The Inspiring Story of Luke Farrell, Pro Baseball Player & Schwannoma Survivor

Photo: Luke Farrell on the field with the Cincinnati Reds...his Schwannoma scar visible along the top of his neck.  

Awhile back, a friend of our Schwannoma Survivors page, Michelle Santagata, told me about an exceptional young man by the name of Luke Farrell.  Luke is a professional baseball player who is himself a survivor of a brachial plexus Schwannoma.  Michelle's own son Craig, also a baseball player, had greatly appreciated the story of a top level baseball player who had faced down the exact same kind of Schwannoma that he is now dealing with.  Connections were made and I was fortunate to hear back from Luke and he kindly agreed to do a short 3 question Q and A for us.  We greatly welcome Luke's amazing story - and we are so grateful to the example that he provides for Schwannoma survivors everywhere.

So, for all those people who are fighting a Schwannoma right now - people who are wrestling with fear and anxiety for their future, we are proud to offer this fascinating and very positive insight into the experiences Luke, as he wrestled with a Schwannoma, and fought his way to health and a pro baseball career.  Our thanks to Luke for taking some time to speak with us!  - Neil

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Questions:

1)  Being a top level athlete requires a great deal from the human body.  Many of us would love to know, what it was you felt (before removal) as you became aware that you had a Schwannoma?  Simply put, what was it like to be a baseball player who finds he has a Schwannoma?

When I first found that I had a tumor I was told that we couldn’t accurately determine what it was without surgery. A biopsy was not possible and there were no other indications that left my doctors with the ability to make a diagnosis. Seeing the scans and hearing my doctors tell me they weren’t sure what it was that I had made for some really frightening, uneasy days. My plans to head to college and continue playing baseball  just weren’t possible at that time. I quickly learned that a person’s health is the number one priority. It didn’t matter that I had big dreams for my future or that class began in two weeks. Everything else sort of stops and you’re left to face what’s  in front of you. I’m thankful that I had people caring for and supporting me as we faced it all head on. Once the surgeries and diagnosis were made, then I could shift my focus to my recovery. Those dreams I had before all this craziness were still intact, they were just made maybe a little more difficult to achieve. I had lost about 25lbs and was in no shape to compete against Division 1 teams. But that was my goal and I was going to do everything I could to make it happen. I chose to believe that everyone is faced with their own set of challenges and this happened to be one of mine. When my schwannoma returned two years later, the process was similar. Absolute shock and a tidal wave of emotion, then trying to shift all my focus on solving this problem and beating it. In many ways, the desire to get back to baseball and school gave me a ton of determination to get through this time. 

2)  Your story about how bravely you faced surgery and recovery are well known ( we will provide links to articles telling the story ).  I would be very curious to know, what was in like to be a baseball player on the road to recovery from a Schwannoma?  What were the strategies you used to stay physically and emotionally strong through this process?  

Recovery presents a lot of challenges both mentally and physically. In my head I still had a picture of what I should be able to do and the way my body should work on the field. Learning and accepting those limitations wasn’t an easy process. But, I was told that they could be made temporary and I could return to almost completely “normal” if I followed my physical therapy. At that point things were back in my control, which felt great after so much wasn’t for the last few weeks. I approached therapy with the same dedication and effort that I tried to put forth in baseball. In that way it was therapeutic both physically and mentally. 

3)  Lastly, I said to you previously that I had known a great many people who have accomplished fantastic physical and mental goals after having endured Schwannomas.  A friend of our page recently completed the London marathon in very competitive time after enduring a spinal Schwannoma.  But you are the first professional athlete that I have spoken with who has had Schwannoma.  Being in the unique position you are, what are the words of hope that you may like to offer everyone from young athletes, to average people - moms, dads, and friends who are struggling with Schwannomas?  

First, I’m thankful that you reached out and introduced me to this group. Having such a rare tumor has made it difficult to communicate to people exactly what it is that I have. At times that can be very alienating, something I’d think others with a schwannoma have felt. To be able to share and learn about this diagnosis with others who have been affected is really important. 

