Moral Support, Surviving Schwannomas With the Help of Family and Friends

Sometimes the answer to something fairly complex is right in front of you.  These days we just have to take a moment, and hopefully stop looking at our gadgets, and realize the obvious.  I was thinking about all this as it regards recovery from illness.  When you meet people who have suffered something similar to you, there is a natural tendency towards shop talk.  Ie, what medications you find have worked for you....how you manage chronic pain afterwards...or what kind of experience did you have with physio-therapy afterwards.  This is the case frequently with Schwannoma survivors, and that is all well and good - and natural.  Yet there is another element that looms large over one's ability to recover from illness, and that is the moral support from family, friends, and loved ones.

I should say that one of the things I hear most often, as the coordinator of the "Schwannoma Survivors and Schwannoma Fighters" Facebook page, is how grateful people are for the support of other survivors that are a part of the page.  Kinds of comments like "I am so glad to talk to people who really understand"...and "Thanks so much for doing this" etc.  What I realized in my countless conversations with these wonderful people is that one of the things that they value most is the moral support from other people who have been through the same experience.  I told someone it might be a little like the feeling of kinship that soldiers have if they have been to war together - but in our case, the war was in our own bodies.  It has been a happy and humble journey, on my part at least, to feel the kindness and warmth coming back at me from people who now have a way to talk to others who have been through this.  And there is a tone almost of relief - that intangible moral support is something that is, I think, not talked about enough. 

I have told many Schwannoma Survivors that in my worst moments, in late 2008 and early 2009 - I didn't much care about anything.  Just simply getting through one day and onto the next was a task that required every ounce of my energy, both mental and physical.  I didn't care about my paintings - which have been my life's work.  I didn't care about those beautiful places I was sure I would never see.  Even the presence of my extended family, who I all love dearly, receded into the background when each day just became a grinding, grueling struggle against constant pain.  When I think back to what sustained me, it was really only two things; my lovely wife, and our baby son who was born in March of 2009.  Little else mattered.  I felt like an airplane descending, and I knew that when I finally hit the ground, I would be in a wheelchair and life would be unalterably different.  But my wife kept at me.  She kept me going to Doctor's appointments.  She kept me pushing on, even when I was miserable.  And our beautiful little boy, Liam, needed only his smile and his being there to remind me that I had a home team worth fighting for.  In the end, in all came down to my wife and son - and to be honest, and I have told some close friends - and I believe I am saying this publicly for the first time now; if it weren't for those two people I would have had no qualms whatsoever about ending my life, by one means or another.  And I value life above all things.  I am not religious so I live on the assumption that this may well be the only life we have.  I would not waste it or throw it away on a whim.  But when pain has ground you down - those thoughts do creep in.  A pain sufferer's mind is ruled by that one inescapable thought...I want this to STOP.

Fortunately, my tumor was found and removed and I have lived not only to enjoy my days with my wife and son, but in November of this past year we welcomed our second son into the world.  I now feel that I could be broke and on my last penny and still be a rich man in this world.

So it is my hope that if there is someone out there fighting a hard fight, I hope you have your family or someone you love and care for and who do the same for you.  And I hope that there are people in your life that don't let you go when you are upset - who tell you and believe that you can conquer any mountain before you.  I  have said before that you can do anything if you are loved - and whatever you do if you don't have love in your life won't mean diddly shit.  I hope we can all remember the value of not just the empirical knowlege, but the moral support and no-strings attached friendship that gets us through rough times.

Many times in the past I have done things for people and they would look at me like "Uh, thanks, but what's your deal?"  I actually enjoy just trying to do good with NO expectation of reward.  But in fact, I think what the Dalai Lama said is true - that trying to live a life guided by kindness and compassion is as much for yourself as the others you help.  My payment for doing good - or trying to, is that good feeling I get when I put my head down to sleep at night.  I don't expect a pot of gold on my doorstep.  And I am suspicious of people who do good with clear expectation of reward.  No, I try to do good - to offer friendship and moral support because it makes me feel good.  And maybe...just maybe, it makes this venemous world a little more tolerable for people who want to live well in it.

So I say hat's off for that most intangible kind of support - that slap on the back.  That hug that you weren't expecting.  That extra beer you had with your friend when you could tell that they needed to talk.  And to that grateful, kind look that says back to you "I'll be there for YOU if you ever need ME."  Much of the world makes a virtue of being tough - and that of course has it's uses.  But I for one think that people who strut around and act tough are probably much like those boxers with a glass chin.  I know, and I have no doubt about this - that the people who really are tough are ones who have been through the fight and know just how low the bottom really is.  And they had people around them love them and lift them up to keep them afloat.  I had this.  You can't put a price on it.  You can't put it in a bottle and sell it.  But you sure you know it when you have it...

