CF Happens

Yesterday was my back surgery to remove the nerve sheath tumor (called a schwannoma) in my L2-L3 area in my lower back. As you know, I named the tumor “Pete” because he was the size of a single (out of the shell) peanut and “Pete the Peanut” just sounded good and rolled right off my tongue. Haha.

The surgical case before me cancelled so I was able to get everything going a few hours early. Surgery took around 3 hours. I was in recovery a little longer than I could have been. We had to work on getting my pain under control before moving me to my room.

The surgery didn’t end up being as invasive as my surgeon had anticipated. I did NOT end up needing a drain, which is a good thing.

I am on a neuro surgery recovery floor and not the CF floor. This makes getting all of my normal CF inhaled meds challenging because the RTs (Respiratory Therapist) that come to this floor are not the typical CF patient RTs. This means telling multiple people the same thing as far as what I need, when I need it and how I need it.

SIDE NOTE: You MUST advocate for yourself when things like this happen. This is also why knowing the names of what meds you take, why you take them, the correct dosages and when you take them is SO IMPORTANT!! I’m very surprised that there are so many people that have no idea of all the meds they take and why they are taking them. Please educate yourself!!

Now back to surgery update stuff. Haha My surgeon told Jason that he’s anticipating me being inpatient for 2 days. Obviously, that depends on how I’m doing in general. 🤞🏼🤞🏼 Fingers crossed that it is in fact only a 2 day stay.!

I’m not able to do the vest as airway clearance at the moment so I’m using the tried and true method of “huff coughing” to help shake things up. Huff coughing is basically when you push all your air out of your lungs and then cough cough cough! With that said…coughing hurts so much right now but I can’t not cough, I have CF, duh. Haha.

With me not being on the CF floor that means that I was admitted under neurosurgery. The internal medicine (floor doc) is also following me, as well as the inpatient pulmonary crew. My CF doctor has final say as far as lung stuff goes though.

My left thigh is more numb than it has been before surgery and the numbness coverts more of the thigh surface. Obviously, the surgery really ticked off the nerves in the area that the tumor was removed. The area where my tumor was removed (L2-L3) sends feeling/sensation to the front of the thighs. I’m hoping some of the numbness goes away. I won’t be surprised if some numbness stays just from general nerve damage that’s been done.

I will have a repeat lower lumbar MRI in the next few weeks to ensure all of the tumor was removed. They are sending the tumor to pathology to make sure it’s not cancerous, which is normal protocol.

So long story short…surgery went well and it wasn’t as invasive as my surgeon thought it could have been. Now it’s time to heal. I’m in a lot of pain in my mid to lower back and left thigh. Yes, I’m taking pain meds and I’m staying on top of them to keep me covered. I’ll update again when I get settled at home, whenever that may be.

Until next time…