CF Happens

Sometimes in life CF (Cystic Fibrosis) happens…pun intended

recent posts

  • Thigh Pain/Lower Back Pain Update!!! We have answers!!!

    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.

    Diagram of the different sections of the spine. L2-3 is where the mass is. L4-5 is where I have past damage. L5-S1 is where the bulging disk is.

    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…

  • Had a “Not Feeling Great” Appointment with CF Clinic Today

    My lungs have been more tight and wheezy for about a week and a half or so. The tightness and wheezing got worse while we were in Nashville the first weekend of August. I sent a message to my CF doctor through the patient portal last Friday at 9pm to ask for Xopenex (another type of Albuterol) and possibly a prednisone taper to hopefully get some relief. I was hoping that some person from the CF clinic had nothing better to do than check the patient portal on a weekend.

    I had also messaged one of my RTs from clinic (now retired haha) on Facebook asking if they thought Xopenex would open me up better because DuoNeb was not giving me any relief. They gave me their thoughts. They checked in with me the next afternoon to see how my breathing was. Of course, no change, still tight and wheezy. They asked if I had a response from the portal yet. Nope, not yet. About an hour later they messaged me saying that my doctor would be calling in some prednisone for me. It pays to know someone in healthcare on the weekends. haha. I never expected them to do that for me but I’m kind of a special patient and all. haha. The office gal messaged me on Tuesday to see how I was doing. What do you know, no better. Hence, the “sick” visit today.

    My lung functions were steady at .86L/31% (FEV1). We agreed that this is all my crappy asthma being a butthead. We decided to up my prednisone to 60mg for 5 days (started at 40mg with the original Rx), 40mg for 5 days, 20mg for 5 days and then 10mg for 5 days. He also called in the Xopenex to see if it will open me up better. Most people that opt for Xopenex is because Albuterol makes their heart race because it activates beta-2 receptors in the body which dilate the arteries to increase blood flow. Xopenex typically doesn’t have the same side effect for most people.

    We also discussed what the long term solution is to my bad asthma flareups because long term use of prednisone is a no go. There are too many side effects/follow on issues when you take prednisone long term. Plus prednisone doesn’t work that great for me like it used to anyway. We decided to try another asthma infection. I received my first dose of Fasenra in the office today. I will continue the injections at home like I did with Dupixent (which didn’t work for me). I will do one dose every 4 weeks for 3 doses and then every 8 weeks to follow. We’re hoping that we can find something that will help relieve the inflammation and open me up so I’m not so tight and wheezy. My doctor knows that my body does NOT play by the rules or go by the books. What should work, might not work and what shouldn’t work, in theory, might actually work. You just never know with me. I remind him that I make him really use that degree of his. Not to mention the connections he has with other specialities coming in clutch in a time of need. haha.

    I go back in 5 weeks to check in. Fingers crossed that I get some relief because the whole laying in bed and hearing myself wheeze over the loud fan is quite annoying. Not to mention, the rattle from the wheeze and the tightness. Very inconvenient. haha.

    Until next time…