Saturday, April 11, 2015

Schwannomas, a Story of Discounted Tumors and Misunderstood Pain

'Well at least it wasn't cancer!'

'But your tumor was benign, right?'

We've all heard these things said before.  To be quite honest, they are usually said by very well meaning people who try to be encouraging.  (I have also heard it said by doctors who have a more specific reason, wanting to clearly make the medical distinction of what a Schwannoma is, versus cancer).

Certain things have become quite clear to me, after having worked on Schwannoma issues and survived one myself - and that is, that Schwannomas are frequently discounted.  And by that I mean they are not taken as seriously as other tumors or conditions.  I have frequently talked to people on the Schwannoma Survivors page who mention having difficulty helping family and loved ones understand just what they are going through.  The truth is, these tumors can be very, very bad.  They can impact your life and bend every part of your daily experience around the pain and neurological deficits that they create.  So why is it that people discount Schwannomas so frequently?

Part of the problem is the simple fact that they are not very well known.  Go pick ten people off the street and ask them what a Schwannoma is, and there is a good chance that you will run 0 for 10, and find absolutely nobody who knows what they are.  So just making these tumors better known is a paramount goal that we should all try to aspire to.  We have to share our stories, because raising awareness for rare diseases, conditions, and tumors - is always a good thing.  And we will never suffer for our becoming wiser in that regard.

But the ugly truth still prevails...most people have no idea what a Schwannoma is.  So it follows that they will not likely have any kind of mental architecture for coming up with a way to encourage and support someone who has a Schwannoma.  If we mention Cancer, Diabetes, Heart Disease, etc - there is immediately something that people can grasp and there are even entire support networks there to inform and assist families.  Very little, to almost none of that - exists for Schwannoma Survivors.  So, strange as it may seem - it is up to the person with the Schwannoma to often try educate others or help people understand what these insidious tumors can do.  So as we suffer, we have to explain.  We have to try to share what the reality of our lives is like, and we have to pull that word "Schwannoma" out of the dark and put it up in lights.

Awhile back I was doing more online reading on Schwannomas and I came across a discussion where several people mentioned that they didn't like the word "survivor" being used in association with Schwannomas.  Our page and blog are called "Schwannoma Survivors & Schwannoma Fighters" so I took some time to think about it.  Of course, a person may self-identify any way they wish.  They can call themselves a flying goat headed crocodile zombie if they like! :)  How a person self-identifies is very personal, and they have that right to assert whatever label they wish in a non-harmful manner.  All of this called to mind the first thought I had when I thought about Schwannomas being discounted tumors - and that is, that if we have no mental frame of reference for understanding a Schwannoma, especially on a societal level - it would stand to reason that some people may not understand why some of us prefer to call ourselves 'Survivors'.  (And for some, no amount of suffering is enough to raise to this level.)

The simple truth is this; Schwannomas CAN be that bad.  I have read so many examples of the relentless, grinding misery these tumors can cause - I learned early on not to discount them the way others do.  For example, when more than one person says to me that they were at the point of contemplating ending their lives just to get OUT of the pain caused by Schwannomas, that would make most people to sit up and take notice.  These are usually very normal, well adjusted people who love life - but when they have told me that the pain was so unbearable that they were to the point of even contemplating ending their own lives, then we must understand how serious that is.

When people write me and tell me that they have the condition of Schwannomatosis - and that they have more Schwannomas than a doctor can count in their spinal cord alone, then it is really that serious.  When you hear of them speak of multiple surgeries, and still struggling with pain and neurological deficits in multiple points of their bodies, then you can't cheapen or lighten that story.

When someone has an acoustic neuroma...and they detail the experience of loosing hearing on one side, or having their facial muscles paralyzed.  Having to tape their eyelid shut just to sleep.  Having balance problems, nausea, and most of all - carrying on as the wonderful people they are while presenting to the world a face that has been affected by facial paralysis - then it is that serious.  And this is a tumor that often has to be surgically operated on near the base of the skull, just below or beside the brain.  Most of us with normal faces can't properly contemplate the struggle and the courage that it takes to show themselves to the world, while hearing impaired or deaf on one side, struggling to maintain balance, and still mustering the courage, beauty, and dignity to present themselves to the world.  And these amazing people do it again and again each day.  Yes, these tumors are that serious.

