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.)