My Schwannoma Story

This is a long post, so buckle up! If you follow my coaching Instagram page, you’ll know that for the past year, I’ve had a ton of doctor’s appointments and tests done. You’ll also already know why I was having them and what they were for. I was diagnosed, completed accidentally, with a schwannoma. A schwannoma is a benign tumor that can arise from any nerve in the body, but tends to favor certain nerves located in the head and neck, as well as nerves that are involved in flexing the upper and lower extremities. They are generally non-aggressive, and arise from the nerve sheath, which is the membrane that covers and provides insulation to the nerve cells. The cause is unknown. Neurological problems usually don’t occur unless the tumor involves a major motor or sensory nerve, or if the nerve is compressed by the tumor. Mine is located in my left groin, near (maybe even arising from) my femoral artery. Schwannomas are extremely rare, but curable and should not recur after being removed.

Like I mentioned, this was an accidental finding in a completely routine MRI for my IBS. However, things that have been going on for years….including my first-ever MRI for IBS, show that this has actually been in my body for a long time. The purpose of this blog is to lay out the timeline of this whole saga, and to explain how this has consumed my life for the past year. I do plan to document my recovery as well, both through blog posts and on my fitness Instagram page.

So, the story begins:

**Preface: I am a huge baby when it comes to doctors and medical procedures. I faint when I have my blood taken or get shots, talking about tests and surgery makes me queasy, I’ve blacked out during many doctor’s appointments, I’ve had full-blown panic attacks over having procedures done. I’ve been poked and prodded all year and still get this way. You can imagine what kind of stress that puts me under-just something to keep in mind as you are reading.**

October 29, 2014: I woke up with a stabbing pain in my abdomen, on the lower left side. I immediately freaked out and thought my appendix was bursting (never mind the fact that the appendix is on the RIGHT side). Tim and I had only been dating for about 6 weeks at this point, but he was in between jobs and took me straight to my doctor. They ordered an MRI Endoscopy for later that day. The results of that showed that I had some cysts on my ovaries, and that one of them had burst (this was the stabbing pain I had felt). They also noted some inflammation in my intestines, and said something about a possible hernia. They did notice a small, 2mm mass in my left groin, but felt it wasn’t significant enough to report to me. It was written in the report, buried at the bottom.

Between October 2014 and January 2018, I had a lot of stomach issues, which I’ve touched on in the past but aren’t really relevant to this story. I was diagnosed with IBS, and it turns out I did not have a hernia like they thought.

Three things that will be relevant to this story that I started to notice during this time:

-Sometime in 2016, I noticed that I had a blood vessel that was very prominent in my left inner thigh. When I say prominent, I mean I could run my hand along my inner thigh and feel it protruding. It was also very visible, right under the surface of my skin. It was really only super, super noticeable after a lower body workout. I spoke to my PCP, my GI doctor, and my chiropractor about it. They all brushed it off, saying that if  it didn’t cause pain, it was most likely nothing: “It’s just a shallow vein”.

-I don’t remember exactly when I noticed this, but I wear knee sleeves when I squat and I started to notice that my left one was way tighter than the right, and way harder to get on. I just figured my leg was getting more muscular and didn’t think much of it.

-I started to notice that it would take my left leg twice as long to recover from a lower body workout, and that my hip flexors seemed to get unusually sore, especially after squats.

January 18, 2018: My GI doctor ordered another MRI Endoscopy because my stomach issues had flared up again. For those that don’t know, MRI Endoscopies are when you have to drink two bottles of disgusting stuff that clears out your intestines and colon. Then, you are hooked up to an IV so that they can inject dye into you during the MRI. It sucks. It’s uncomfortable, and you can’t eat for like 10 hours (6 hours before the test, then two hours after….the test itself takes about 2 hours between drinking the stuff and the actual MRI-this may not seem like a big deal but it was to me LOL). This time, they thought the mass in my left groin was noteworthy. It was now 5mm. When she called me to give me the results of the MRI, she said: “your stomach looks good, but do you have any hip pain?” No….I didn’t have any hip pain. She told me about how they noticed a small mass in my hip, and that she wanted to work it up “just to make sure it’s nothing to worry about”.

