Sailing the High Seas - The Crossing to Recovery, by Vitor De Souza Carneiro

(Here is a new post by Vitor De Souza Carneiro, a great friend of the "Schwannoma Survivors" Facebook page and blog.  He just recently had surgery to remove a Schwannoma, and was kind enough to write a bit about his experiences post surgery.  Thanks Vitor!  Neil)

And the Big Day came. I was feeling great the day I went to hospital to have the operation. The main reason was that I had managed to organize almost everything before hand so I could come back to what I call a “Recovery Temple”. The day before surgery was also special. I spent all day with my wife, enjoying, not even thinking about surgery.
I know it sounds weird, but I was actually excited about the whole thing. Finally a major mile stone on the healing process: The removal of the tumor. My neurosurgeon came into the room and we had a nice chat. I told him I hadn’t felt any pain, what so ever, for the last 3 months. With a tumor the size of mine, that was pretty unusual and he took the time again to look at the images and discuss the importance of the operation. I really appreciated that. The last thing I told him was: “Doc, you got my back!”
I knew it would be straight forward, in and out. Done. My wife said it was the 5 longest hours of her life (4 hr of actual procedure). When I opened my eyes I felt like I had been chopped in half by a chainsaw. But that only lasted a few seconds and they gave me a nice relaxing happy something that had me feeling ‘no worries’ for the next 48 hrs. The doctor was very happy with the procedure. They managed to remove all the tumor and there was no major complications. He even showed me pictures of the procedure while I was in ICU.
I spent a total of 7 days in hospital. Bloody long time, but not really. I knew that every second there was important. I was being looked after so well by all the staff. There were, as expected, a few small challenges though. I had really strong headaches and was feeling nauseated and vomiting for good 3 days. Then, they wanna get you up and going as quick as possible. But because my body was still producing the liquid that soaks our nervous system, I had this massive headache and my eye balls felt like they were going to pop out.
That is when surrender and patience come into play. Even though having a major spinal surgery is not the most smooth experience one can have, if you are patient, things will stabilize again. Well, the days went by and the so awaited discharge came. Quick note: Here might not be the place to express my reflections on Patience and other philosophical question about life, but feel free to write me and we can exchange ideas.
It felt really good to be home. Special friends came for quick visits and I was slowly getting my bearings. But once again, I had to surrender and accept. For someone hyperactive active (when I say hyper I mean suppa duppa Hyper active) to be so deprived of free and easy mobility is a major issue. Again, patience and relearning. I have to be really respectful and mindful of all my movements and almost everything needs to be calculated. After a while we just figure things out and adapt. So, in regards of the practical sides of things my wife is being superb and we are making things happen, very slowly. The boat is just Sailing by...
But it didn’t take long until I started to see a few nasty looking clouds forming in the horizon. And before we could do much the storm hit us. I used to sleep like a sloth, not anymore. My bowel used to function like a swiss clock, not anymore and I used to have a good humor, not anymore. That hit us day 2/3 at home. This is the message I sent my friend Neil of how I could better describe how I was feeling:
“We are sailing the storm. The sea is a bit rough, bumpy and gusty but we got the boat under control. The forecast looks good. For the moment we can only keep steering and getting used to the "roughness".Will see a good Physio tomorrow. “
And sure enough the storm passed. Through natural medicines we manage to get my guts working again (gosh, that felt good) and reestablish a decent sleep. But I know that this recovery is like a ocean crossing: we might know the prevailing winds and currents but anything can happen, any time. So, we take as it comes. Sometimes uncomfortable, sometimes magic like a beautiful sunset in the middle of the Atlantic. The most important thing is that I am learning heaps about myself, about life and about LOVE.

 (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.)

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.)