On February 4, 2019, I had surgery to remove a benign nerve tumor – called a Schwannoma – from my left femoral nerve. If you’re interested in the details of how it was discovered and why I chose to have the surgery, check out my pre-surgery blog here.
I had never had major surgery prior to this. I had my tonsils out as a kid, and had my wisdom teeth removed a few years ago, but nothing compared to this. It was fairly major neuro/vascular surgery, which was something I wasn’t really expecting.
I learned a lot of lessons throughout this whole process, and grew as an individual. I have a newfound respect for many things, and find myself feeling more sympathetic towards people who have lifelong health issues. Luckily, my issues and complications were only temporary, and for that I am forever grateful.
12 lessons I learned from this surgery and recovery process:
Lesson #1: Always get a second opinion
The tumor was first discovered during an MRI of my stomach. If I hadn’t been having that MRI for my IBS, then I likely would still not know the tumor was there. I had no symptoms, and I couldn’t feel it. Since it was a test ordered by my GI doctor, she was the one who ordered further testing, which included more MRIs, ultrasounds, and a biopsy. After the biopsy confirmed it was a nerve tumor, her recommendation was to just leave it alone and keep an eye on it until I started having symptoms. My mom and I were uneasy about this, especially once we started doing our own research about the type of tumor. Typically, when symptoms start to arise, the tumor has already caused significant, and sometimes irreversible, damage. We decided to meet the “Schwannoma expert” in Boston, who ultimately helped us make the decision to remove it.
Being a fitness professional and active adult, I could not afford to have nerve or blood vessel damage in my leg.
Lesson #2: Always seek specialists’ opinions
From January – November of last year, I had:
*MRI Endoscopy (tumor was discovered) – ordered by GI doc
*MRI of the tumor – ordered by GI doc
*Ultrasound of tumor – ordered by GI doc
*Ultrasound #2, because the first one wasn’t done correctly – ordered by GI doc
*Soft-tissue biopsy via needle (tumor was officially diagnosed) – ordered by GI doc
*EMG Test – ordered by neurosurgeon
*Muscle strength test via needle – ordered by neurosurgeon
*CAT Scan of the tumor – ordered by vascular surgeon
*Countless blood labs throughout the year – ordered by everyone
It wasn’t until the CAT scan was ordered by the vascular surgeon that we realized the tumor was compressing my femoral vein. The CAT scan was the LAST test that I had. In November. 11 months after the tumor had first been discovered. ELEVEN MONTHS. It wasn’t until a vascular specialist looked at my imaging that this was discovered. I naively thought that all doctors would know how to read reports and would pick up on something that wasn’t right. Nope. My GI doctor (someone who specializes in the digestive system) did not see that my vein was compressed. The neurosurgeon, who said my EMG and muscle test was “near perfect” did not see the compression. It was a vascular issue and the vascular surgeon noticed it. My mom always says you need the right people looking at things….I never fully understood that until now.
Lesson #3: Understand your insurance
I’m not going to dive too deeply into this one, but make sure you understand what your insurance covers, and make sure to get all the right letters and referrals if you need them. Health insurance is something that makes zero sense to me, so this was really confusing (and still is). It’s no secret that the insurance companies tend to be assholes about this stuff, so fight for what you know is right, ask a lot of questions, and triple check that all your forms are filled out correctly.
Lesson #4: Ask a million questions (and write them down so you don’t forget)
I prefer to be blissfully unaware of nitty gritty details when it comes to medical stuff. I really hate blood and needles, I get freaked out really easily, and I tend to faint a lot. So I don’t usually ask more questions than I think I need to know. Luckily I had my mom with me at pretty much every appointment, so she helped speak for me when I was too scared or didn’t know what to ask. Unfortunately, a lot of the answers were “we won’t know until we get in there”. That’s not altogether reassuring. But we asked a ton of questions during my pre-op testing a week before surgery, and a ton more the morning of surgery. She helped me write a list of questions for when the surgeons came to check on me in the hospital the next day after surgery. We asked questions at every follow-up appointment I had, bringing little pads of paper with us every time to take notes and make sure our questions got answered. Don’t ever wonder about something. Speak up and ask.