February 8, 2018: I had a second MRI, this time on that specific area in my hip. I didn’t have to drink anything this time, but I did have an IV for injecting dye again. They were able to get better visuals of it, but still couldn’t really tell what it was. Originally, they thought it might have been just a knot of blood vessels. I had a follow-up with my GI doctor, who had been ordering all these tests, on February 20. Since they still couldn’t really tell what it was, she ordered an ultrasound on the area.

**It’s important to note that I had absolutely no symptoms of anything in that area. I could not feel this mass. I had no pain. I was not in any discomfort. Had this not been found on my first MRI, I wouldn’t know it existed**

March 2, 2018 (day before my 28th birthday): I went in for the ultrasound. So far, this was the easiest test-no needles required. The ultrasound tech talked to me through the whole thing, then at the end said that it looked like it was just a lymph node that was inflamed, for some reason. He said it was nothing to worry about, and it would eventually go down. I left there feeling really happy about that news.

March 5, 2018: Later in the day after my first ultrasound on the 2nd, my doctor called and said it wasn’t done correctly, and that I needed to go back in for another one. She said it definitely was NOT a lymph node, and the tech should not have made that assumption, much less told me. So I went back for another one, and this time he had me moving my leg around, flexing and relaxing my muscles, and cutting off blood flow. This time they were definitely looking for something relating to the blood vessels. He didn’t tell me anything before I left this time around. I got a call from my doctor about a week later: “We still can’t tell what it is, but then next step is that we need to do a biopsy.” On the written report that came in the mail a few days later, she wrote that she was following tumor protocol.

At this point, I was sufficiently scared and freaked out. Biopsy usually means tumor or cancer, right? I started getting really nervous, thinking I might have cancer or a tumor or something really bad. Not to mention, I now had to go through minor surgery-the biopsy.

March 23, 2018: I thought it was time to loop my PCP in. Thus far, all tests were being ordered by my GI doctor, since she was the one who originally noticed the mass in my MRI Endoscopy. This was a little complicated, because my GI is at Beth Israel, and my PCP is at Boston Medical. However, I learned that they are actually old friends, so it all worked out. She told me to continue having all tests done at BIDMC, since that’s where they started, and urged me to go forward with the biopsy.

April 6, 2018: Biopsy day. I was told to fast for 12 hours, which I assumed meant I would be put under for this. Which is what I wanted to happen-believe me, I did NOT want to be awake for this. When I arrived with my mom, I was told that I would be awake….WHAT?! I started crying, my heart was racing, I was having a full-blown panic attack, right there in the waiting room. The nurse asked if I would prefer to be under anesthesia, if I wanted something for anxiety, to calm me down…to which I replied, “YES”. She walked away, and it took a few minutes for me to calm down, with the help of my mom and some deep breathing. Then, another nurse came out to take me back. I assumed she knew I was being put under, but as she started to explain the procedure, it became clear that the conversation I had just had with the other nurse had not been communicated to this one. But, I let her finish. She said my leg would be completely numb, the only thing I would feel would be the shot they used to make it numb. After that, I wouldn’t feel anything. “Ok, I can do this”, I thought. At that point, I just wanted it to be over with! Then, the first nurse came in and spoke to both me and the second nurse about the process for going under….I needed to have bloodwork done first, then it would probably be about 5 hours in the hospital. I took a deep breath and said, “I think I’m just going to do it without. She just explained everything to me, and I think I would rather just get it over with. I’m sorry for causing a scene earlier”. They were more than ok with my choice, and super nice about everything, telling me not to worry about that and that they just wanted me to be comfortable. The first nurse left, and then two doctors came in to start the procedure. I won’t get into the nitty gritty details, but it was rough. The second nurse had been correct- I didn’t feel anything after my leg was numb, but the shot that made it numb was a doozy. I was laying down, but I still started blacking out at one point. Everyone was so nice-they talked to me throughout the entire procedure, asking me questions, talking about my upcoming vacation…basically distracting me from the fact that there was a needle inside of me. It was over within a half hour. I had taken the whole day off work, so my mom and I got something to eat and I went home to rest and stay off that leg (it was pretty sore, especially after the anesthesia started to wear off).

April 13, 2018: My doctor called with the results from the biopsy. It was the day before I was leaving for Alaska. I almost didn’t answer because if it was bad news, I didn’t want it to ruin my vacation. But, I picked up the phone and took a deep breath, bracing myself for the worst. She explained that it was a schwannoma, which is a tumor of the nerve sheath. Mine was benign-THANK GOD-so she didn’t think that I needed to do anything about it for now. “Go enjoy your vacation-we’ll do a check-in when you get back” she said.

