CF Happens

LOTS OF INFO AHEAD, STAY UNTIL THE END

It’s been about 8 months since the burning pain in my left thigh started. My lower back has also been hurting more recently. My lower back has always had an annoying tight/pulling pain but it has been constant and much more annoying in recent months. Coughing and sneezing are painful. If I don’t brace myself well enough, it is stabbing sharp shooting pain and you know I cough ALL THE TIME! Haha.

After my EMG findings of L4-L5 damage, my primary doctor referred me for a lower lumbar MRI. I finally had that MRI. After the findings (which I am about to share), they wanted another lower lumbar MRI with and without contrast to get a better visual on what’s going on.

Much to my surprise…I have a “large lesion” in my L2-L3 neural foramen space, which is the opening in the spine where the spinal nerve roots exit the spine and connect to the rest of the body. The lesion is called a “peripheral nerve sheath tumor.” It’s a mass of the nervous system. “Tumor” is just another word for a mass or lesion. Just because they used the word “tumor” in the report doesn’t mean it’s cancer. Please, don’t freak out!!! It is a slow growing mass. These type of masses pop up out of nowhere and aren’t usually cancer. When the mass is removed (more on that below) it will be sent to pathology to be tested. I’m not worried about it being cancerous at all.

The mass is 2.4cm x 1.7cm x 2.0cm which is about the size of a single (out the shell) peanut (give or take). Here’s a visual if you’re a visual person like I am…

Basically the mass is compressing/consuming the nerves which is causing the pain. I was not expecting a mass/lesion on my spine at all to be causing these issues. I also have “foraminal stenosis” in my L5-S1. Which means that area is blocked and there is a bulging disc in that area as well.

The damage in my L4-5 is an annular fissure. When a fissure occurs, the fibers can fray, break or separate from the bone. I’m not sure how that damage occurred. It could just be degenerative (thanks to CF) or a trauma of some sort.

It’s a blessing that the mass is in my lower back. A lot of times these type of masses are found “on accident” during a chest CT looking for other lung issues. Those masses are in the “thoracic” area which is by the lungs. (Refer to the diagram above) Those are a much more invasive surgery having to navigate the chest/lung wall for someone with CF. I’ll take lower lumbar mass removal for $1000 Alex! (In my best Jeopardy contestant voice) Haha.

Of course, it’s not the news I wanted but I’m happy to have some answers as to why I’ve been in so much pain. I kinda feel vindicated because at times I felt like I had to convince doctors/medical professionals I wasn’t making it up. It in fact, is NOT all in my head. Once again, the thigh pain starting 2 days after the Reclast infusion was purely coincidental, not linked at all.

I’m being referred to a spine neurosurgeon to talk next steps which will be surgery to remove the mass. I will hopefully hear this week when that appointment is scheduled for. Thanks to CF, I will be admitted a few days before surgery as per usual when having a planned surgery to get started on IV antibiotics and attempt to get my lungs as good as they can get before going under anesthesia. From what I’ve read, my recovery from surgery will be 4-6 weeks before returning to normal activity. Of course, my normal activity is not what normal people’s activity is so I should be good to go in those 4-6 weeks. Haha.

I have A LOT of worriers and over thinkers that care about me in my life, so I chose to wait to share an update until I had solid answers. I’ve said it before and I’ll say it again…if I’m not worried, you don’t need to worry. I don’t typically get nervous about medical stuff in my life. It is what it is. Can’t change it. I just go with the flow and do what needs to be done. Giving up is NOT an option.

Until next time…