by Neil Myers
Recently I had a rather heated disagreement with a physician who not only did not wish to assist the efforts of the Schwannoma Survivors & Schwannoma Fighters page - and the physician implied that we were attempting to practice medicine "by email" - and that was "dangerous." Now it is quite clear that there are some physicians who, one might say, are of an old school variety. Their considerations are limited only to the clinical settings in which traditional medicine has been practiced for ages - and they believe that the only people capable of understanding what they do are other doctors. To an degree this is, of course, correct. But my mind has long been fixed on the people who fall right through the middle after being diagnosed with a Schwannoma. They have the clinical meeting with their doctor - they learn the particular details of their tumor and their situation. This experience is often a dizzying and very stressful one. Then when they go home and search online - at least before the SS and SF page was created, people found that they had only what details they could glean from their doctor...and online there were only a handful of scattered sources; often comprising dense, hard to understand medical papers. Confusion and stress often would take over in the days after diagnosis. So there was a need for an easy to understand information source.
First of all, it may do well to state what the goals of the SS and SF page have always been - and those goals are to publish as much accessible, easy to understand information about Schwannomas as possible. The articles we publish on our blog are not meant to be dense - they are meant to be readable and within the reach of almost anyone who has been diagnosed with Schwannoma. And these articles are meant, in all cases - to be based on conclusions supported by conventional medical science. Keeping our ties close to accepted medical science is the only way that I have felt that we could deliver helpful solutions and information to people who really need it. (And I vow that I will correct or modify any article that requires it - should better information become available)
The other part of our commitment was to tell our personal stories by way of informal, first person accounts and case studies. We have taken this course in the belief that when people read stories of others who have been through something like what they have - there is a great deal of solace and relief to be found in it - a sometimes immeasurable x factor which is emotional relief. You read something and you think "Ah! I'm not alone..." These first person stories from survivors are not the kind of cold, hard clinical data that is the domain of most of medical science. But they speak to the experiences of people who are going through this process - they humanize the process and allow people to better understand both the physical and mental stressors. Illness of any kind has a mental and emotional component - and we can gain great insights from people telling their stories.
And as I have worked on this page I have sought out, time and time again to bring in what I would call the "expert witnesses" to our situation - namely, the neurosurgeons who are on the frontline of battling Schwannomas and Schwannomatosis. As I have said before, it is because there is a lot of misinformation out there on the internet that we need the kind of solid information that only trained and experienced neurosurgeons can provide. That is why we speak with doctors as often as we can. Our medical science informed approach is why doctors from such esteemed institutions such as Columbia University, Stanford Medicine, Vanderbilt University, Johns Hopkins, and USC Keck - among others, have offered their priceless assistance. We are so deeply grateful for doctors who embrace the new information mediums in order to help more people than ever before. This is the future - and we must come to grips with it.
And let me be clear about this; I bring seek to bring doctors on board ( and I have a neurosurgeon advising me personally on medical issues that are far above my head ) because I have no pretensions of playing doctor. I am, by profession, a successful artist! But I have embraced my role of trying to assist and guide people who are on this often brutal schwannoma journey. And when I founded the SS and SF page in late 2012, no page like it existed. Now the Facebook group has over 1,400 people from around the world. This morning when I checked the number of visits to our blog, it topped 55,400. So the one takeaway is that something like our page was needed. Something was needed, between the cold clinical realities of the hospital - and the loneliness of searching the net in vain, and finding only dense - sometimes hard to understand medical literature on Schwannomas. There was a gap where a simple, easy to understand information source was needed. We have attempted to fill that gap. We do not attempt to replace the verdicts of a trained physician. In fact, at every possible chance we bring in trained physicians so that they can state the case as they know it - thus, hopefully, getting the most solid information out there as we can.
When I have talked about myself, I refer to myself as a "patient's advocate." I myself had a schwannoma in my thoracic spine, and I took away a great deal from that experience. And for four solid years I have been reading the cases and pleas of those who have been diagnosed with Schwannomas and are struggling to find out the best course of action. A million times I have said things such as "I am not myself an M.D." or "...maybe you want to ask your doctor about..." or " A neurosurgeon told me...". I have tried at all points to be measured and extremely careful in what I said to others. I have submitted any comment of mine to revision and correction. And I make it a point never to speak beyond my own certain knowledge - or to contact my neurosurgical advisor on urgent medical issues that are simply beyond my comprehension. In short, I have always tried to understand the limits of my own knowledge on Schwannomas - but at the same time, I don't hesitate to assist people if I feel they should explore a certain course of action that might lead them to a better outcome - and one which is supported by medical science. And - last and most importantly of all, I have often said that if any advice of mine is in contradiction to the advice of your doctor - defer always to you doctor for all major medical decisions. He or she is the person always in the best possible position to understand your medical needs.
In fact, I remember the two main instances where I contradicted a doctor. (Two instances in four years - and replies to untold hundreds of direct messages) One was a case where a young man was being told that after his spinal cord schwannoma was removed he would be pain free. This was an overreaching claim - most people who have spinal schwannomas successfully removed will experience a significant, and sometimes almost complete reduction in pain. But to say from the start "You will be pain free" is not wise. Many of us are not completely pain free, even after total tumor removal. Two other doctors confirmed this when I ran it by them. One told me "A doctor should never say that about a Schwannoma..." (i.e. that removal would guarantee a person would be 'pain free' ) The other case where I contradicted a physician was when a doctor told a lady who had a known schwannoma that "Schwannomas do not cause pain." This is just plain false - and though a rare few people can have a schwannoma and be asymptomatic - it is very well known that Schwannomas can be quite painful. I don't assume malice on the part of the physician who told the lady this - but only that he may not have seen enough Schwannomas in his career to know that they can be extremely painful.
It goes without saying that the neurobiology of tumors is extremely complicated. It goes without saying that neurosurgeons are very highly trained, and very remarkable individuals who carry people's lives in their hands. On the molecular and biological level, life is so dazzling and complicated that it can, in all its guises, leave us in awe.
But I am stuck with one predominant idea - and that is this; just because something is complicated and hard to explain - it doesn't mean we can't say anything about it at all. There most certainly is a role for support groups and information gathering efforts. In the early days of the SS and SF page, I said to people that I only intended that this page be a stopover on the journey - perhaps one spot where you can linger, read some articles, and get some helpful information. We have never pretended to be doctors - we are patients and advocates for patients who are being advised by doctors. And as support groups go, I feel that is the best possible scenario. Clearly, the doctors who have so graciously assisted us have done so because of my pledge to them that the SS and SF page would only throw its support behind accepted medical science - and that is a commitment we maintain.
Most of all, I do this because it has been made clear to me that our FB page and blog bring great relief to stressed out people who need to talk to others who are traveling in the same boat as themselves. And in our boat, we mean to set our course on the advice and wisdom of doctors who have assisted us, with all their years of expert training and experience. That is the only way to make a safe trip - and the only possible way to come ashore on the other side...safely. We give our sincerest thanks to those wonderful doctors who have helped us through this painful and confusing journey.
Thanks my friends. For my part, I do this for all of you... :)
Neil