Between April and August I had various doctor’s appointments, both with my GI and my PCP.  I love my GI doctor, but she was adamant that this was not an issue for me and that we didn’t have to do anything except keep an eye on it. I wasn’t sure about that. I wanted to have it removed, and after my mom did some research herself, my mind was made up.

Around August, my mom and I had a meeting with my PCP. My mom had discovered that while schwannomas are benign 99% of the time, since they are tumors of the nerve sheath, they can cause a lot of issues down the road. In fact, many people don’t even know they have one until it’s too late…..these types of tumors can cause major nerve damage. To the point where I could lose all nerve action in my leg entirely. My GI doctor didn’t really understand this-I do not blame her AT ALL….she’s a stomach specialist! How was she supposed to know about something like this? I was grateful to her for finding it in the first place, and directing me to further testing. But now it was time to loop in my PCP and get her take on it. She agreed that I should at least talk to some surgeons or neuro specialists. She directed me to the tumor department at Dana Faber, which wasn’t much help because there is not a schwannoma specialist there. In fact, there’s only one in Boston, and he was at BIDMC. Luckily, my GI knew him and was able to get me in to see him.

October 11, 2018: I met with Dr. Ajith Thomas, a neurosurgeon who specializes in nerve tumors like mine. He explained a little bit more about this type of tumor-it’s extremely rare, they don’t really know what causes them, and he’s not going to know how “bad” it is until he gets in there. He said I should definitely have it removed, for the reasons my mom discovered-if we leave it, I might get severe nerve damage. As he explained the surgical procedure to me, I started getting really nervous and scared. I don’t think I fully realized, until that moment, how major this surgery was. I’d be out of work for 4-6 weeks, and recovery was going to be hard-I wouldn’t be able to lift again until maybe 8 weeks post-op. I started having second thoughts about this. Before leaving his office, he ordered an EMG test to check for any existing nerve damage, and an appointment with a vascular surgeon. Because of the type of tumor and the area where it is, he said he always does these surgeries with a vascular surgeon.

November 8, 2018: The EMG test. I am an exercise physiologist-we did EMG testing in my labs in school, so I figured I was prepared for this. Famous last words! These machines were MUCH more powerful than our little college ones. I was not prepared for how uncomfortable this was going to be. This test had 2 parts. The first part involved them sending electric shocks down my legs, first on the left then the right to compare. It felt like static electricity running down my leg. Every time they sent a shock down my leg, it would twitch (I took this as a good sign). The shocks got more and more powerful-I had to keep stopping them to rest. Eventually that part was over and part 2 began. Part 2 was testing my muscle strength in my left quad, and to do that, they had to stick a needle in my muscle. You already know my track record with needles. While the needle was in there, I was told to flex my quad AS HARD AS A COULD. The harder I flexed, the more it hurt. I was lying there, trying to prove that my leg is strong, while tears flowed from my eyes. Two minutes of this and it was over. They had me lay there for about 10 minutes with an ice pack on my leg before I could leave. The results of this showed no nerve damage and no muscle weakness. YES!!

November 21, 2018: Before I could meet with the vascular surgeon, I needed to have a CAT scan of the vessels in that area. This was another test that needed an IV-ugh. I was so sick of being stuck with needles!! This was one of the shortest tests I had-only about 10 minutes. The dye they use for these types of scans makes you feel extremely warm and like you just peed your pants (lovely). After the dye goes through you, you get really, really cold. The dye goes straight into the blood vessels and helps to highlight specific areas that were being scanned. I was there for about an hour, then headed home to enjoy Thanksgiving.

November 28, 2018: Meeting with the vascular surgeon, Dr. Marc Schermerhorn. He had the results of my CAT scan from the week before. AS he pulled them up on the computer, I saw the tumor for the first time. It looked HUGE. How could that be only 5mm?! Well, that day I learned that it had actually grown a bit since January, and it was compressing my femoral artery. “Your artery is as flat as a pancake” he said, in what I’m sure is medically-accurate terminology. But he was right, I could see it right there on the scan. My artery was super compressed! He said he was surprised I wasn’t having any symptoms. “Well…..” I said. I told him about the shallow vein in my leg. I told him about my knee sleeves getting tight. I told him that I sometimes feel like it takes my left leg longer to recover after a workout. Yup-everything suddenly fell into place. That vein is more visible and shallow because it’s probably working twice as hard to pump blood through that compressed area. I probably have some swelling of the leg-not enough to notice it just by looking at me, but enough to cause my sleeve to be too tight. Since blood flow is compromised, I’m taking longer to recover. Everything suddenly made sense, and at that moment, I could not WAIT to schedule surgery and get this thing out of me.