Neil

 (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.)

Do You Have a Story About Fighting a Schwannoma? An Invitation to Submit a Blog Post

Hi everyone this is Neil - I had a thought the other day that I felt might be useful.  Frequently when new people come on to our Facebook page "Schwannoma Surviviors and Schwannoma Fighters" I invite them to submit a blogpost on their experiences.  I have said to countless people that I had never heard the word "Schwannoma" before my surgeon told me that I had one in my spinal cord in 2009.  In thinking about this I know that everyone wants to "raise awareness" about everything under the sun, including rare diseases and conditions.  That, of course, is a good thing.  But I have always been interested in doing more than just letting people know what a Schwannoma is and what it does to you.  I had the idea that because of the gap in information, that we needed to answer useful questions about Schwannomas and their effects.  I thought that one of the best ways to do this would be to create a blog, affiliated with our Facebook page, that could be used to publish firsthand stories of people dealing with Schwannomas.  It seemed to me that if we put as many stories online as possible, then when other people went searching - feeling lost and confused as so many of us have, then they could find these blogposts and read whatever might be relavent to their lives.

So far, I have invited only those people who are affiliated with our Facebook page - but I also wanted to extend the invitation to anyone, anywhere, who has a story to tell about the way that Schwannomas have affected their lives.  (Et aussi, je parle Francais, si vous avez besion d'envoyer un blogpost, peut etre, pas trop grand - en Francais, sur le sujet des Schwannomas) A lot of the world is on Facebook, sure, but for those of you who are not, I wanted to invite you all to contact me at:

neilmyersart@gmail.com

You don't have to be a poet or master of prose to submit a piece for the blog.  I have posted almost everything unedited, except for corrections on a few misspellings and tiny things.  We want to hopefully get enough stories out there to provide some hope and consolation to people who are or have been struggling with these terrible tumors.  And all stories will be welcome - I have had people contact me whose outcomes after surgery were not the best.  The blog is not intended to highlight only the sunny results - we will tell the story completely and as honestly as possible. 

So please remember that if you or a family member has been affected by a Schwannoma, you are invited to write a post for this blog.  Perhaps in doing so we can alleviate some of the confusion and suffering for those who are newly diagnosed - and know that our own suffering hasn't been in vain if we try, with all our might, to turn it to something good and useful.  Thanks all!

Neil

Visit the facebook page at:  https://www.facebook.com/SchwannomaSurvivorsSchwannomaFighters

Progress Report After Schwannoma Surgery, Four Months Later, by Jamie Dubinsky

 One of my stated goals with our Facebook page and this blog is to get as many stories online as possible from people who are at every stage of dealing with schwannoma tumors.  This includes checking in with those who have had surgery recently to see how their recovery is going and share what life is like after.  My dear friend that I refer to as my "partner in crime" for this blog and facebook page, Jamie Dubinsky, has been kind enough to write a short blog with some information about her condition 4 months after spinal schwannoma surgery.  Thanks to Jamie for sharing! 

Neil

My Self Progress Report (4 Months Post-Op)

It’s been about 4 months and 1 week since my November spinal cord schwannoma removal.  It seemed like I would never reach this point, but I am 95% back to my normal activities.  I still suffer lack of flexibility in my left hamstring and experience slight numbness in the front of my left thigh.  I also experience pain around my surgical site, with sensations of muscle tightness and bone pain radiating to my sacral-iliac joint.  Since my surgery involved drilling of a hole through the L2 vertebrae and the requirement of a year for the bone to heal, I would think this is normal post-op pain. 

Although I am back to my normal fitness activities, I still need to exercise caution with some physical movements.   I absolutely cannot lie on the floor to perform abdominal crunches for the surface of the floor (carpet, a soft mat) is too hard on my back.  If I lie on a hard surface for too long I cannot sit straight up, but need to roll onto my side to avoid the pain in my mid-back.  I was also told “No high impact sport activities for one year” by my surgeon.  Yet, approximately 1 month ago I was running through a snowy field after my dog and I tripped over a hidden tree branch (I guess this constitutes a high impact fall!).  The impact from the fall definitely induced pain and side effects that had previously subsided since November.  Shortly after taking the spill in the field I had my follow up MRI, which revealed no damage to the bones and spinal cord!   

Prior to surgery I could not sleep through a night, but now the only time I wake up through a night’s sleep is if I had too much water before bed!  I could not run, jump or even throw a ball to my dog without searing pain shooting through my body; now I can do all of these things without this overwhelming sensation.  I am 100% happy with my decision to go through with the surgery.  I can finally live life like a healthy human being again!  

