Living with the Axe Over Your Head

Everything is different after a major illness.  Things are different for many reasons - first among them is the knowledge that there was always a chance that you would not come through it.  Or that in fighting your illness you might be inexorably altered afterwards.  After my 2009 removal of the schwannoma in my spinal cord, I have told people that I am probably about 85% as good as I was, physically, during my best and most healthiest days before the tumor.  When something serious happens, there is a good chance that your body will be changed and there is nothing whatsoever that you can do about it.  As my doctor told me that I would probably have a chronic softening of the spinal cord for the rest of my life - a condition called myelomalacia, I certainly don't remember feeling upset about it.  Because even with continued pain and pressure in my back, and with continued strange feelings in my legs sometimes - I have always preferred to count what I have, rather than dwell on that 15% of ability that I may have lost.


But there is another part to it, something that I have only told a few friends privately - at least up until this blog; and that's the realization that a tumor could occur again.  I know one person who has had a schwannoma and a spinal cord melanoma that came after.  Jamie Dubinsky, a dear friend and contributor to this blog - has just had her 2nd schwannoma removed.  So there is always a feeling - something I would liken to an axe over my head...and it causes me to constantly reassess each day of my life, living with the possibility that a tumor may recur.  Now from time to time people say to me "You know that's never going to happen to you again" and I appreciate their intentions, but I don't really understand what they mean by that at all.  Because it already DID happen once.  I can't say with any certainty that it will not happen again.  So I look at every day post-surgery and recovery as bonus time.  I realize, with no illusions, that much of what I appreciate could have been taken away - so I find it is actually sobering and helpful to see each day for the great occasion it is.  When my son says "Dad let's go for a walk in the neighborhood", 99% of the time we do it.  Because I can all too easily imagine trundling my wheelchair beside him if things had gone differently.  I am upright.  I can walk.  I have strong legs and I work hard to keep them that way.  I'm lucky.


And speaking for myself only, I do get a little puzzled when people say that this was all part of God's plan, or that his hands guided the hands of the surgeon, that kind of thing.  Since I am not religious (I joke to people that I am a Buddhist leaning agnostic.) then I don't have the consolations of religion in my mental toolkit.  Mainly because I never have been able to reconcile any idea of a benevolent God with one who would not stop the growth of painful tumors in good people who are in misery for no good reason.  I don't see any kind of cosmic lesson to be had here.  My body made the tumor, what to do after had to be decided on.  Rather, I banked my recovery on the love of my family, and trust in an excellent neurosurgeon and his team.  I was not disappointed in either of those things.  When it comes to a confrontation of this sort, I think that people have every right to seek the consolations of their conscience.  If that means lighting a candle at church, then by all means do so.  If that means prayer for you, then pray.  But this did not work for me - it was, as mentioned, all about holding on for my family and those who loved me.  That was enough for me to make sense of it.


So I celebrate each day, and am happy to be here to do it.  My wife and I are about to have our 2nd son, and I'm looking forward to running in the park with both our boys!  And perhaps one day if he wants to know about that scar in the middle of my back, and why my left knee buckles, then I'll tell him the story.  It isn't a hero's tale.  Not by a long shot.  But more a story of living on bonus time.  And maybe, just maybe, he'll come to see that, in reality, it is ALL bonus time.  From the cradle to the grave.  It's all bonus time.  And I hope he lives that way. 

Neil


(Disclaimer: advice shared on this blog or on our related Facebook page cannot be a replacement for proper medical treatment by a trained physician.  Speak with a Doctor before making any medical decisions.)

