole dealio again: tests for balance, numbness, and other symptoms. He asked questions about the extent of the problem, pain, and effect on life. He looked at all the MRI film again and explained the details to us again. These guys are thorough. Frim told us all the symptoms are very consistent with Chiari, which was the thing that had us confused. Confusion is totally gone.
Remember I said there were three basic reasons that surgery with Chiari is a must: drop attacks, a syrinx (spinal cyst), or swallowing issues. Frim added a fourth, something about experiencing other neurological effects from Chiari. When these larger problems aren't present then surgery may be offered but not required. For example, the most common Chiari symptom is terrible headaches, migraines, etc. Sometimes people will have headaches with no other major issues, so they simply manage the pain and press on. I've even met a person who has/does this.
But Molly has some of the neurological effects Frim mentioned, including problems with finishing thoughts, remembering things, and mental overload when being spoken to. Frim felt this basically would qualify her for the more necessary camp in surgery, even though they felt surgery was important for the balance and weakness issues as well.
Then Dr. Frim told us that he would be happy to do the surgery if we want him to. Now get this. We originally tried to get with Frim but were told we couldn't even have a surgical consultation until August 30th. So Yamini took on Molly's case instead, and that is what got our foot in the door with Frim. Our meeting with Frim took only two days after they decided it would be best to meet with him. Good stuff. Providence.
Truth is, this is as good as we've felt since the diagnosis. We are really thankful for the large amount of time they have spent making sure they understand Molly's Chiari. We are totally confident in Frim and his expertise. We feel like the fog we were in has lifted completely. He even said that he felt good that the surgery would relieve "all or some of her symptoms." Bout time someone said that. :) We know that there is still plenty of chance that some of the symptoms may remain, but Frim said that because Molly's Chiari is sizable, the odds of a good surgical result are very good. Great news.
So what's next?
1. We have a call in to Frim's nurse to schedule surgery. He said it shouldn't be too long to get Molly in. Maybe a few weeks??? Recovery will be slow and painful, a full 24 hours in the ICU after the surgery and probably another 3-4 days in the hospital. He showed where the scar will be on Molly, and it will be almost completely above her neck hairline (less visible). We also discussed accommodation options for me while she is in the hospital and a handful of other things. Maybe I'll talk about these at a later date.
2. We have canceled our Mayo trip. We were all prepared to go, but we looked at each other after leaving the hospital and knew that Dr. Frim was the way to go. We were downright giddy on the drive home. Chiari is not so much about right diagnosis and making the right decision about fixing it. At least not in the less complicated cases like Molly's. It's about having the right people do the work when it's necessary. Frim is the guy who writes the articles in the journals on this stuff. Plus, we have had three different neurosurgeons do complete exams on Molly with complete agreement on what needs to be done (and they have consulted with others at the University of Chicago as well as outside, all in agreement). We are so thankful to know (finally) exactly what the deal is, what needs to be done, and have a plan to take care of business.
We'll keep you up to date when we know a surgical date or if anything changes. We are thankful for all of your prayers.