Adult Ependymoma: A Patient's Story
My notes and thoughts

 

Some of the things I've learned over the years...


What does an actual ependymoma surgery look like?

Reader beware - if you're squeamish, don't watch:  http://www.youtube.com/watch?v=bU9pXJohg8E

Provocative essay by Pasquale Bruno about his GBM
 http://www.washingtonpost.com/national/health-science/brain-cancer-at-age-77-doesnt-stop-writer-from-going-on-with-a-good-life/2011/09/20/gIQASGjdaL_story.html


Sensory System Problems

My wonderful physical therapist Val Gibson told me in 2010 something that rings true.  She said, "Carol, No one else feels what you feel and sensory system dysfunction can be just as disabling as motor problems."


Beware of Levaquin
I took this antibiotic for infections around my trach stoma with no trouble several times but the last time I had all kinds of problems with it, including extreme calf pain, flu-like symptoms and intense stiffness.  The worst thing is that the side effects lingered for weeks after stopping the medicine.  There's a medical term for my reaction - it wasn't that I was allergic, but wow, I'd never take it again if I could avoid it!
 
What is an Arterial Blood Gas (ABG)?
An ABG determines the level of carbon dioxide in your blood.  They draw blood out of your artery and it can hurt quite a bit.  I seem to have arteries that "roll" after they are poked so I am a "difficult stick."  I've tried drinking a lot of water beforehand but it doesn't seem to matter - what matters is the skill of the person drawing the blood!  They'll have the results in a matter of minutes.
 
With practice, I'm getting the hang of diaphragmatic breathing
Wikipedia explains:  "Diaphragmatic breathing is the act of breathing deep into your lungs by flexing your diaphragm rather than breathing shallowly by flexing your rib cage. This deep breathing is marked by expansion of the stomach (abdomen) rather than the chest when breathing. It is generally considered a healthier and fuller way to ingest oxygen, and is often used as a therapy for hyperventilation and anxiety disorders."  When I master this breathing technique I can achieve a peaceful feeling / a relaxation response.
 
I recommend Ram Dass' documentary called Fierce Grace
How to find meaning in your life after a physical calamity?  From someone who thought he knew everything / felt everything (you can argue about the roots/reasons for this hyper self-awareness), but he realized there could be even more for him post-stroke.
 
He writes:  "The stroke [like a brain tumor, is a path].  It's like a whole new incarnation.  There are qualities in me that never would have come out.  I'm at peace more now than I ever have been.  The peace comes from settling into the moment.  This moment is alright.  Now, this moment is alright."
 
He always enjoyed driving manual transmission cars.  He lost the use of his right hand and had other problems that made it impossible to drive.  He came to understand that when his caregiver drove him, he could either be a [frustrated, unhappy] non-driver or "someone with a chauffeur."  Now, that's getting it!


Sixth Sense?
"In addition to the familiar five senses—touch, sight, smell, hearing, and taste—scientists know of a sixth sense called proprioception, the sense of where your body is in space that allows you to touch your nose even with your eyes closed. Proprioception (PRO-pree-oh-ception) also informs balance and how to put one foot in front of the other to walk without looking at your feet." I know first-hand about proprioception and problems originating in the cerebellum - I could be reading about myself in most of the articles.  (Close your eyes and try to touch your nose with one finger!  When I do it my finger lands near my ear...)  I think this is a key root of my situation.  I'm particularly intrigued by Dr. Oliver Sacks' The Man who Mistook his Wife for a Hat.
 
Speech Therapy Gem
My wonderful therapist Darlene Williamson recently reminded me:  at home, don't speak to anyone unless you are in the same room.  In other words, resist the urge to yell and expect you'll be understood just by the raised volume of your speech.  What a small thing -- but such good advice.  Think how pleasant our households would be if we all did this!
 
Describing what it feels like to have balance trouble
People have asked me what my balance problems feel like so I came up with this:  sometimes I have 30 pound weights in the front which makes me feel I'm heading toward my toes, and then seconds later, and without warning, the extra "weights" shift behind my back and make me feel I'm going to pitch backwards and fall.  And most of the time extra "weights" are also on my left or right side, tilting me in one direction or another.  I always feel the imbalance all the way down to my toes... Remember the moon bounce when you were a kid?  That's another way to describe what it feels like when I move around.  And I never get to exit the bubble!
 