If I were to give any advice to someone reading, it’s to try and take control of your fight as much as possible. Once I got over the initial shock, I did what I could to learn about what it is that I have. With the help of my family, we asked question after question of the different doctors we met until I felt comfortable moving forward. It forced me to have really candid conversations and make difficult decisions at a young age. I also knew I could control my attitude and my determination. When my first surgery failed I felt total despair. To wake up and hear that a 10-hour operation left me no closer to beating this thing is a feeling I don’t have the words for. But in my mind there was never another choice other than to move forward. Fortunately, my second procedure shortly after worked. When I learned my tumor had completely regrown just two years later, we went through this process again. We asked all our questions and made a plan. This time I was faced with radiation, but I wasn’t going to just stop and let this define me, I had to move forward.  As of a few weeks ago I’m proud to say I’ve been healthy for 6 years. Each year when I go back for my scans I feel the same anxiety and the same fear. But I do my best to control what I can and go from there. Looking back, these moment have really shaped me and in many ways ended up having a positive impact on my life. 

                                                 Photo: Luke with Dr. Jay Loeffler 

Articles about Luke:

http://www.kansascity.com/sports/mlb/kansas-city-royals/article137962343.html

http://www.espn.com/mlb/story/_/id/20796689/luke-farrell-cincinnati-reds-first-pitch-team-managed-father-mlb-game

Follow Luke on Twitter at:

@elFarrell52.   https://twitter.com/elfarrell52?lang=en

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Case Study # 33. Dennis Wright and the Story of his Trigeminal Schwannoma & Radiosurgery

Hello everyone!  We are pleased to present to you our 33rd Case Study, this one the story of our friend Dennis Wright and his Trigeminal Schwannoma.  Trigeminal Schwannoma is a kind of subject that we certainly needed more information on, and we are very grateful to Dennis for taking the time to tell his story.  Which is an especially useful one, because he had Gamma Knife Surgery on his Schwannoma - something we also needed to know more about.  We hope you find it useful - Neil 

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Case Study Questions

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

63 (living in Norwich, UK)

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

None 

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

My schwannoma is located on the trigeminal nerve within Meckels cave and affects all 3 points of the right hand side of my face (V1 Opthalmic, V2 Maxillary and V3 Mandibular). 

I was enjoying a holiday in Spain when in the middle of September 2016 I starting getting some “pressure” behind my right eye and some numbness down the right hand side of my face. Over the next 6 weeks the numbness progressively spread to all the right side of my face from just above my eye to just below my lip and also inside my mouth including my tongue. I was now getting constant pressure around my eye and the “pins and needles on the right hand side of my face were now getting very uncomfortable. We telephoned my doctor and he advised me to go to the hospital immediately When I returned to the UK. I went to the hospital on the 12^th November and they gave me an ECG as they thought that I had had a stroke. This was proved incorrect and I was then referred to a Neurologist. On the 16^th November the neurologist thought the problem was migrainous but referred me for an MRI scan just in case. By this time I started to get some horrific pains in the inside of my eye. These came on without any notice and lasted anywhere between 1 and 5 minutes. By this time my medication of Gabapentin had been increased to a maximum daily dose of 3,600mg to try and combat the pain. My first MRI scan in early December showed “an unusual appearance” and I was referred for another MRI with contrast. I was also prescribed morphine as the pain had increased. After one week the dose was increased as it was ineffective. The second MRI found a well defined mass which was probably a schwannoma and was, thankfully, thought to be benign. I was urgently referred to neurology. I was told that the tumour had also increased slightly in size. Zomorph was prescribed to supplement morphine as pain was not subsiding. The local hospital told me they couldn’t deal with my problem and that it had been referred to Addenbrookes, the specialist hospital in the UK for tumours in or near the brain. In February I had a meeting with the head neurologist at Addenbrookes who told me that due to the location of the schwannoma it was too dangerous for them to operate in the normal ways. Therefore he was referring me to “Gamma Knife Surgery”also known as“Stereotacic Radiosurgery”. 

