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1) How old were you at the time of
your diagnosis?
It was March
2011, I was 36 years old. My diagnosis was given to me after a biopsy. I had a
"walnut" size growth surgically removed from the nerve sheath of my
spinal cord, in a lower lumbar vertebra. There was a fair amount of certainty
of Schwannomatosis from MRIs, but the doctors, radiologist, and neurosurgeons
would only speculate. It was only after getting in there to really see what was
happening, and the biopsy, that I was officially diagnosed.
2) Do you have any history of
Schwannomas in your family?
Nothing official,
however, it is worth mentioning that my mother was having weird pain and
numbness in her finger from a lump growing in one of her knuckles. She was 50,
and it was 1999. It was surgically removed. The surgeons, and doctors were
baffled, It was biopsied inconclusive, and they told her it was some sort of
weird nerve tumor. Due to other health issues, she's since had a number of
scans that have not revealed or indicated anything further. It was mostly
forgotten about, until my ordeal. She's not had any symptoms, or related issues
since.
3) Where was your Schwannoma
located? And what were the symptoms that
lead to your diagnosis?
The short
version:
The
Schwannoma I had removed was directly on my spinal cord, in a lower lumbar
vertebra. It was pinching off my sciatic nerve, and causing immense and growing
pain in my lower back and down my left leg. It was slowly paralyzing me.
Here is the
long version:
When I was a
teenager, I had weird pains down my legs. I was always told they were growing
pains. I accepted that answer, and was glad I was 6'1". Later, in my late
twenties, I experienced sharp pains shooting through my legs. This wasn't very
frequent. It was usually when trying to fall asleep, but not having my hips in
my favored sleeping position. I accepted this as due to a physically demanding
profession. There were a few lower back issues in my early thirties, but these
were always thought to be work related. Then, one Saturday morning in January
2011, my dog jumped the neighbor’s fence, and was trapped in their back yard. I
climbed the tall wooden fence, and was able to then climb down the other side.
I pushed my dog over the fence, only for her to run off in another direction.
In pursuit, I climbed back up the fence, and jumped to the ground. As I landed,
my back buckled. I figured bed rest the remainder of the weekend would have me
back to work Monday. No luck, Monday I was at my doctor. As common for a back
injury, I was prescribed a few painkillers, and muscle relaxers. By Thursday it
was clear something was very wrong. After some convincing, my doctor sent me to
a small "open MRI", where they took images of my lower back. The
results had my doctor sending me to a different MRI, for images to be done
both, with and without, contrast dye. During this time, things were becoming
much worse for me pain wise. Those results had me summoned into his office to
be told I was now going to be sent back for a full spinal and cranial MRI.
They'd found a "mass", and wanted to know what exactly is going on,
this was nothing to do with an injury from jumping down from a fence.
Nobody likes
to hear about a "mass". My general practitioner said I could call it
whatever I want, a mass, legion, tumor, lump, or growth, it didn't matter.
Without a biopsy, which I was assured was coming, they didn't like assuming
anything. Like anyone else, I was thinking cancer. The full spinal/cranial MRI revealed numerous
"masses", including one on a certain nerve of my brain stem. I was
promptly referred to a local neurosurgeon. The pain in my back, and leg
increased daily. I was put on Dexamethasone to ease swelling until I could get
into surgery, and was on moderately heavy narcotics for the pain. I was slowly
loosing sensation, and strength in my left, and later my right leg. Without
having this schwannoma removed, I would have been paralyzed pretty quickly, as
it was growing very fast after the fence incident. The first MRIs indicated it was
acorn size, but it was walnut size when the surgeon removed it, less than two
months after my initial doctor visit. Keep in mind; this is inside my
vertebrae, on my spinal cord.
The
schwannomas, as they turned out to be, were many. My brain, cervical, thoracic,
and lumbar portions of spinal cord all have schwannomas. The many in my very
lower back are "too many to count".
Also, worth
noting, there are none to be found anywhere else, only my spinal cord, from
brain to bottom.
The third
MRI had the neurosurgeon asking many long probing questions relating to family
medical history, and any "other" weird symptoms of unknown cause. I
was scared, because they seemed truly intrigued, and I was becoming paralyzed.
Sorry for
the length here, but I've come to understand there is no short and simple way
to come to a Schwannomatosis diagnosis. I hope this isn't more than people care
to read. I also hope it helps someone else out there. The not knowing or
understanding was brutal during those first few weeks. It seemed I could find
nothing on the subject, just one description that website after website copy
and pasted from somewhere.
4) Could you describe, in
whatever detail possible, what kind of surgical treatment was performed on your
Schwannoma, and if you would consider it successful? (Or describe what you may
know about the surgery that may yet be performed, if you haven't been operated
on yet)
Let me start
by stating it was successful, because today I can walk. It's been a little over
three years since the surgeries.
