The day after we spoke to Boockvar we had a call with Dr Liu who is based out of NJ. He’s also a very accomplished surgeon, specializing in Paragangliomas. At this point in time it’s strange to say that we are surprised by anything but he managed to give us a completely different perspective on things.
First he pulled up my MRI and began to go through it in detail with us. He talked about the three main types of Paragangliomas – carotid body, jugular, and vagal (very simplified)
The one I have is the Vagal one and it’s attached to my vocal cords. Dr Liu explained to us what the procedure would look like if we went the surgical route – how he would approach it, how his team would coordinate with each other etc. He explained to us that he views removing these tumors almost like hes disposing of a bomb which I thought was pretty cool.
After a lengthy conversation he presented the options that we had already been given
1- I do nothing in terms of treatment, continue to get regular scans, and monitor it.
2- I get surgery to remove it and accept the risks.
3- I get radiation treatment.
Up until now option 1 was my least favorite but after talking with him it’s now my first choice.
His recommendation was something like this:
“You’re a young guy, and you currently have no symptoms. You have no trouble swallowing, talking, eating, and are not in any pain. If we remove it you are very likely going to have issues with all of those things and you may never be the same again. I have nothing to offer you that will improve your quality of life, only potentially worsen it.”
Because of the tumors proximity to my vocal cords I could end up with a permanent raspy voice, or even worse, lose my voice. As scary as all the above sounds I was very appreciative of Dr Liu’s honesty. He also went into detail about how he loves his job, that he feels like he’s good at it, and he enjoys the challenges of removing these tumors. Having someone say that but then also turn around and recommend not to have surgery it a huge win in my opinion. He suggested we just monitor it, see if it’s growing, and make a decision from there.
He then referenced a scene from the movie Braveheart (link below)
So as things stand now we currently still have the above three options (Hold, Surgery, Radiation) all of which are dependent on if the tumor is growing or not.
We are now scheduled to go to Washington DC on Sep 9th for more scans.
My energy, thoughts, affirmations, and meditations, will now be directed towards the tumor not growing. It would be nice to be able to just keep an eye on it, not have the risk of surgery, or the annoyance of radiation.
Thank you for reading.