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)

Gamma Knife surgery was performed on me on the 23^rd March 2017. Strangely despite what the name suggests it is not an actual knife at all. Following an MRI on the day to determine the exact location of the schwannoma a metal headset, which looks like a colander, is screwed to your head. You are then placed into the machine that looks exactly like a MRI scanner. Then a single beam of radiation is split into approximately 194 very narrow beams which are directed through the “colander” and converge in the exact centre of the tumour. The procedure is incredible in it’s accuracy and has the added advantage in that it is non intrusive. Without this procedure my schwannoma would not have been treatable. I was admitted to the hospital at 07:30 and left at 14:00!

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?

In my experience most local doctors will not know enough about this procedure to be able to explain it to you properly. You should insist on getting your neurosurgeon to explain it to you step by step and in a way that you will fully understand. I would strongly advise you to make the most of this time and not to leave until you fully understand the procedure and the pros and cons. Obviously you will need to ascertain from the neurosurgeon if this is the only form of treatment for you and the reason why. 

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 was extremely tired for a few days but that was to be expected due to the amount of radiation I was subjected to and also the strong painkillers I was still taking. After that I do not think the actual procedure had any effect on me. My only issue has been that I still need the Gabapentin, which has made me feel drowsy, but I have been weaning off the tablets which has certainly made me feel much better. Obviously with any sort of tumour it is difficult to know what effect the surgery has had as you can’t actually see anything. The positive my family and I were grabbing hold of was the simple fact that if the surgery had not worked then I could not possibly reduce my painkillers. A simple statement I know, but one that is oh so true! I am pleased to say that 3 weeks ago I saw my neurologist after I had an MRI in the morning and he confirmed that the surgery had been successful. Success with this type of procedure is first and foremost to stop the tumour from growing. From there on it is a very slow recovery process, much as the Schwannoma is a very slow growing tumour. I still get a lot of “pins and needles” on the right hand side of my face over the 3 regions but it is not comparable to what I had prior to the procedure. I have to see him annually to check the progress and then, hopefully, every 3 years or so 

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)

I am very close to living a full life, even enjoying a beer for the first time in 9 months. I am still on some Gabapentin and Tegretol but hopefully if all goes well I will be off them in the near year. My wife and I are returning to Spain next weekend and we have just booked to return to Thailand in January. As we had to cancel our holiday there this year we have even treat ourself to fly Business Class. Life feels good and it is all down to my neurosurgeon, Mr Ian Sabin, and Gamma Knife Surgery.

Dennis Wright

Email: djwright1974@gmail.com

Case Study 32, Nadia Oshry and her Experience with Vagal Schwannoma

Hello all!  Welcome to our 32nd case study, this one from our friend Nadia who details the experience of having had a Vagal Schwannoma.  We sincerely thank Nadia for being willing to write out the details of this difficult experience.  And we hope that this study will be useful to those of you who are dealing with Vagal Schwannomas. - Neil
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1)  How old were you at the time of your diagnosis?

32

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

No known history of Schwannomas in my family.

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

I had no specific symptoms. In fact, the way I was diagnosed was completely random. I visited a Gastroenterologist for some unrelated stomach issues, and while he was conducting a physical exam on my thyroid, he stumbled across a hard lump in my neck. The actual diagnosis of the Schwannoma took 2 months. My Gastroenterologist referred my to an ENT Surgeon. He sent me for a number of initial tests, including blood tests, an ultrasound, ultrasound guided FNA biopsy, followed by a CT scan, chest X-ray and abdominal x-ray and finally an MRI. The additional tests were largely to rule out lymphoma. Unfortunately, my first FNA was inconclusive, however the MRI indicated a likely Schwannoma, sitting on either my Vagal Nerve or Sympathetic Nerve and was also displacing my jugular vein and cartoid artery. It was ~2.5cm by 2cm in size. The ENT Surgeon's recommendation was to wait for six months and monitor via MRI. 