 (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.)

The Time Before Schwannoma Surgery, by Vitor De Souza Carneiro

 Hi everyone!  I'm very pleased to share with you guys a blogpost from our 3rd individual contributor to the blog, this one from Vitor De Souza Carneiro, from Sydney Australia.  He has graciously offered to write a bit about his experience with his Schwannoma in the period leading up to surgery.  I'm very grateful to Vitor for sharing his story, and we all join in wishing him well in surgery, healing and recovery.  Neil
  
Five weeks before my surgery. Since I discovered the tumor in my spine (October, 2011) the thought of not having it removed has always roved my mind. When I first heard I had the tumor it wasn’t as bad as the news I had to get it removed by surgery.

The first Neurosurgeon I saw was very straight to the point and dealt with the situation in a very cold manner. I did not receive that well. He was a very reputable doctor but at the time I wasn’t prepared to surrender for such objectivity and coldness.

I went home after that consultation and started a long process of researching about my condition. Nowadays it is relatively easy to access information (which is totally different than knowledge) and draw a map of the situation. And that is what I did. I read about schwannomas, it is growing nature and tendencies, about the procedures, watched youtube videos of surgeons operating on, read peer reviewed articles on the spinal surgery and schwannoma theme. Well, that is the easy bit... It is all there for us to see... But when I look at the bigger picture, it gets complex.

The information I mentioned above is rooted in science, and as we all know (or should know), it has its limitations. The blunt truth is: I am a lab rat and a solid knowledge about tumors and how to deal with them in a effective way is still being developed. This is the reason why we are so scared about dealing with spinal tumors. We have no guarantees whatsoever and our options are very restricted. Unfortunately, it is a gamble, and I can only hope for the best (that is how I feel).

I went on to look at other alternatives. I got to know about people that chose not be operated to remove cancer and are doing fine, people that cured their conditions by changing their diet, acupuncture, herbs, yoga, meditation... and so on. It was very important for me. I really enjoyed experiencing this whole new field of possibilities. Learning about other ways to understand myself and this new moment. I understood that It wasn’t about simply removing the tumor... It was about living, about how to deal with the unknown, about what really matters in my life. It was about self discovery.

It sounds weird but I kinda gotta excited about the whole thing. I traveled to be close to my family and dear friends. I spent time and talked with them. They listened and helped me realize something important: I shouldn’t deny western medicine, I should balance my live and a complementary approach was the way. Complementary in a sense that I will make use of different approaches to deal with the tumor and the outcome of the surgery.
While I was away, I also met this guy in a party. He had had surgery about 2 years ago to removed a Schwanomma from his lower back. He had no leftovers and lived life to the fullest.

Got back home last October (2012) and went to meet another doctor to have a second opinion. He was a bit more opened then the first one. Took the time to explain better my condition and possible problems if I didn’t remove the tumor. Maybe the first doctor did the same thing but I wasn’t prepared to listen. He wanted to operate soon. I said I needed more time because of a few personal issues (work related). We booked the surgery for 6 months later. Before I leave his room I shook his hand strong and looked in his eyes. I said: We doing it doc, we doing it together. He gave me a look like: Weird, this guy is weird. Oh, well...

Now it is getting close. I have been preparing myself. Eating good food, being healthy, doing yoga, running, swimming, loving... keeping a high spirit, enjoying each moment. Sometimes I get scared as well. Is it gonna be all right? I know it is going to hurt. It is a little bit like going on a big adventure. Exciting but scary at the same time.
I am glad I took the time I needed for it all to sink in. I feel a lot more grounded now. This group has helped me heaps and I hope that by sharing my experience I can help other people.

 Vitor De Souza Carneiro

  (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.)

Having a Tumor and Chosing Not to Have it Removed

A couple of days ago I read something that really worried me.  A lady was on Facebook relaying a nightmare story about a back surgery (tumor removal) that went wrong and the terrible events in her life that followed.  That alone wasn't what alarmed me, because surgery IS surgery and outcomes can never be guaranteed.  I had an irrational fear that I would be one of those poor unfortunates that never wakes up from anesthesia - but we all have those kinds of worries the creep in around the time of a major surgery - either our own, or that of a loved one.  But what alarmed me most was a lady who had posted a reply saying in effect "That is why I am never going to get my tumor removed"!  That comment was one which literally had me losing sleep.