What exactly did you say?
My troubles with clear speech and a tongue that freezes result in some funny exchanges with people.  I spoke to Mom about a "flat of marigolds" and she thought I said a "flight of miracles" - This reminds me of the time in 2000 in the hospital, Elizabeth heard me say "I want to go to junior college [at Wolf Trap]."  She replied, "but Carol, you already have an MBA."  And it turns out I was saying "I want to go to Judy Collins!"  Another funny thing is how people hear my name as "Coral Rush!"
 
My wonderful experience at the University of Virginia hospital in 2005
At the University of Virginia in Charlottesville, I had exceptional nursing care both in the neuro ICU and on 6th Floor West.  Thanks especially to Terri Salazar, Kimberly Carter, Angelina Hill, Mary Kay Heberling, Staci, Sue Luba, Gabriele Ford, Annette Stiltner, Erica Umback, and Ronnie.  I also was fortunate to be cared for in the OR by Dr. Kirsten Leff, my super-nice and capable anestheseologist, and by Cas, my comforting and friendly nurse in the OR.  Dr. Jane's entire neurosurgery team was top-notch.  Rita Hunt was my occupational therapist and Elise drew my blood - she was so nice and professional.  I also really appreciated the skill and smiles given to me by Tammy, my speech therapist, who assessed my swallow (or lack thereof!). 

"Trying can be very Trying"
I know things can always be worse and I hate to complain but if you have a brain tumor it's a tough tough road to travel every minute of every day.  I saw a card once that says "trying can be very trying" and that pretty much sums it up!  I'm so tired of working all the time to do even the simplest things like getting out of bed, walking from room to room, getting dressed, putting my things away.  I'm not sure how long I can take it but I know I can't give up.  I hate how self-pitiful I might sound to people but frankly this is a test I almost cannot imagine nor even describe adequately.  If you are a caregiver of a brain tumor patient, please know from my experience how hard a time your loved one might be having.
 
Acts of Kindness
I count the kindnesses I have received to be my most cherished gift.  I have been so fortunate to have my friends - and the friends of friends - reach out and offer incredible amounts of help in numerous ways.  Friends have driven me to and from appointments at all hours of the day.  Generous people have brought my mother and me delicious, easy-to-eat full picnics, complete meals and side dishes.  Especially nice is when people say "I can drive on Monday" or "Give me your list and I will go to the grocery store for you" or "I will bring dinner on Tuesday if that works for you" instead of saying "let me know if I can help" - funny what a difference there is in these two approaches.  Both are nice, but offering something specific is far more helpful.  My sister's brother-in-law came over almost immediately after we called and fixed two seemingly unfixable problems at our house - and you would have never known he had anything else to do.  I've loved the care packages I've received which are full of fun, personalized gifts, often things I wouldn't buy for myself but things I have to admit I have enjoyed such as special soaps and lotions.  The unprompted calls, cards and notes that don't require a response from me have brightened my days more than people probably realize.  Just being reminded that someone is thinking of me when he or she isn't nearby is a huge morale boost. Cancer survivor Christine Clifford calls it a "feeling of unconditional support" and she's right, it's a significant factor.
 