Recovery is Not a Two Lane Highway

 (Our good friend Jamie Dubinsky just had surgery to remove a schwannoma from her spinal cord.  Here she shares a bit of her experience during the initial stages right after her surgery.  My thanks to Jamie for the frank and honest way that she deals with the tumor removal and subsequent issues.  Speaking honestly about this kind of thing will be useful to others who may read it.  Thanks Jamie!  Neil)

Recovery is definitely not a two lane highway, so far it has been a slow and winding road….  November 6, 2012 was the date of my spinal cord schwannoma surgery.  What a joy when I awoke from the 5 hour procedure, I could feel my legs and my toes!  My surgeon informed me in my still sedated state everything went great and the tumor was removed without any damage to my nervous system.  

Although recovering from anesthesia can be awful in itself and cause a bad headache, the headache I felt on November 7^th was one a wouldn’t wish on my worst enemy.  When the surgeon came in that morning to see me for my discharge I informed him about this stroke-like headache and he decided I should stay another day in the hospital.  The headache was so severe it was trumping the pain from surgery.  It was all I could think about!

November 8^th my headache subsides to a point, but every postural change I make sends a wave of stroke like pain over my brain.  The pain under my incision is there as well as the numbness in my left front thigh and this unusual bloat in my lower abdomen.  The surgeon visits me around 8 AM and I am released despite all of these painful symptoms my body is plagued by.

The trip home was not a comfortable ride with the nausea from all of my bodily pains.  Once home I become what seems to be a permanent fixture on the living room couch.  No position is comfortable dealing with this unrelenting headache and this huge golf ball mass of an incision growing on my back.  Three more days go by and the only thing I can focus on is my headache, thinking I have a blood clot in my brain, viral meningitis, or a brain aneurism.  I am constantly crying and my parents and boyfriend think I am over reacting or becoming depressed.  Finally, my parents decided yes something is not right and suggest calling the physician’s assistant on call.  He gives me an answer of “Hmmmm, come in tomorrow morning”.

Monday morning my parents and I travel back to Pittsburgh to see my surgeon.  The PA comes in to check me out.  I tell him about the pain in my entire lower back, the numbness in my thigh, the unusual bloating in my lower abdomen, but most importantly about the headaches.  The PA cannot tell me why my lower abdomen is bloated and proceeds to address my headaches.  He checks the incision on my back and is astonished at the size of the golf ball in my back.  He leaves the room and immediately brings in the surgeon and fellow PAs.  The doctor confirms I have a cerebral spinal fluid leak.  There may not be enough stitches in the incision on my Dura Mater (spinal cord covering) and the continuous leaking of the fluid is the culprit of my headaches.  I am told we need to monitor the skin incision for increased swelling and any leakage.  

I prayed my little buns off that day for the swelling to dissipate and the headaches to subside.  Sure enough, Tuesday morning the swelling had decreased and my headaches 85% better.

One week later I feel like a human being again, unfortunately I still have the aches and pains of the surgery.  Now the headache has subsided I start to notice all of my other symptoms of recovery.  The shrinking ball in my back is extremely sore.  I cannot lie flat on my back and lying on my side is also uncomfortable.  The swelling in my lower back is still there and has become a shade of the night sky, black and blue.  The pins and needles sensation in my thigh has subsided towards the upper part of my thigh but has increased just above the knee.  

As the days go by, I feel just a little better, but I am not surprised by a new recovery symptom.  Just yesterday (one week plus one day post-surgery), I am starting to have sciatica like symptoms down my butt and into the back of my legs.  Last nights, sleep was hindered by what felt like a complete muscle spasm engrossing my incision site, the lower back and radiating into my lower abdomen (could this be the cause of my lower abdominal bloat?).

Since my surgery and the resolve of the cerebral spinal fluid leak, I feel a slow improvement every day.  Mornings are better than my evenings as far as my pain threshold goes.  Being a health nut and not wanting to poison my body I was opposed to pain killer type drugs.  As the advice of others with similar situations graces me, I find it is ok to temporarily take the meds despite my adversity.  The pain meds prescribed to me does alleviate the worsened pain in the evenings.  

