An NF Hero’s Surgery Journal: Part I

Jan 9, 2019, Posted in Video, Awareness, Community, NF1, NF Hero

Aidan Fraser is 18 years old and lives with NF1. He has a large plexiform neurofibroma on his neck that extends into his brainstem, down his back to his lungs and down his left arm. He’s had nearly two dozen surgeries. His most recent surgery took place in November 2018. Before, during, and after his hospital stay, Aidan kept a journal and a video diary detailing what was supposed to happen, what really happened, and how he was feeling. We’re honored to share Aidan’s journal entries in three parts.

PART I

Sunday, October 28, 2018 - Pre-Surgery

Let me introduce myself. I am Aidan Fraser and I have Neurofibromatosis Type 1. I am 18 years old and this is my first blog. I have had so many surgeries, I have lost count, but I think it is nearly 20. I have a rather large plexiform neurofibroma on my neck which extends into my brain-stem and down my back to my lungs and down my left arm. I have been paralyzed twice and have a spinal fusion and spent six months in a halo. I thought it would be interesting to share my experiences of surgery with you.

To begin, let me try and answer a few basic questions:

Why am I having surgery?

I need to have three small tumor nodules removed from my big tumor on my neck. Yes, I have tumors in my tumor! There is a theory that these kind of nodules may turn malignant so I always try and get them removed when they start to grow. I’ve had six removed previously in three operations and the biopsies all came back as intermediate, which means they are no longer benign and might be starting to turn malignant, so I like to stay on top of it.

Who are my doctors?

I’m lucky to have the same medical team at Montefiore Medical Center who have been treating me for over 12 years, and the surgical team has done all my operations since I was six. My Neuro-oncologist was a friend of my dad’s and has been with me since I was 2½ years old, and I’ve been a patient at the NIH since I was 3. All of them come together when I have a surgery so it’s a little bit like a family gathering!

What happens in the surgery?

The surgery should take 3-4 hours. Because I’ve done so many of them, we have the routine down pat. My mom drives me to the hospital early in the morning, we check in and are given a room on the 9th floor where all the doctors and nurses know me. However, I can never remember who they are!

Sometimes I am really lucky and have a room to myself but usually I end up sharing. After an hour or so the doctors start coming round to check on me, and usually bring all their residents with them, so my room is always full of people staring at me like I’m a guinea pig, which really annoys my roommate. I don’t think any of them have ever seen a plexiform neurofibroma before and I am only too happy to show off my glorious tumor. Then the surgeon comes in and shoos them all away and we chat about the operation. He takes a sharpie and draws some big marks on my tumor so he knows where to operate, and I remember the lines don’t ever seem to wash off and will be there for weeks!

Then it's time for the operation. I always feel super anxious so the nurse gives me a “happy drug” to reduce my anxiety. I am now feeling really good and super happy. Apparently, I also say some inappropriate things when I’m on the medicine but I can never remember! They then come and put me on the stretcher and take me to the operating room. My mom takes a photo of me grinning and comes with me to the OR. She stays with me till I go to sleep. (Then she goes outside and cries).

What does the recovery entail?

The recovery is painful and I am on a lot of nerve-pain medications, including Methadone. I will have drains in my neck to prevent swelling which always feels strange and means I can’t rest my head properly. I get paranoid about them falling out or getting pushed all the way in and disappearing inside my tumor. I find them really creepy!

I am usually pretty drowsy for the first few hours and just try to eat and drink a little as I’m always starving as I can’t eat or drink for 12 hours before the operation. My mom is there and talks to me but I don't remember what she says. Ok, she tells me over and over how much she loves me.

The nurses also keep coming in to check my vitals, which they do over and over again every few hours all day and all night which is super-annoying and makes it hard to sleep. However, they are the nicest and kindest people you could ever meet, and I do feel badly that I'm irritated whenever they come in the room.

A doctor also comes in to check on me every morning, along with at least 10 residents, which is also super-annoying and makes me feel like I’m in a zoo. The residents also each bill my mom loads of money just for walking in the room which she will then spend hours arguing with the insurance company about a few weeks later!

If all goes well, I’m hopeful to be back to school in a week to ten days. Secretly, I don't mind it taking a little longer!

When will I get to go home?

My mom and I hate staying in the hospital after surgery so we push really hard to go home after just two nights. They would usually keep anyone else in for at least a week, but they let us go because my mom is basically a nurse and knows how to take care of me. She also knows when to go back to the hospital if things go wrong. Ok, and she is also super-annoying and pesters the doctors to let us go home until they cave in and say yes!

What are my experiences with anesthesia?

I’m fortunate to never have had problems with anesthesia despite having a compromised airway.

Could there be any complications?

There is always a chance of a blood clot, which I have had before. This causes tremendous swelling which is why we now use drains.

How many surgeries have I had previously?

I have had at least 16 surgeries since I was born, and I think it is actually closer to 20. Some have been bigger and more memorable than others. I have been paralyzed twice, have had a spinal fusion where they used my ribs as to recreate my vertebrae, and spent six months in a Halo. NBC did a feature on one of my surgeries and I was all over the news as the surgery had never been done before. That was really embarrassing.

How am I feeling?

I’m very nervous, as I always am. I get concerned about complications and I always hate going into the hospital. I tend to have anxiety in general so this just makes it much worse. I never seem to get used to it, but I guess you really can’t.

What are my rituals during surgery?

Every time I have a surgery coming up I weirdly crave apple juice, which I never drink otherwise. I drink it from the moment I go into hospital until the moment I leave. It's also the first thing I ask for when I wake up from surgery. Also weirdly, my mom starts drinking orange juice which she also never drinks!

How do I mentally prepare?

I know it may not be the best strategy, but I just try not to think about it because I have anxiety and it makes it worse when I dwell on it. I do speak to my therapist and my mom about it, but for the most part I try to pretend like it’s not happening.

I made a short video this evening which summarizes how I feel.

Read Part II here and Part III here.

 

Information presented in this post reflects the thoughts and experiences of Aidan. For more general information about neurofibromatosis, visit www.ctf.org