When a person can take a strong, narcotic medication in a desperate attempt to reduce pain - and it does almost nothing to reduce the pain...then yes, they can be that serious.

When people like myself tell their stories of spinal cord Schwannomas - and they talk about lying curled up on the bed in pain, unable to lie down flat at night - and therefore, unable to sleep...the twin effects of sleep deprivation and chronic pain ravaging tired bodies and minds, sometimes for years...

When a person tells you about their Cervical Spinal Schwannoma - which leaves shooting pain and weakness down their arms.  When the weakness and nerve shocks affect everything below their necks...

When a person tells you about the damage done by a particularly bad Lumbar or Sacral Schwannoma which leaves them with a permanently debilitated bowel and bladder...

When a neurosurgeon tells one of our page members that the worst Spinal Cord Schwannomas can feel like "The pain of terminal cancer, without the relief of death," then they are really that serious.  (Don't misunderstand me friends, I do not, in return, seek to cheapen the experience of having cancer.  I too have had multiple family members lost to this scourge of a disease.  Almost all Schwannoma Survivors will emerge from the experience with our lives - however the point about the pain Schwannomas cause is striking, and worth taking note.)

When people have Schwannomas in their arms and legs, and the million small gestures we all take for granted...reaching out to pick up something, lifting a leg, standing up, become acts of pain and grit...

Take it from me, the guy who has read the entire inbox of the Schwannoma Survivors & Schwannoma Fighters page - these tumors can be that serious.  No, not all are serious in that way, or to the same extent - but the simple truth is that they CAN be.  A certain number of people have very successful Schwannoma removals, suffer minimal side affects, and are able to resume a healthy and vigorous life.  And for those folks, if the winds of fortune were kinder to you - then we celebrate that and are delighted that you passed through the storm with minimal damage.

But the argument I make is that if a person with a Schwannoma wishes to call themselves a 'Survivor' then that should be respected.  You do not have to call yourself that, if you wish not to.  But respect it if another person does.

For Schwannoma Survivors we have no charity walks.  We have no telethons.  We have no celebrities advocating our cause.  If we are diagnosed with a Schwannoma, it is an extreme rarity if we will even have any relative, friend, or loved one, who even knows what we, or our doctors, are talking about.  And so it's not a stretch to realize, often to our dismay, that finding others to relate to is not easy - and that is why I created the Schwannoma Survivors page and blog.  And that is why I have continued to be inspired and amazed by the gritty, beautiful, and fascinating people that I have met on the page.

We are people who have been handed a burden that almost no one else understands.  We have often felt that we were walking in the dark.  Slowly, as a result of efforts made in the years since, lights have appeared and illuminated other Schwannoma Survivors - and we can look across the space of the internet and at least take comfort in the fact that we are not alone.  There are still those spaces of darkness, ignorance, misunderstanding - and spaces filled with that giant, often prevailing notion that Schwannomas are discounted tumors.  It will be up to us to light those spaces up and help others understand that these tumors can be extremely serious, and they can have far ranging, lasting affects on innocent people's lives.

We can call ourselves whatever we like...

Myself, I am a proud 'Schwannoma Survivor.'

- Neil

*This blog is dedicated to one amazing anonymous survivor and contributor to the Schwannoma Survivors Facebook page and blog.  You know who you are :)


  1. I had a acoustic Schwannoma removed in 2014. I have seizures, dizziness, daily headaches, and I'm deaf on the left side. My face has almost gone back to normal now after almost two years. I still don't tear or have nasal discharge on left side and my left eye gets tired and twitches. I've been experiencing the nausea and vomiting with increase of migraines recently. I have to go in for an MRI as my doctor said mine can reoccur anywhere in spinal fluid. I hate that my symptoms are discounted by doctors. It's like they say your fixed after brain surgery. I'm still living with the daily side effects. It's nice that you have this blog and I do believe, I'm a survivor!

  2. Thank you for this post. It is so well said, all of it.

  3. Thank you for your words and your effort to share and educate. You have helped me tremendously in my journey