This was the last visit for opinions. We have already visited the 10th ranked hospital in the country (Cleveland Clinic) and the 4th (NY Presbyterian) and today was reserved for the best in the country. Saving the best for last!
We met with Dr. L who is a neurosurgeon and happens to be running a long term study in subependymomas. He is an expert in skull based tumors and has performed over 1,500 surgeries. He was very kind and personable which almost made up for the 3 hours that we waited to see him.
He explained that he believed that the brain tumor I have is a subependymoma, which is great news. Of all the potential tumors I could have this is the most desirable. He told us about the study that he is conducting on subependymomas and he happens to be collaborating with Columbia where we just were on Tuesday. He also asked me to participate in their study, which of course I am happy to do.
Dr. L explained that in the study so far they have had 50 patients from John Hopkins who have been diagnosed with subependymomas and of those only 2 people have had surgery because their tumors were growing. After surgery pathology determined that those patients did not have subependymomas, they had another type of glioma.
That means that they have been correct in diagnosing 96% of the time thus far.
Dr. L has a hypothesis that people are born with subependymomas. He believes they could be some variant of “normal” if it is true that some people are in fact born with them.
The last 2 questions that I asked him were these; have you had any patients who have developed hydrocephalus and have you had anyone else who has presented with their tumor in the roof of their ventricle (they usually occur on the floor). His answers were no, no one has developed hydrocephalus. If he did have a patient develop hydrocephalus he would not recommend the procedure that Cleveland discussed. He said that it would be a bandaid and not really deal with the root cause and that in such a case he would remove the tumor surgically which would resolve the excess accumulation of fluid.
To question number 2 he answered yes, he has had a patient who had a tumor in the roof of their ventricle. That patient was one of the two patients who had needed surgery because their tumor was growing and it wasn’t really a subependymoma.
He wrapped up our visit with recommendations similar to Columbia, close follow up to watch for growth and after a few years if we see nothing then we can be fairly certain that it is in fact a subependymoma and I am in the clear.
On the way back to the car I was quiet.
I am a verbal processor, I talk my way through every issue I have. Except for this.
This is the first time in my life where after every appointment I have needed time to really absorb and process what had just happened before I could talk about it. This is different. It has made me realize that one really cannot predict what they would do in any given situation because until you are there it is just speculation. I would never imagine that I would need so much space and quiet time.
When I was ready to talk Patrick asked how I was feeling and I hesitated and said “Well I can’t help but to think about the patient who presented like me with a tumor in the roof and it turned out that it wasn’t a subependymoma.” My husband quite literally put his hand on his head and sighed the biggest sigh you could imagine and said “Amy, we have traveled to 3 top hospitals in the country and you have been given the same news by everyone. They all believe your tumor to be a subependymoma. What is it going to take to convince you”?
This poor man to have to deal with me.
He’s not wrong. I’m not convinced. I want to be. I am very hopeful and optimistic that I am in the 96% and yet….
This is a funny phenomenon. I was thinking about how when it comes to our health we often have a completely different reaction to statistics than in other areas of life. When I hear that there is a 90% chance of rain I assume it will rain. When I hear that there is a 96% that my brain tumor won’t cause problems in the future I think “I’m not so sure, what about that 4%”.
I’m not sure if this is because I literally work in a world of the statistically insignificant with fatal consequences and numbers less than 100% don’t bring me comfort. Perhaps it’s because I haven’t made total peace with my own mortality. Maybe I’m more of a pessimist then I think? I’m can’t tell you exactly, what I can tell you is that I know I am driving people mad! I’m sorry friends.
I also have been thinking a lot about my decision to call my blog “Evicting Roxanne”. This is was a presumption on my part that I would have surgery, that I would chose that path, that there was no possibility of living with something like this. We can chalk that up to another part of this process in which I have grown.
The truth is that this experience is a microcosm of life, it’s complicated, it’s messy, it has highs and lows and in the end it shows us our strengths and weaknesses.
8 thoughts on “Johns Hopkins (Baltimore)”
That fact stood out to me as well! ❤ Love you!
Thanks Tara, sometimes I feel crazy! 🥰
I empathize with the 4 percent part ❤️. Praying for you always. I feel so much hope for you.
Living with uncertainty is hard when we’re used to thinking our bodies can handle almost anything. I appreciate your honesty in sharing your fears and struggles and hopes. Most folks don’t understand what it’s like having a potentially fatal disease as a roommate. Keep things in perspective, enjoy the things you have now and know you are loved
I hope you are able to accept the 4% you don’t know! Sending you hugs and missing you like crazy it hurts. Love you 🥰😘
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Amy, I’ve just finished reading up to this point. Your writing has been quite easy to read. You are loved by so many and you truly are an inspiration to us! I seriously brag about how awesome you are all of the time. I’m angry that things like this happen to the best people. I’m less angry because it’s sounding like you’ve received good news. Thank you for allowing those who love you to follow your journey. I’m always down to join you for a coffee or a hike. Only good things, Leah
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Hi Amy, thanks for the updates. Love your quote at the end! So it looks like it’s good news, even if it wasn’t exactly what you wanted to hear. Keep doing whatever you need for peace and happiness!!
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You may have felt the eviction was physical but perhaps it’s still appropriate in that whether or not you have surgery you can get rid of the feelings and negativity it had brought to you. Evict Roxanne spiritually and mentally. Evolve passed the point where it can affect you: eviction realized. Spin doctors rejoice.
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