Taking Decadron
Decadron, or Dexamethasone, can be both an enemy and a friend of brain tumor patients.  It is used as an anti-emetic before chemotherapy and it is also used to shrink the swelling of the tissue around tumors to help control headaches and other serious problems.  It's a powerful drug with almost sinister side effects.  I hated being on it.  Decadron makes your muscles waste away and I got a terrible burn in my legs when I got up off the floor or climbed the stairs.  I can't describe the pain in my upper legs when I would try and get up from a seated position.  To get out of the car I had to pull up with my arms - my legs were that weak.  I had shin splints (the tibial muscle up the front of each leg was weak) that were very painful.  A regular dose of Decadron made me edgy and impatient and it caused acne and nasty heartburn as well as excessive facial and body hair (nice!).  I had a condition resembling Cushing’s Syndrome (Cushingoid) that can result from taking a long-term course of Decadron. The symptoms include the appearance of a swollen, rounded or "moon" face, a reddish complexion, obesity which may be noticed as swelling of the trunk (this is awful), and the deposition of pads of fatty tissue behind the shoulder blades described as a "buffalo hump". The weight gain is especially bad because it happens in very noticeable areas - in my case, in my upper legs, around my lower waist, and in my cheeks.  I gained 20 pounds on Decadron which is a huge change.  Decadron can cause sleeplessness which is exactly what a worried, exhausted brain tumor patient doesn't need!  So I tried Benadryl, Ativan, Ambien, or Valium at night to combat the effects of the Decadron -  it's a juggling act when it comes to medicines.  It's ironic that all the years I would have taken advantage of being wide awake in the middle of the night to do some creative thinking and then when I least could tolerate that lonely feeling, I was wide awake, completely unable to fall back asleep, and of course my mind was going 100 miles per hour - mostly worrying.  [In the pictures page I've posted a photo of how much the Decadron changed me - the moon face - just terrible.]

What is chemotherapy really like?
Hmm... it depends on the person, and it depends on the drugs you are getting.  They also give you pre-medications to prevent the nasty effects of the chemo drugs themselves.  (Of course these pre-meds come with side effects too - happy days!  Apparently the pre-meds have come a long way in preventing some of the infamous side effects from chemo like horrible vomiting.)  My two drugs didn't make me sick to my stomach the way you hear about most chemo.  But they made me completely bald and they depleted my energy almost to my breaking point.  Being tired is when you are in bed and don't have the energy to roll over - or reach down for the covers - that's chemo tired.  Every person reacts differently - in my experience your entire body is affected.  Just getting the chemo is a bizarre experience - there's a lot I could write about.  You hardly know you're getting anything because it drips in without a sound, but afterwards your blood counts drop in every way, your digestive tract is impacted, your kidneys act differently, your skin reacts to the sun differently... You know that you have taken in poison and your body is processing it however it can, hopefully by killing off the bad stuff but not harming the good parts of you.  What a combination!  My fatigue from the chemotherapy was like nothing I have ever experienced - the tiredness went deeper than my bones.  With chemo, even talking can be taxing!
 
special circumstance for brain tumor patients
I never want to complain, but honestly, having a brain tumor to deal with - combined with the effects of the treatment for it - like the chemotherapy - is almost more than a person can take for too long.  A concrete example -- during chemo if I had to get up and go to the bathroom, I had to unplug the IV pole.  Well, the great nurses at Fairfax Hospital always would help if I asked, but the truth is that my head was so messed up that I didn't even want to bend over and try to do it.  And when I did get up, I had to be careful not to fall.  Maybe you can call it "adding insult to injury" but as a brain tumor patient, I can say that having neurological problems such as double vision, headaches, dizziness, weakness on one side of the body - along with the effects of something like chemo - it's a huge thing to cope with, very discouraging at times.
 
What is intraoperative MRI?  Stealth MRI?
Intraoperative MRI is considered to be one of the most significant advances in image-guided neurosurgery.  Dr. Jane used the Stealth technology for my December 2005 surgery.  The Stealth system is an eponymous technique for using intraoperative MR/CT scanning to localize the tumor with respect to the position of surgical instruments.The night before the operation, a neurosurgeon made marks in permanent marker on my head and attached special "stickums" and then I had a quick MRI which enabled the surgical team to map the tumor effectively the next morning. 
 
Bring a notetaker to every appointment
One of the most helpful things my family members have done for me is one person has taken precise notes at every single one of my "big" doctor appointments.  In light of the usual seriousness of the situation, there would be no way for me as the patient to absorb all that is being said directly to me and to participate in the conversation with the doctor at the same time.  The notes have been an invaluable resource long after each appointment.
 
Getting through a routine MRI
To get through an MRI, take 5 mg of Valium or whatever amount works for you.  I have had good luck with 1.5 mg of Ativan.  It takes the edge off of a "tight" situation, and if you are worried about the results, a little help with anxiety doesn't hurt!  I also have been lucky to have a buddy stay in the room with her earplugs on!  The time it takes for an MRI of the brain with and without the gadolinium contrast has dropped a lot since 2000.  Expect 45-60 minutes for an MRI of the brain.  A complete spinal MRI series takes 60-90 minutes.
 