Of course we have and should have dominion over our own bodies.  And as the old Rush song goes "If you chose not to decide you still have made a choice".  I recognize that some may consciously decide not to have a tumor removed, and that is their right.  However I wanted to advocate, to all who may listen, in the strongest possible terms - that you should get a full range of opinions on your medical situation before opting for inaction.  If you decide to try to live with your tumor, whatever kind it may be, then do so consciously.  Not out of vague fear or just the inability to confront what it might mean for your life.  But chose this very deliberately - and I would counsel as well that if a majority of Physicians do not agree that you should just leave your tumor in your body - then you should take a long hard look in the mirror and at least consider confronting the option of removal.

I know surgeons are frequently hotshots, and they will jump over one another to be the one to attempt a risky or complicated surgery.  That is the nature of the beast.  You have to be confident to open up another person's body.  I was lucky that, when the time came for my Schwannoma removal in mid 2009, my surgeon was an honest and thoughtful person.  He gave me the best possible assessment of the risks and they rushed me to surgery in four days.  When we chatted on the phone he also made a point to hypothetically tell me what one could expect if I were to continue to try to live with this tumor in my spinal cord.  In so many words, he told me that the prognosis would simply be more debilitation, progressively getting worse as the tumor squeezed what was left of the spinal cord - until a wheelchair became my home with the likely loss of all my lower body functions.  I was already experiencing mind bending pain, extreme nausea, a horribly irritated prostate, and for me the decision was made the moment the tumor was found.  I rationalized that my quality of life was already so low - that even if I got back 50% it would be a drastic improvement.  As it happened, I got back much more than that.  And though I am still a chronic pain sufferer - for sure, I am still VERY glad I went ahead with surgery.  And still very proud of Dr Scully from Northwest Neurospecialists in Tucson - for the fine job he and his team did in my surgery and recovery. 

I remember a great general was quoted as saying "Never take the counsel of your fears."  And I think that is great advice.  When fear takes over our decision making it is not always leading us to the right conclusions.  Some risks are indeed worth taking.  Sometimes the cost of inaction is so high - that a risk must be taken for anything to be saved at all.  I am glad I took the risk - because even my worst days now are much, MUCH better than my best days with the tumor in my spinal cord.

I can only urge people, especially those with spinal tumors like I had - to make sure they have looked at every option before going ahead with either surgery, or trying to continue to live with a tumor.  Reason dictates that these things are easier to remove when they are smaller - and if left alone to enlarge, they have all the potential to continue to lower one's quality of life.   So think hard and get all the information you can.  And whatever you chose, chose consciously - and don't let fear override what is obvious, or what common sense tells you.

 (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 Long Before I Feel Better? Recovery After Schwannoma Surgery

Happy 2013 Everyone!  I hope 2013 is a year of health and happiness - or a year of recovery and strength if that is what's required...

I had a very good question put to me by Shaun on the "Schwannoma Survivors & Schwannoma Fighters" Facebook page; he asked how long it took before you felt normal, or much like yourself, after Schwannoma surgery.  Obviously this is a very good question but a very fraught one at the same time.  People have a HUGE range of results from their schwannoma surgeries.  I have found that my results were probably better than average - so I try hard not to let myself up on any high horse or take too much credit for a fortunate, or better than average, result.  Also where your schwannoma was located in your body, or is, has a great deal to do with it.  Mine was in the center of my back, inside my spinal cord - just below my shoulder blades.

As I told Shaun, it was probably a year before I felt fully functional.  I was able to walk, with difficulty, within a week or two after surgery.  I was able to help take care of our infant son after about 2 weeks.  I did have to use small amounts of medication, and still do occasionally.  About 2 and a half years after surgery, I got up the courage to try jogging and found that I could do it.  I still do struggle with back pain but I have to live with the fact that I have permanent softening of my spinal cord in the area where the tumor was...and that has resulted in pain and discomfort, and some numbness around my stomach.  But I try to keep a positive attitude, with the knowledge that a wheelchair and a very different life could have been waiting for me if I had not had surgery.

I actually just visited my regular doctor this past week and he told me that when people have major surgery they frequently get impatient with themselves, and that they should expect a recovery period of a year or longer.  I found that this was quite true in my case.

Truth be known, if you find that you are in recovery from a schwannoma, you simply can't know exactly how long the recovery will be, and how much function you will recover afterwards.  But keep the lines of communication open with your doctor.  Talk to others on the FB page for feedback and ask around a bit.  The main lesson I learned was to be patient with my body.  It is all too easy just to get angry, frustrated, or dismissive of a body that doesn't behave exactly as it should.  Patience really is a virtue with a long recovery.  Do whatever you can do in the way of healthy living - eat well and get whatever exercise you can.  But most of all be patient.  We all know mountains are conquered one step at a time.

 (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.)