We Don't Play Doctor - But We DO Have a Role

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

Schwannoma Case Study #9, Lauren Findlay and the Story of Her Trigeminal Schwannoma

Welcome to Schwannoma Case Study #9!  This one features our dear friend Lauren Findlay and her story of battling a Trigeminal Schwannoma.  (In the most basic definition, Trigeminal Schwannomas affect a major set of nerves running toward the face, jawline, etc) This kind of Schwannoma is one of the less common types, but I seem to get a lot of questions about it - so Lauren was kind enough to want to help others by sharing her story by way of one of our case studies.  We thank Lauren very much for her time and wish her all the best in her recovery! - Neil

____________________________________________________________________________

1)  How old were you at the time of your diagnosis?

I was 29 years old, but i first noticed a small lump in my jaw area when I was 25 years old. I had it checked and was advised at the time it was just a swollen gland or excess tissue.

2)  Do you have any history of Schwannomas in your family?

No family history. I did work in a Dental Practice from the age of 17-25 working alongside X-ray machines/radiation and there has been a link/research into schwannomas from radiation exposure.  

(*Note from Neil; web MD lists radiation exposure as a possible link to a certain number of Schwannomas - and there are genetic conditions like the more serious condition of Schwannomatosis that predispose a person towards Schwannomas.  Other information sites list the causes of Schwannomas as unknown.  However a sizable number of the members of our group did anecdotally relate some experiences of radiation exposure - though this was an unscientific poll of our group only)

3)  Where was your Schwannoma located?  And what were the symptoms that lead to your diagnosis?

I had found a small pea sized lump in my lower left jaw area 4 yrs ago causing me no symptoms or pain and at the time I was advised it was nothing to worry about. In November of last year I woke one morning to swelling around the area, tightness of the area and noticed the small pea sized lump had grown to the size of a grape. I had also started to experience vertigo/dizziness and I had severe migraines building up. I was on a pain killer called Tramadol for the migraines and another for the vertigo but I now forget what this one was called. I went to my Dentist with it being in the jaw and he referred me on to a specialist at the hospital where I had an X-ray taken (not much was seen on the x ray), I then went in for a Biopsy but with the tumour being like a hard capsule they struggled to get a decent sample and as expected the results came back inconclusive. I then had an MRI scan and it was after this that I found out it was either a schwannoma or a neurofibroma (during surgery it was confirmed as a schwannoma).

I then met with the surgeon/specialist who was going to do the removal of the tumour for me. He advised of his experience over the years but did mention he hadn't seen anything quite like this before and did consult with his colleagues on it. But I felt I was in great hands and was extremely comfortable for him to carry out the surgery.  

From being referred to the hospital to being diagnosed and then to having the surgery carried out I was 7 months in total. 

4)   Could you describe, in whatever detail possible, what kind of surgical treatment was performed on your Schwannoma, and if you would consider it successful? (Or describe what you may know about the surgery that may yet be performed, if you haven't been operated on yet)

I was advised of the possibility of nerve damage to my facial nerve. If the schwannoma was inside or entangled in this nerve it would need to be removed and they would take another nerve from my neck that gives feeling to the ear and graft that in its place. This process could take several months to a year to work and could result in my lip at the left hand side "drooping down", and leaving me with no feeling down this side. Even if he didn't have to remove the nerve, I could still have ended up with damage or paralysis to this as nerves are extremely sensitive and stretching and moving of them can cause the same problems. I was to be cut from the top of my ear down to my midline neck in order to give enough access. The prospect of both upset me as I worried my new appearance would upset my 5 year old son but I knew I had to have this removed as the dizzy spells and migraines were unbearable and also, removal was the only way they would be able to 100% confirm it was a benign tumour (in most cases these tend to be!).

I went in for surgery 8am on a Tuesday morning , and was in theatre by 9am, out for 12.15pm in the recovery room. I woke to some pain and was given an injection to ease this aswell as another for the sickness I was feeling (this was either a reaction to the general anaesthetic or the morphine I had been given). The rest of that day is a bit of a blur. But I do remember when I got back to the ward I requested a mirror to have a look at the "damage". I was actually so pleased with the end result. Although the scar down the side of my face was a bit upsetting the surgeon had managed to "lift" the facial nerve and remove the tumour without causing much damage. The stitches were placed inside/under the skin and so they were not visible. I also noticed I had bruising along my forehead and the beginning of a black eye. I'm still unsure if this was down to some sort of clamp they had to use to hold my head in place during surgery or if it was just pressure as they were working below this area.

Eating was difficult for the first while as my jaw was swollen and tender and felt very fragile.

Two weeks on and I look almost back to my usual self again apart from some slight swelling still to go down and the scar down the left hand side of my face. It's healing well and fast though and in no time it should just be a thin line hardly noticeable. 

I still suffer with migraines although not as bad and I am still feeling quite dizzy. I have been advised this is due to them working in and around the inner ear causing me to be off balance. My employment consists of me driving quite a bit and spending periods of time on my own in empty houses/flats so I am still off although if I had a more office based role surrounded by others and with no driving I feel I could be thinking about a return to work soon.

5)   Having gone through the experience, what do you think are the most critical questions for someone to ask their doctor about surgery and treatment of this kind of schwannoma?

Best advice I could give for this one would be to make a list before you go for your appointment and go through that list one by one with your doctor/surgeon. 

6)   Can you describe what the recovery process was like for you – if you feel you  have made a positive recovery…and what things you have done that have been of most help to you?  (Also, you are free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet)

I am recovering very well 2 weeks after surgery. Although not confident to drive distances etc yet due to the dizzy spells and also the stretching of my stitches down my neck I am up, out and about going for plenty walks/fresh air which I find has helped my mood as being stuck in the house on your own can leave you feeling sorry for yourself.

 My scar is fading fast and swelling is very minimal now.

I had been keeping on top of medication given to me as pain relief from hospital but I am now completely off them and all I take is something every now and again for my migraines and anti sickness tablets for the dizziness. 

7)  Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors)

Other than driving just now I am able to do everything the same as before. I have no regrets about having my surgery. 

___________________________________________________________