Watch out for depression after surgery
A study at the University of Virginia revealed that patients who have surgery for serious or high-grade tumors can suffer depression after surgery and this can continue for at least six months after the operation.  I was acutely depressed in 2000 and took Celexa to combat it;  this reaction to the news of a serious tumor and the surgery to remove it is very real.  Chemo was so tough for me that I added Celexa back to my drug arsenal.
 
Amnesia after surgery
If you have brain surgery, it is reassuring to know that both the anesthesia and the pain medicines have a beneficial amnesiac effect.  The strange thing is that I felt hyper-aware of my surroundings from the moment I woke up after each surgery, but sometimes I didn't make sense and today I don't remember much at all about those critical and trying days.  (My family tell me that amnesia is a very good thing in this case!)  I can remember excruciating pain at times - and strong medicine such as Fentanyl and Dilaudid and Morphine - but as I write this I can't recall the pain.  This is a typical reaction to anesthesia, trauma and sounds similar to a woman who says she can't feel the pain of childbirth long after it is over.  So - if you are a caregiver and see your loved one in pain and distress after brain surgery, make sure the patient gets the maximum pain medicine available and know that when it is all over, the patient probably won't remember all that much.  I think doctors and nurses tend to minimize pain so it's important to have a caregiver who can help you be assertive and get the medicine you need.  The staff at UVa were very sensitive to my pain management needs which I appreciated.  I even received pre-surgical counseling about pain so I felt reassured prior to the operation that I would not have to worry about this.
 
The ventricles of the central nervous system
Your brain has four fluid-filled cavities called ventricles.  The ventricles produce cerebro-spinal fluid, a clear, normally colorless fluid that bathes the brain and the spinal cord.  Your ventricles are deep inside your brain and they are hard to get to.  Because of the tumors themselves and the treatments to remove them, I feel my "core" has been traumatized.  Maybe this is how a person feels who has had heart surgery.  That a person can even recover from such an invasion of the core of her body is a testament to the body's amazing ability to heal.
 
Double vision
Double vision and nystagmus (an involuntary flickering of the eyeballs) are common side effects from surgery in the fourth ventricle.  Inflamed tissue, even microscopic inflammation, such as that caused by radiation, can cause double vision.  When mine has been the worst after each surgery I have worn surgical tape over one lens of my eyeglasses.  (When I had a severe flare-up after radiation I took a steroid for one week and it really helped.)  An ophthalmologist can do wonders with prisms that are built into your lenses and surgery might be an option for some patients.  My problem has been worse after each surgery.  I see two images when I look in every direction, and it is worse when I look toward the left.  To focus on an image I have to close one eye to eliminate the double image.  Sometimes people think I am winking at them!  My vision got significantly worse starting June 20, 2005.  I either wear one contact lens or wear my new glasses with the prisms ground in.  It's a real adjustment and frustrates me no end!  Even though I have the corrective glasses, my eyes aren't fusing well so it's hard to wear them.  When I can't stand it, I have to put just one contact in and go around that way (not driving though).
 
What is radiation necrosis?
This term is widely used and it has confused me.  As I understand it, radiation necrosis is the death of living tissue and it usually occurs at the original tumor site.  It's a potential outcome of radiotherapy or radiosurgery that can take years to manifest itself. On an MRI, an area of necrosis can enhance with the contrast just as a tumor will.  Because of this, it can be hard to differentiate between a residual irradiated tumor and an area of new necrosis. 
 
About lumbar punctures
LPs are also known as spinal taps and their purpose is to draw cerebro-spinal fluid out of the spinal cord to check for malignant cells.  The pressure in the brain can be measured also.  With the local anesthetic, the spinal tap itself shouldn't hurt, but the headache you can get afterwards can be excruciating.  I was told that young women can be most affected by spinal headache - I am a prime example of this. After the last LP as an outpatient I made every effort to stay flat for nearly 8 hours after the procedure by resting in the clinic's recovery room.  This made a tremendous difference as I escaped the horrible headache I got the previous times.
 