After weeks
waiting to get into the operating room, I underwent the surgery to have this
mass biopsied, (and removed if the surgeon felt it would be possible while he
was in there). Prior to the operation I was educated at length on the risks of
bringing a scalpel to my spinal cord, as well as the probabilities of waiting,
and the certainties of doing nothing.
85% was
removed. The biopsy confirmed all schwannoma suspicions. The initial surgery
went off without a hitch. There were monitors hooked up to my head, hands, and
feet, to determine whether motor control nerves were being affected. All
cutting on this mass stopped when nothing more could be removed without
sacrificing motor control, and thus, my mobility. After all, this was primarily
to get some of this mass for a biopsy. I recovered in the hospital for a few
days, and was sent home to return a week later to have my stitches taken out.
The day before I was to have my stitches removed, my spinal cord tore open at
the site of the schwannoma. I was unknowingly leaking "cerebral spinal
fluid" internally. The pain grew fast, and tremendously. Calls to the
doctor were fielded by an assistant believing I was trying to hustle more pain
pills. I was told to go to an emergency room, if it was in fact, as severe as
described. "You have an appointment tomorrow morning" I was told.
Feeling stupid, I simply ate more pills in an attempt to combat the insane
pain. Soon, cerebral spinal fluid (CSF) began gathering all around the entry
site, and later began to seep through the stitches, and lots of it. A friend
found me in a terrible state, and got me to the emergency room as the headache
began. This headache (very much more than an "ache") was
"intracranial hypotension" from my brain settling within my head, no
longer enveloped in the very necessary CSF that protects it from contact with
the skull.
The next
morning there was an emergency surgery to go back in, through the same
incision, and repair the rupture. I was informed that a bit more of my vertebra
was removed, and my spinal cord was now patched even higher. I was made to keep
flat and lie still in the hospital for days, having MRIs to monitor the
progress. The day before I was going to return home, again, my spinal cord tore
open. MRIs, and PhDs suggested, my body was regenerating spinal fluid at too
high a rate, and the pressure was blowing out the patch.
Just like
you may give blood and your body manufactures more, so goes CSF. As long as
you're not losing it at a rate greater than your body can reproduce it,
apparently, it's not a big deal. However, since my body was going overboard in
its production, it was a big deal.
The final
surgery was done. More of the vertebrae removed. This time, a "shunt"
was placed into my spinal cord, a sort of “bleed off valve”. I was told I would
spend two weeks lying perfectly flat, not moving, and having a nurse come drain
off 10ml of CSF every hour. Being still was highly emphasized, I was given
whatever needed. It was explained that if this didn't work, it wasn't known
what more could be done, and I should prepare for a life of altered mobility.
It was said that they really didn't want to induce a coma, so lay still I did.
I won't get
into all the issues involved in a nurse coming to bleed off 10ml of spinal
fluid every hour, around the clock. I will mention that it was very slow, and
could sometimes take ten minutes, and they insist on waking you each time, if
they can. There were a number of incidents, and issues. One particular time,
after a nurse came and opened the valve, she left to briefly attend to
something, but forgot to return. It was bad; I'll leave it at that.
In
conclusion, it worked. I had three surgeries to my spinal cord within 18 days.
Finally, I was able to go home from the hospital without it tearing open again.
Today, I walk around, and can drive a stick shift. I'm calling it a success.
Had I elected not to have any of this done, I would surely have suffered
incredible pain, for a long time, only to be left completely paralyzed in my
left leg at the very least.
5) Having gone through the
experience, what do you think are the most critical questions for someone to
ask their doctor about surgery and treatment of this kind of schwannoma?
I will
answer strictly speaking only about the kinds of schwannomas I'm familiar with,
located on the spinal cord, as well as what has been transmitted to me by the
professionals who've worked directly with me, on my case.
My
understanding is that at this time, there is no such a thing as
"treatment" for schwannomas, and I mean nothing. There is only
removal, by surgery, and ONLY when the risks of inaction outweigh the risks of
surgery. The risks of surgery are very high, as you may expect with the spinal cord.
We're talking about cutting directly around, and on your spinal cord after all.
It was expressed to me that, obviously, the closer to your head, the more
valuable the real estate. It's the difference between losing the use of your
legs and bowels, or the function of vital organs. Oddly, the one in my brain,
which terrified the crap out of me, was of the least concern to the surgeon. He
explained the brain is soft; it has plenty of room to allow growth. The ones
that scared him, we're the few within my cervical, or neck, area. There is far
less room to grow, and they can affect any number of things below, in any
number of disastrous ways. They are also definitely NOT somewhere to go
operating, unless to simply preserve life. Location, location, location.