Lesson #5: Speak up if something isn’t right
When I started having pain in my leg 2 weeks after surgery, I was sent to have a vascular ultrasound because they thought I might have a blood clot. At this point in the recovery process, all I had covering my incision were 4 steri strips. It was basically still an open wound, and still hurt when touched. The ultrasound tech prepped me and then squirted the ultrasound gel ALL OVER my incision. I didn’t say anything, but it my head I was thinking “is that stuff sterile? My wound is still open…” I think my mom might have said something to her, but her response was something like “well I need to look there”. She started doing the ultrasound, bringing the machine closer and closer to my incision until she was right over it, pressing down on it. It hurt!! I kind of whimpered, and she asked if I was in pain. I told her I was, so she stopped going directly over it. She had me wipe the gel off it after she was done, and said to just make sure I showered that night to wash the rest off. Two days later I was in the emergency room with an infected incision.
We’re not sure if the infection was only caused by the ultrasound gel going over my open wound, but it probably didn’t help. Two weeks later when I went back for a follow-up ultrasound, I asked for a clear covering to put over the incision during the ultrasound. Lesson learned.
Lesson #6: Disconnect, step back, and let yourself heal
I’m used to being very busy all of the time. I knew that I needed to give my body time to heal, but it was hard for me to lay around doing nothing all day. I was anxiously refreshing my email, texting my co-worker to make sure everything was running smoothly in my absence at work, checking in with clients….I was having a hard time stepping away from work. But I had to. I had to trust that they could survive without me for a few weeks, and that everything was fine (I’m not being vain here – I’m the manager of the gym). I had to trust that my clients would come in on their own and do the workouts I had prepared for them before I left. I had to trust that reports would get written and emails would get answered. I had to disconnect, which ended up being a lot harder for me than I expected. I also had to understand that I was NOT being lazy. It’s important to let your body heal for as long as it needs to. Even when I started feeling better, I knew I had to wait. It’s better to be safe than sorry – I didn’t want to come back too soon and do more damage and be out for even longer.
Lesson #7: It’s okay to ask for (and accept) help
Another thing that was a hard adjustment for me was that I really couldn’t do anything on my own, at least for the first two or so weeks. My mom helped me into and out of bed, helped me get dressed, put my socks and shoes on me, helped me shower, helped me when I needed to go to the bathroom, cooked for me, and helped me manage my pain. In the hospital, I needed help anytime I wanted to get out of bed. As a 28-year old, strong independent woman, this was weird for me. Even after my pain had mostly subsided, I had to keep reminding myself that I was NOT fully healed yet, even if I felt ok. I couldn’t put my socks or shoes on, because I couldn’t bend over or flex at my hip, until week 4. I had to accept help, because I couldn’t function on my own. This is also why I chose to recover at my parents’ house in Framingham rather than in my apartment in Boston. My mom could be with me 24/7, whereas I would be alone in Boston for most of the day when Tim was at work. I had to come to terms with asking for help for the simplest things that I was used to doing for myself every day.
Lesson #8: Having knowledge about the human body is both a blessing and a curse
I’m an exercise physiologist and my mom is a physical therapist. I think we shocked the doctors more than once when we asked questions and used actual medical terminology (true story: I asked my neurosurgery fellow if I could do vastus lateralis stretches…he didn’t know what that was. Not his specialty!). I mean, yes, it was a good thing that I had knowledge and they could talk to me about stuff and 9 times out of 10 I knew what they were saying. But this was also a bad thing. It was a bad thing because when they started talked about “worst case scenario” for the surgery, and started throwing out phrases like “blood vessel graft” and “fem-pop”, my mom freaked out. A “normal”, “average” person probably wouldn’t know what those mean, but she did. A fem-pop is a type of graft where they have to remove your entire saphoneus vein and use it to graft the femoral. It involves cutting open pretty much the whole leg, and would have been a much harder recovery. Luckily, I didn’t end up needing one.
Another example is when I was first diagnosed with a blood clot. When I was in college, learning about blood clots freaked me the hell out. They can turn into a very dangerous situation really fast. I know this. I learned about this. So when the nurse told us that I had one, you can bet I was scared out of my mind. Someone who doesn’t know much about blood clots would be ignorant to the severity of the situation, but not me. It’s the reason why I was so on-edge for two weeks before we found out I actually wasn’t in any danger at all.
