It might be a minute until I publish again because I’m about to have neurosurgery.

And I wanted to catch you up, but also, I have some things to say…

If you’re just here for the catch up, read “the quick and dirty” section, but if you want to Get. Into. It. All., stick with me through “the long version.”

The Quick & Dirty (TLDR)

I am about to have neurosurgery to remove a large tumor compressing my spinal cord, which has been causing me intense pain and other concerning symptoms.

I have a significant history of blood clots causing a lot of risk and taking as many precautions as I can.

Needless to say, this is very scary and my recovery will be a minimum of three months.

The Long Version

If you want to dig deeper into what I am going through and why I feel compelled to share a lot of my health story with you, keep reading.

But, grab a snack and a drink first, because I am rarely concise.  Lol.

And there are many reasons I want to share, including a book I’ve been working on, but the biggest reason is that there is a very real and significant story to be told. 

One that goes beyond my personal journey.  One that includes many voices.

But, I’ll get to that.

Why Share My Story

First, it’s cathartic.  It’s feels freeing to share the hardest stuff. 

For example, I shared this post about my mental health journey back in 2021.

 

 

 

 

 

 

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A post shared by Alexa Webb (@alexawebbfashion)

For me, sharing was not only about helping others, but it was also about being open about who I am and my struggles.  To my surprise, I received an overwhelming amount of positive feedback.  People felt seen and heard.  And I felt seen and heard. 

There was a celebration of sharing in the comments and my DMs.

In fact, the more that I shared on Instagram, the more people shared with me.

Discrimination in Medicine

I shared a bit more of my story last year, when I was blown off by the ER and sent home with a diagnosis of “anxiety.”

And later, I shared my horrific experience getting surgical consultations for my spinal tumor.

 

 

 

 

 

 

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A post shared by Alexa Webb (@alexawebbfashion)

Over the years, as I have shared the weight discrimination, bias, and downright abuse that I have endured dealing with the U.S. healthcare system and the field of medicine, something significant happened…

Many of you.  MANY, too many, sent me DMs of your stories of discrimination, bias, and abuse suffered at the hands of the very people meant to help you, or at the bare minimum, meant to “do no harm.”

My Mission

So, when I am on the other side of this thing, it will be my mission to tell my story and your stories.  OUR STORIES.

Because no one deserves to be treated with anything less that respect, dignity, and the most basic of human decency, especially in a field meant to help. 

And to be clear, this is not about merely having one’s feelings hurt.  No, this is about systemic mistreatment that results in very real health disparities, permanent preventable damage, and premature preventable deaths. 

I will share sources when I have more time, but these are very real measurable health outcomes studied and published in peer-reviewed journal articles.

So this is a very big deal and a fight worth fighting.  And I think my voice has a place in the conversation, which at this time, quite frankly, is limited to small advocate circles and researchers. 

I used to conduct clinical research for a living and I have a decent grasp of public health and psychology research.  And damn if I don’t love pointing out the bias in things! 

So I believe my education, experience, passion, and platform can all be used to address this issue- once I’ve recovered.

In the meantime, for some resources, check out Health at Every Size (HAES), HAES directory of healthcare providers, Christy Harrison, and Ragen Chastain.

More of My Story

Now back to what I’m currently facing… In case you’re new here or you missed my 2017 post about my first pulmonary embolism, you may want to start there.

As I mentioned in my “My Favorites: Chronic Pain & Illness Edition” post, I have a lot of health problems… that have lead to more problems, that have led to treatments, that have lead to more problems, and so on.

Between the ages of 25 – 45, I’ve had four “episodes” of blood clots.  I have hemorrhaged, had life-threatening anemia requiring blood transfusions, surgeries, and about 50+ days in a hospital bed, cumulatively.  It’s a lot.  

And now…

I have a large intradural extramedullary spinal tumor that compressing my spinal cord.  A fancy way to say that I have a tumor inside my spinal canal, actually it’s taking up the entire canal.  And this mass is inside the sheath that houses my spinal cord but not actually inside my spinal cord, that is one small positive thing I can say. It would be worse.  And trust, it can always be worse.

The tumor is causing significant pain, leg weakness, numbness, and intermittent struggles with bladder control.  Fortunately, it’s unlikely to be cancer.  But, needless to say, it needs to come out ASAP.  The longer it stays, the more likely my symptoms will become permanent.