Observation
with MRIs, and alertness to any odd symptoms, seems the only thing to be done.
- Know ALL
the risks. I've lost all sensation in much of my left leg. There is a
"dead patch" that goes from my anus to my pinky toe. It wraps around
my leg in places. I feel neither pain, nor temperature. This wasn't emphasized
as a possibility in pre-surgery discussions, as they were clearly much more
concerned about motor control, and the possibility of me being in a wheelchair,
or incontinent. I mention this only to urge someone to know ALL the risks of
the operation, however slight, and try to see past what are immediate concerns
of the doctors. Believe me, I have no regrets, it's a very small price to pay,
to be relieved of the suffering prior to the operation, and maintain full
control of my legs. It just wasn't something I was expecting, assuming I had
any idea what to expect post-surgery. We sure knew what to expect without
surgery, I was already in the middle of it.
- Ask to
know about your doctor's experience in any operations he’s performed relating
to the spinal cord. I didn't, I trusted that he'd done many, and often. This
isn't somewhere to trust. Get verified confirmation. The risks are simply far
too high. If anything goes south, live the remainder of your life knowing you
had a surgeon who was very experienced, and you weren't just part of someone's
learning curve. In this respect, I was fortunate to have someone qualified,
though I hadn't confirmed anything on my own.
- Ask about
details of what recovery may be like, assuming everything goes smooth, as well
as, if it doesn't. I was only concerned about getting this thing removed as
soon as possible, recovery was an afterthought. Nobody seemed focused on it
much.
6) Can you describe what the
recovery process was like for you – if you feel you have made a positive
recovery…and what things you have done that have been of most help to you? (Also, you are free to describe what doctors
tell you to expect from your recovery if you haven't been in surgery yet)
I'm going to
describe recovery, beginning with my return home, and assuming the reader is
someone who's not experienced any long term, post-surgery hospital stay. There
were a few surprises for me. I suppose I was supposed to "know" a few
things, or, actually read through the volumes of paperwork you go through at
the hospital. I doubt I'm the only one who didn't.
- Be aware
that you may experience somewhat serious episodes of constipation. This is a
side effect of the opiate pain relievers. I was given stool softeners that were
little help after weeks of all sorts of pain medications.
- I didn't
have any kind of physical therapy rehab. I remember everybody I came across
later asking, then being in disbelief about it. I don't even remember it being discussed,
or offered. I speculate that it was assumed that I was in good overall shape
before, so, I’d return to good shape if I could still use my legs. This is what
I assumed. I would advise getting answers from your doctor before, and have a
plan. I wish I had.
- One of the
toughest things for me was being unable to bathe, or shower for a week after I
returned home. Having three surgeries through the same site in rapid succession
made for an ugly scar, and tough stitches, stitches they did not want to get
wet. This sounds insignificant, but it troubled me, maybe more than it will
others.
- Worth
noting about the lead up to the surgery, and the recovery after, was weight
gain. This was due to the steroids (Dexamethasone) I was taking to keep the
swelling down, preventing paralysis, and easing my pain. My experience was very
bad. My primary care doctor was getting frantic that I was going diabetic, and
forming cataracts from the high doses of Dexamethasone. The eating, and weight
gain was crazy. I gained forty-five pounds, in about thirty days. I was covered
in a rash of acne, had terrible gastric & indigestion problems, and
emotional mood swings, swollen feet, and ankles. In the hospital, post-surgery, they had to
give me daily insulin injections.
- I've made
a positive recovery. Today I have a few limitation, they are minor, if not
insignificant, bearing in mind the magnitude of the whole thing.
7) Are you able to do all or most
the things you did before? (Also feel free to describe your abilities even if
you are still living with the tumor or tumors)
I am able to
do nearly everything I was able to do before.
In addition
to this condition, I also have degenerative discs in my spine. For the most part, I get around like someone
with a weak, painful back. There are occasional flare-ups, but there are also
days, or weeks that go by with little more than sharp pain when I bend over to
pick stuff up, or when putting on shoes and socks. I have learned to always
recline when sitting, and avoid walking, or standing for long periods. Running,
jumping, lifting, or carrying heavy loads are no longer options for me.
I don’t want
to go into the long list of issues I have, because I feel they are
insignificant compared to what the many Schwannomatosis sufferers live with,
also, they can easily be imagined as what anyone recovering from lower back
issues such as a slipped or herniated disc would experience. This is not to say
that this is all I will ever experience. There are doctors waiting, and
watching to see what’s going to happen next.
I’ve been
told to expect, and be alert to, or expect any combination of the following: Incontinence,
seizures, pain, numbness, and burning, itching, loss of strength or movement.