Lesson #9: Listen to your body
This is a big one. I like to think I’m pretty in-tune with my body, but it took me a few days to realize that a weird pain I was feeling was something to worry about. At first I just thought I pulled a muscle in my leg, but when it didn’t go away I finally spoke up. My mom’s mind immediately went to a blood clot or DVT (deep vein thrombosis – dangerous). She didn’t voice this to me because she didn’t want to scare me. But she was (sort of) right. At first I was diagnosed with a massive blood clot in my great saphoneus vein, but 2 weeks later we found out that the vein had actually been ligated (tied off, shut down manually), so I really wasn’t in any danger at all. When you ligate a vein, you expect it to clot and inflame, because the blood continues to flow through it before realizing it has nowhere to go. Eventually it will find other routes to travel and the vein shuts down. Like I said, we didn’t find this out until two weeks after the initial diagnosis. When I got the original diagnosis, everyone kept saying “if you have chest pain or shortness of breath, call 911 immediately”. Well, as someone who can listen to a story about someone else breaking their leg and suddenly get leg pain, this was hard for me. I thought I was going to have a heart attack or PE every second of every day for 2 weeks. When I have anxiety attacks, they present as chest tightening and hyperventilating. Guess what I was having every day for two weeks because I was in such a panic about this? Yup. Anxiety attacks. Every. Day. I had to remind myself daily that this was not the real thing, and that I would surely KNOW if something bad was happening. The most helpful thing anyone said to me during this time was “if you had a problem with your heart, you’d be dead already”….I think he was being funny, but it helped. Thanks Tim! Anyways….the lesson learned in this situation is always listen to your body and know when something feels different, and know when to act on it.
Lesson #10: Never, ever, EVER Google anything
This is self-explanatory. Just don’t do it.
Lesson #11: Being “young” and “healthy” doesn’t automatically prevent you from complications
I think the most annoying thing that I kept hearing over and over again from doctors, surgeons, nurses, etc. was that because I was SO YOUNG and SO HEALTHY this surgery would be a breeze. It was freaking surgery. As my anesthesiologist said, “the only easy surgery is when it’s happening to someone else” (she got it). I took these comments with a grain of salt. I conditioned myself to thinking that I would be fine, but not because of my age. I’d be fine because I was knowledgeable about my body and I took good care of it. For months before the surgery I worked out hard to make sure I was in good shape going into it. But that doesn’t mean I was expecting it to be a breeze. I knew it would be hard, but my doctors seemed to think it wouldn’t be. This was the reason we were given when we asked why I wasn’t started on blood thinners as a precaution right away following surgery. “Well, she’s young so…” It’s not a valid reason. Medical complications do not discriminate. Any person at any age can get seriously ill. People healthier than me get sick and hurt all the time. I was over hearing that phrase. Just because I’m young and otherwise healthy, doesn’t mean I don’t deserve the same care as someone who isn’t, and I should have spoken up and said that.
Lesson #12: Always be grateful for what you have
There are many, many things I am grateful for in my life, this surgery and recovery process only intensified those feelings. I’m grateful that this was temporary, and I am an otherwise healthy adult woman. I’m grateful that I am a strong woman, and that I didn’t lose much muscle function at all. I’m grateful that I am independent again. I’m grateful for my mom, and how much she was able to take care of me. I’m grateful for my dad who helped take care of me as well, and is helping me figure out all my medical bills that have come from this. I’m grateful for my sister and brother for being there for me, and visiting me in the hospital. I’m grateful for Tim, who stayed in the hospital with my mom during the surgery, and came to visit me in Framingham every weekend (and provided leg massages). I’m grateful for all my family and friends who came to visit, and everyone who checked in with me and made sure I was doing ok. I wasn’t really telling many people about this surgery, but once it was over I was blown away with the support I got from my friends. It really meant a lot to me, especially that so many people came out to brunch to celebrate my birthday with me. I’m grateful for my surgeons and the nurses who took such good care of me. I’m grateful to have a job that allowed me to take medical leave, and for the support from my boss and co-worker. But most of all, I’m grateful that this is over, and I can finally work on piecing my life back together, getting stronger, and putting this behind me.
I now feel like I can sympathize a lot more with people who are sick, or have serious health issues. I took a walk in their shoes for a few weeks, and it made me appreciate what I have so much more. I will never take my health for granted ever again. When I have a client with low muscle function, who has a hard time with basic daily activities, I’ll be able to understand better. I couldn’t get out of bed on my own. I get it now…it’s scary and you feel trapped. I’ll be able to better explain the purpose of strengthening the core and the legs and the arms, so they don’t end up in that situation for the rest of their life. I think this whole experience not only made me a better fitness professional, but also a better human being.
To everyone that was there for me during this time, I hope you know I will always be there for you too (but I hope you never have to go through something like this).
Now that surgery is over and I am basically 100% healed, the hard part of building my strength back up begins. But I know that I will end up stronger because of this, and I’m ready to work hard to get there.
If you have any questions about Schwannomas or my personal experience, leave them below and I’ll be happy to answer them as best I can!
Thank you again for all the support ❤