And as if having someone saw through your bone to then cut open your dura (which will be happening to me tomorrow) and then cut out a tumor isn’t scary enough, I also should mention that my significant history of blood clots, severely complicates things.

Blood Clots & Neurosurgery

Surgery of any type is always riskier for me because one cannot take anticoagulants (blood thinners) during surgery.  And surgery in and of itself increases the risk of blood clots.

But, turns out spinal/neurosurgery is actually even riskier because the risk of bleeding into the spine, which can cause permanent paralysis.  So, two things will be different when it comes to me having neurosurgery.

First, the time off of anticoagulants is much longer.  My last surgery only required me to be completely off of anticoagulants for approximately 24 hours.  Not that long, but terrifying none the less.  Remind me to tell you about my panic in the middle of the night when my blood was far too “thick” and I was out of a short-acting anticoagulant.  I sincerely thought I might be dead by the time my friend returned from the 24-hour pharmacy.  My point is, shit can get real, real quick.

But, for this spinal tumor neurosurgery, I have to be off of all anticoagulants for a full week before and two weeks following.  So, a total of three weeks without anticoagulants.  As I have mentioned, the last time I was off of blood thinners for this long was 2007 and the result was a pulmonary embolism and 14-day hospital stay.  I’ll have to tell you that story too. Like I said, there will be a book.

So, needless to say, this is incredibly dangerous.  Straight up, it’s deadly.  And unfortunately the only precaution that can lessen my risk, is an Inferior Vena Cava (IVC) Filter. 

Fun with Filters

An Inferior Vena Cava (IVC) Filter looks like a miniature umbrella without fabric turned upside down.  Essentially this metal “skeleton” of an umbrella is meant to catch clots as they travel from the legs, preventing them from traveling to the lungs.

Why do I say “unfortunately?” 

Because I had an IVC filter placed back in 2007.  It was recalled by the FDA.  Turns out that not only did my filter not do it’s job (prevent pulmonary embolism), but it was killing and maiming people.  A lot of people.

One thing I highly discourage if you’re ever faced with a medication or medical device that has been recalled is going to the FDA website and reading about the cases that led to it’s recall.

Yeah, I did that.  I read about the many people whose filters broke and set shards of metal throughout their bodies leading to paralysis, lung collapse, open heart surgery, and sudden death.

It Was Like a Bomb

So, I had this bomb inside me waiting to “go off” and do God knows what at any moment.  And I couldn’t get anyone to take it out because if you leave an IVC filter in for more than 6 months, it is not recommended to try to remove it.  Only, no one had ever told me that part!

Mine had been in my body for nearly 15 years! 

So when I had a CT scan to look at it, turns out it was tilted, broken, had perforated my vein with two metal struts, one pushing against my aorta, and was ensnared with scar tissue.

Thankfully, in 2021, I found an interventional radiologist willing to cut it out.  It was such an “event” that despite being a world-renowned hospital, they had to borrow “lasers” from another department to safely do so.  That was also quite a harrowing story I need to tell.  Talk about PTSD!  And sadly, two metal pieces of that filter had to be left inside my body.  Here’s to hoping they don’t migrate!

A Temporary Measure

So, needless to say, when I heard my best course of action in preparation for neurosurgery was to get another IVC filter, my heart sank.  And my anxiety spiked.  Not again!  I swore never again!

And yet here we are.  As I type this, my subclavian vein has a bandage over it from the newly placed filter.  Sigh.

But, I will promptly have this bad boy removed because I am not playing chicken with another implanted medical device.  I have up to a year to have it safely removed.

Up-to-Date

I actually have a lot more color to add to this.  Crazy stories, some colorful and fun, others terrifying.  But, preparing for surgery is a lot.  Like a full-time job, on top of my full-time job!

But, I wanted to get something out to help everyone understand all that I am going through right now.

So, if you’re patient with me, I’ll be back soon to tell you more about this journey and some of the aforementioned tales.  I’m telling you, they’re good!  

In the meantime, if you are just dying to read more of my personal stories, check out this post and that post if you haven’t already.

And lastly, I will be giving the majority of my updates in my Instagram Stories and some in my Instagram posts.  So, please follow me there if you don’t already.

Thanks for reading and I love you all!