What to try to make swallowing easier
Difficulty swallowing is one of my nagging and scary deficits.  All of my doctors and therapists, especially my speech therapist, have advised me to drink more water.  The problem is that water is the toughest thing for me to handle - I often get some drops down my windpipe even if I swish the water around first before swallowing.  My best tip - drink using a straw - it's a sure way for me to drink water and not choke.  Another tip is to tip your chin down to swallow safely.
A normal person swallows 1200 times every day without even thinking about it.  It makes perfect sense that trying to swallow, i.e. doing something that has always come naturally, is a hard task indeed,  I also have had great success with the so-called "effortful" swallow or hard swallow.  With practice, you can learn to swallow this way when you need to.  Many dysphasic patients swear by a fairly new technique called VitalStim® Therapy.  I tried it but it didn't help me.
 
There is a way to try and prevent a choking episode...
About 18 months after my first surgery, I discovered that I could dislodge a piece of food that was going to cause me trouble.  It's hard to explain, but it's something I do with my throat and cough that brings the food out of my throat.  My tongue is not very flexible anymore so I can't rely on it to do this.  Plus, it wouldn't reach as far down as I need to re-arrange the food.  If you're a patient, experiment with this - try clearing your throat with a lot of force - that's the best way to describe my technique.  It's not a pleasant sound, but it works - and the long fit of coughing (or absolute choking) that would come if I didn't do this step would be far louder and more disturbing to my fellow diners.
 
You and your family should know the Heimlich Maneuver
Before my permanent trach, I was saved by the Heimlich Maneuver a half dozen times.  Each time, I had no air in my windpipe because food was lodged there.  This is a terrifying feeling.  The culprits were roasted potato, chicken, banana, ravioli and soft bread.  Another time was chicken and another was fried shrimp - the tiniest piece!  Here's the website which explains how to do this life-saving procedure:  http://www.heimlichinstitute.org/maneuver.html.  Remember too that if you have habitual trouble swallowing, don't get too hungry, slow down, take small bites!  And try not to eat alone! 
 
Taking pills when your swallow is diminished
You don't have to grind up your pills in order to get them down.  Even with my diminished swallow, I can swallow pills by putting them in foods such as ice cream, yogurt, cottage cheese and applesauce.  If I'm away from home, I carry a small container of applesauce with me in case I need it.  Lots of practice means I can take my pills in almost anything - including cake and brownies!
 
The human body's ability to heal
I believe that the body isn't content with imbalance or sickness and tries to return to "normal" - this belief has helped me persevere through all of the pain and unpleasant sensations that have plagued me since 2000.  After my first operation, I could not move my tongue outside of my mouth or around in my mouth, a dramatic deficit- with therapy and time I fortunately got most of the movement back.  After the third operation, my tongue is hard to move once again, history is repeating itself, though not to the same degree.
 
Ice cream
If you like ice cream and you want to keep your weight up or you want a food that is easy to swallow, dive into the first container of ice cream that your caregiver brings you!  It is a relief when I eat ice cream because I know that I will not choke on it.  Its consistency is ideal, not to mention its ability to satisfy my sweet tooth!
 
What is dysarthria?
Dysarthria is defined as a difficulty in articulating words due to disease of the central nervous system.  My first surgery left me with dysarthric speech that persists today.  Sometimes I sound like my voice and tongue are under water or as if I have a hearing problem.  To make my speech more precise, I try to speak slowly and use a slightly louder voice.  I also speak better if I'm more rested and if I'm standing up straight.
 
The importance of strength training
I lost nearly 25 pounds leading up to and following my first surgery and left the hospital at 92 pounds.  I was always into fitness but since 2000 I have been dedicated to it.  Now I work out for life - that's a strong motivator.  My speech therapist told me after the first surgery that I should get my body as strong as possible whether or not I had a tumor recurrence.  If I did, then my body would be stronger and could deal with it better.  She was right.  I'm not "hard-core" but I have tried hard to build muscle tone and I'm convinced that my muscle strength helped me get through my second and third surgeries.  I am a regular at the awesome body sculpt and body pump classes at Gold's Gym in Sterling -  Linda Carr is the best teacher - she keeps an eye on me and motivates me - I found I can do a lot of the class sitting down and still get quite a good workout. 
 