Important to note: I had SO MANY SCANS, met with 3 doctors before the vascular surgeon, and NONE of them ever mentioned nerve compression. My mom always says it’s important to have the right doctors looking at reports, and for the first time, I truly understood what she meant. Then neurosurgeon didn’t know to look for compression. My GI certainly didn’t. But it was the first thing the vascular surgeon looked for and noticed.

So, now it was time to schedule surgery. I was hoping for sometime in mid-January, but the first available for both surgeons was February 4, 2019.

January 28, 2019: Pre-op testing. This was basically just for me to talk with the anesthesiologist, a nurse, and have some labs done in preparation for surgery. I found out a little more about the procedure….personally, I prefer to be blissfully ignorant about what’s going to happen to me, but it’s protocol that they have to inform me about everything. The more the anesthesiologist talked, the more “real” it became. Holy. Shit. “It could take anywhere from 2 hours to 7 hours”. “We’ll keep you out for as long as they need us to”. “You may need an arterial line as well as your IV. We’re not sure yet”. “You will have a breathing tube”. “You will definitely be in the hospital overnight, but plan for 2 nights just in case”. I left this appointment sufficiently more freaked out and nervous than I had been since I made the appointment for surgery.

I trust that I am in good hands with the surgeons, but they don’t really know how “bad” it is until they open me up. Depending on how the surgery goes will depend on the recovery. I am already planning to be out of work for at least 4 weeks, but I’m hoping to go back sooner. I’ve been working hard to prepare my body for this. I figure, the better shape I’m in, the easier the recovery will be (hopefully). I’m young, I’m otherwise healthy, so I’m hoping it won’t be too bad. I’ve been told I’ll need to start walking a few hours after surgery, because the biggest risk involved with this type of surgery is blood clots. Moving will help prevent this. I’m planning to stay in Framingham with my parents for a few weeks, and already told my mom I want to go on daily walks.

If I am being completely honest with you guys, the thing I am most scared of is the recovery. Surgery is whatever. It’s necessary. I can understand that. But since the recovery is a big unknown at this point, that’s what’s freaking me out. I’m a fitness professional, and I lead a pretty active lifestyle. This is going to be a major change for me-not being able to lift for maybe 8 weeks, having to start back at the bottom….just when I was getting so strong! I’m scared that my leg won’t be the same after this. I’m scared that something will go wrong and I’ll end up with nerve damage anyways. I’m scared that I’ll gain 1000000 pounds after surgery. I’m scared that I will lose all my muscle. I’m scared that I’ll never build back up, that I’ll never be able to squat 215+ again or deadlift 250+ again. And yes, I do know how irrational that all sounds.

When I start falling deep into a hole of worry, I have to stop myself and start thinking rationally. While I know that I will likely lose some muscle during recovery, I also know that I will be able to build it back, no matter how long it takes. I know that maybe, giving my body a break is a good thing. Maybe this is what I need. I haven’t taken a break this long EVER since I started lifting.

I’ve mentioned before that this year was the first time I’ve experienced real anxiety. It’s the first time I’ve had real panic attacks. This year was stressful at work to begin with, but then adding this on top of that definitely put me over the edge. I don’t feel like myself anymore. I spend a lot of my “free” time on the couch because I feel so emotionally drained. I’ve never really had mental health issues in the past, but this whole situation brought them to the surface. I know that having this tumor and this surgery looming over me is the root cause of everything. My IBS has been flared up for months, I’ve been gaining weight, I’m barely sleeping…..but I am hopeful that there’s a light at the end of the tunnel. I do feel like giving myself the time to heal and time away from work will be enormously helpful. And I do have help if I need it, both through my strong support system of family and friends, and through my doctors.

The only thing I know for certain, is that I will come out of this stronger, healthier, and with much less stress and anxiety. I can’t wait to get back in the gym. I can’t wait to get back into nature and go hiking. I can’t wait for this all to be OVER!

If you have any to spare, send some good vibes my way on the morning of February 4!

 

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