All in all, everyday holds a new surprise for me both bad and good.  This week I am still dealing with the numbness in my left front thigh, occasional headaches, pain encompassing my entire lower back and wrapping around to my lower abdomen/hips, pain in my tailbone, sciatica like sensations down my legs, dizziness.  My walking gait seems to improve day to day even though my stride is that of a 90 year old woman and it is painful at times.  

One final note, someone once told me if I cannot take it day by day, hour by hour, try minute by minute.  A spinal cord tumor surgery is very serious even for the best physical condition and creates challenges unforeseen.  Thank my lucky stars, I am a fitness business owner and practice what I preach each and every day because this recovery period would be much more of a challenge! 

I have come to understand this long and winding road will surprise me with more bumps and potholes but the destination I am driving to will be filled with health, beauty and happiness!

(Disclaimer: advice shared on this blog or on our related Facebook page cannot be a replacement for proper medical treatment by a trained physician.  Speak with a Doctor before making any medical decisions.)

A Second Perspective - How Does a Schwannoma Feel Different than Normal Back Pain? A 2nd Answer, from a Person Currently Fighting a Schwannoma

 (I would like to thank the awesome and inspirational Jamie Dubinsky for offering to sit down and write her own answer to the question about how Schwannoma pain is different than normal back pain.  Below is her story, and her answer to the question...Neil)

 

In regard to how back pain arising from a spinal cord tumor differs than the usual everyday aches and pains, my story begins November 2011.  Although I have experienced back spasms here and there, they were episodes that usually subsided after a few days.  The pain I began experiencing last November is almost indescribable.  

I am a professional figure competitor and as I was preparing for the final show of the year I noticed I had the sensation I could not hold my bladder, which I attributed to the gallon of water I was drinking daily although it never bothered me in the past.  The sensation of bladder control dissipated after a few months and I competed in my final figure competition for the year.  Approximately one week following the event I began to experience unbearable back pain.  I could not think of anything I may have done out of my ordinary exercise routine.  

The only way I can define the pain I am experiencing, it feels as though something is eating away my body from the inside.  The pain is not alleviated through stretching and yoga exercises I practice every day.  I took heavy dose pain relievers and received no positive effect from the medication so I decided to forgo the meds.  I am unable to define the pin point of my pain as it engulfs my entire left lower back, around to the front of my body encompassing each hip and radiates down my left thigh just above my knee.  

Nights are the worst as I sometimes cry in bed not being able to find a comfortable position to fall asleep.  Lying on my back is not an option, sleeping with my leg elevated did not work and for some period of time sleeping in an upright position seemed to work.  Eventually, sleeping upright on a mound of pillows did not work.  

The pain is so severe at times I am nauseated from the overwhelming sensation.  Being a fitness business owner I have utilized some of my fellow chiropractors and physical therapists as a resolve to what was happening within my body.  In conclusion neither of those outlets led to any pain relief. 

As of July 2012 an MRI revealed a schwannoma located near the L2 vertebrae.  I am currently in the process of finding a surgeon to remove the tumor in ultimate relief of my pain.

In conclusion – My Symptoms

1.       Bladder control

2.       Frequent urination

3.       Overwhelming, consistent and nauseating pain

4.       Pain most severe when lying down or sitting

5.       Cannot detect the origin of the pain

6.       No relief from stretching/yoga and medication

7.       No relief from physical therapy and chiropractic care

8.       Joint Instability and Weakness

 (Disclaimer: advice shared on this blog or on our related Facebook page cannot be a replacement for proper medical treatment by a trained physician.  Speak with a Doctor before making any medical decisions.)

How Did a Schwannoma Feel Different than Regular Back Pain?

Welcome to the blog of Schwannoma Survivors and Schwannoma Fighters!  This blog is meant to be a complimentary page for discussion of issues related to Schwannoma tumors.  As some of you know, I am the survivor of a large Schwannoma tumor inside my spinal cord that was discovered and removed in 2009.  I have had a good recovery - not a painless one by any stretch, but I'm strong and I'm back to running and doing most the things that I've always loved.