Myofascial release therapy
If you've never heard of this, read on because this technique is amazing and it works!  First you need to know that your entire body is covered by a layer of tissue under the skin called fascia.  It covers every organ, as well as every muscle and every fiber within each muscle.  Tightness in the fascia - anywhere in the body - can cause pain anywhere in the body.  The therapist gently stretches any tight tissue using slow "passes" over the target area.  Working around scar tissue is one thing my therapist did which helped tremendously.  I started to move freely only from this therapy.  I have continued it all these years.  Myofascial release is not massage.  It is more subtle - it usually feels good and it loosens up your body effectively.  It may be covered in part by insurance as an adjunct to a physical therapy program prescribed by your doctor.
 
The will to move
Many times in the hospital I believed there was no way I could even raise my arm, let alone move my body.  Sitting up caused me to faint and required more energy than I could muster.  I still can't believe how much pain I endured and how decimated I felt.  It was so critical that I had terrific therapists making me try, and I also had the companionship of my family and friends which motivated me to try in order to make them happy.  These two forces - from outsiders and insiders - drove my recovery and got me out of the hospital.  I know some of it came from inside me, but without the encouragement and occasional "tough-love" it would have been easier to give in.  My wonderful friend Ouida Barclay, a respiratory therapist, told me one day in the hospital:  "Carol, you have two choices, try and get up or continue to lie there and become a vegetable, because I guarantee if you don't make your body move, then it will not fight you - it will happily just give up.  You have to take control."
 
Why are there so few statistics on ependymomas?
I have believed this for the past six years - and I believe it today - that there are simply not enough adult patients to provide accurate statistics on recurrences and survival.  To add to the difficulties, each patient has a different story:  every case is slightly different - age, health, gender, size of tumor, exact location of tumor (ventricle, brainstem, frontal lobe), exact cellular structure, skill of the surgeon, how entrenched the tumor is or infiltrated into the critical brain material.... and don't forget the variable of exactly what kind of treatment the patient had on the first occurrence- 100% surgical resection - 90% - 95%;  lots of radiation or less radiation; chemo or no chemo.  I try not to put a lot of emphasis on the few statistics available.  There are many variables that enter into the recurrence statistics and I don't think there is enough data out there to really be certain... The one statistic I am sure of is mine!  Paul Zeltzer MD in Brain Tumors:  Leaving the Garden of Eden writes about this in a similar way: "While it is true that some types of brain tumors have low survival rates, not everyone with that tumor type will die of it."  He reminds us that prognosis statistics are for groups of people.  No physician knows ahead of time who the specific survivor(s) will be.  He then writes, "It might as well be you" (43).
 
Hydrocephalus
This is a condition when the ventricles of the brain fill with fluid and the pressure becomes too great.  When I had this in the fall of 2005 it was terrible.  My symptoms were the following:  whenever I stood up I'd get an excruciating headache (I can't even describe how much it hurt - hydrocephalus headaches are notorious) and I also could not walk in a straight line. I literally lurched.  My MRI clearly showed the expanding ventricles;  happily, a VP shunt (October 4, 2005) completely fixed the problem. I am grateful to Mike McCool for getting me to Dr. Jane as soon as possible so I could have this procedure.  I don't think I could have gone another day with the hydrocephalus, that's how bad it was.  VP stands for "ventriculoperitoneal" - meaning a catheter drains fluid from the brain's ventricles down into the abdominal cavity.  To add to my feeling that I am one big science experiment, the shunt came with three new incisions and scars:  two on my head and one on my abdomen.  The catheter pokes out of my scalp which makes it hard to comb my hair or sleep on that side.  The biggest complication I have from the shunt is when it rubs against my intestine which can really hurt to the point that I can't stand up straight.  Regular digestion is one key to preventing this kind of pain.  Maybe this tidbit will help someone else!

[2014]

Best round ever at Duck Woods (2003)

With Mike McCool in Paris (2003)

Bottom MRI shows tumor-filled 4th ventricle (2005)

Top photo shows tumor-free (2007)

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