Since I would like this blog to be firsthand stories and useful tips on both living with and living past Schwannomas, I thought an interesting first blog would be one in which we address the question of how different a Schwannoma feels when compared with normal back pain.  (I am not a doctor, and none of what I write should EVER be considered without the consultation of your medical doctor - but I did have the experience, and I will offer my impressions if they may be of benefit to anyone who needs to know.)

I remember that it was sometime around the middle of 2007 that I began to need to take two Aleve pills before bed every night.  Otherwise, I'd normally be awake at least once or twice a night with back pain.  Around that time I went to see a doctor (I won't name him but he is no longer my physician) complaining of back pain.  Frankly, he looked at me like buddy I've heard all this moaning a million times before.  He was quite certain it was good old fashioned lower back pain, the kind that we all have from time to time.  He gave me some ibuprofens the size of my fist and sent me on my way.  I asked him, after beginning to experience significant pain - if we should not arrange some scans to check out my lower back or my kidney.  The pain would be horrible at times, and it shot right into the area of my left kidney - making me wonder if there was something wrong there.  He brushed that aside - as he had brushed aside my previous concerns, and I remember telling him "Look, I know something is going on here.  I stretch, I rest, I do yoga - I'm very flexible, but I can't stretch out that pain and it NEVER goes away."  He just stared at me blankly.  Most of what I had heard about people experiencing sciatica problems and other disc issues told me that that kind of pain could be relieved or moderated by lying down - thus reducing the load of gravity on the discs in your back.  This didn't work for me.  The hot spot of pain was always there, and it did not go away or lessen while lying down.  Frequently it got worse while lying down. 

By mid 2008 I my balance was starting to go, and I remember a trip with my wife to New York City, where I noticed that I had a great deal of trouble going up and down the steps of NYC subway stations.  On flat ground I was ok, but my knees had begun to buckle and balance was a constant issue.  Eventually, in late 2008 and early 2009, I had such agonizing pain that I had to sleep sitting up in a chair in my art studio.  Lying down flat was just a lesson in misery.  Plenty of nights I'd lie there in tears, with no letup in the pain - and so tired I thought I was going to go crazy.  And another bad signal was that I was needing stronger medication just to function.  The pain level was reaching a critical point.  Then in early 09 came the nausea.  Another huge signal, constant upset stomach and nausea as I withered down to about 188 pounds (I was commonly around 210 to 220 most of my life).

At some point my first doctor had me convinced that it was all in my head.  I said to myself that this is just back pain.  I'm just feeling what other people were feeling.  All the while a tumor was growing inside my spinal cord, and things got worse and worse.

So in short, if I am to answer the question of how a Schwannoma in the spine feels different than disc problems or common backaches - I would answer in a few parts.  1.) I could not stretch out or completely relieve the pain at any time.  It was always present, standing or lying down.  2.) Nausea and buckling knees were a bad sign. 3.) The need for constant medication just to be able to function in a basic way told me that something was not getting any better.  The progression of the pain, the increasing loss of balance and weakness in my legs meant, whatever it was, was getting worse and it was serious.  I knew that at the time, but I had no idea what was causing it...

Lesson learned?  Take yourself seriously.  You are not being a hypocondriac if you sense a very painful progression in your condition - such as what I described above.  Other lesson learned, doctors are very intellgent people - but you should never let the fact that so many people have back pain diminish your concern for yourself and your health.  Be persistent and don't stop till you get an answer.  If you find you have sciatica or disk problems - then you'll know.  But listen to your body and be your own advocate.

Please feel free to visit the Facebook page of "Schwannoma Survivors & Schwannoma Fighters" at: https://www.facebook.com/SchwannomaSurvivorsSchwannomaFighters

(Disclaimer: advice shared on this blog or on our related Facebook page can not be a replacement for proper medical treatment by a trained physician.  Speak with a Doctor before making any medical decisions.)