However, I opted for a second opinion. Given the positioning of the tumour, I consulted with a Vascular Surgeon. He sent me for another biopsy; this time a CT-guided biopsy by an expert radiologist. The biopsy confirmed that this was a nerve tumour, but could not decipher whether or not it was malignant. By this time (~2 months from initial ultrasound), the tumour had already grown and the surgeon recommended surgery. His reasoning was that: (a) the tumour had already grown and it was unclear whether/not it was malignant (although he believed it was likely benign), (b) these tumours have a tendency to erode nearby structures and given the proximity to my cartoid artery and jugular, it was risky to leave it and (c) if the tumour were to grow by another 20%, the surgery would become increasingly complex and risky. I opted for surgical removal.  

 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)

My surgery was completely successful. It took 2.5 hours to remove the tumour in its entirety (even though they had anticipated a 4-6 hour surgery). During surgery it was discovered that it was a Vagal Schwannoma. My surgeon managed to save the nerve, and had to make minor repairs to my cartoid artery and jugular vein after removing the tumour. 

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?

 1. Asking the surgeon how many times they have seen similar cases and operated on a schwannoma. The ENT I went to said he had last seen one of these 20 years ago, and he had to consult with multiple experts to get a diagnosis and to decide on a plan of action. Those were both red flags for me.

    2.  Asking about the potential risks of surgery vs the risks of a more conservation approach of "watch and wait". Understanding the potential risks and side-effects are important to make an informed decision.

  3. Asking about the recovery process e.g. how mobile will you be? How long after surgery will you be able to eat? How long will you be in hospital? I found these helpful to plan for the surgery and post-op process. 

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)

My Schwannoma was removed 3 weeks ago. I spent three days in high care after the surgery. Amazingly, I could already eat solids the day after surgery. The next week was the toughest part, mostly because of the side-effects of the anesthetic, morphine etc. and the sheer exhaustion of physical activity (even just sitting on the couch chatting to friends). In the last two weeks, I've felt a bit better each day. I'm slowly starting to exercise again and get back to normal life. However, there have been two lasting side-effects from the procedure: a hoarse/weak voice and coughing. My surgeon referred me to a specialist ENT at a Voice clinic. After some tests, he discovered that one of my vocal cords is paralyzed, and it seems that the disruption of my vagal nerve has caused the coughing. I'm starting medication soon, as well as rehab with voice therapists (including electrical stimulation) so I'm hoping I'll be back to full strength in the coming months.

The things that have been of most help are:

1. Staying with my family for 2 weeks post surgery. Although I wanted to go back to my own space, it was extremely useful to have people to help shop, cook, drive me to follow-up appointments and generally assist me.
2. Seeing a physiotherapist. I was fortunate that my surgeon has a fantastic physio who works with him, and who helped me in-hospital with my back and neck muscular pain. She has also assisted in some rehab post-op which has really increased my mobility and re-integration into my normal life. 
3. Rest, rest, rest. Although the temptation is to rush back into normal life, I took two weeks off work and spent alot of time sleeping and resting. When I returned to work, I worked for half-days to ease back into it. Don't underestimate what a toll surgery takes on your body!

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If you have a Vagal Schwannoma and wish to write her, Nadia's email address is: nadia.oshry@gmail.com

Case Study # 31, Allison Crouch and Her Schwannoma of the Left Lung

Hello everyone!  Welcome to our 31st Case Study - this one the story of our friend Allison and her experience with having had a Schwannoma in her lung.  Among our group members, this is one of the rarest kinds of Schwannoma and we are very thankful to Alison for telling her story.  We hope you all find this helpful and interesting reading.  - Neil
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1. How old were you at the time of diagnosis?

8 years ago, I was diagnosed with a cellular schwannoma of the left lung. I was only 26 years old. I had just gotten married and bought my first house. It was a complete shock as I was completely healthy and had actually just ran a 5-K the weekend before diagnosis.

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

My grandmother seems to think there is a history of benign tumors on her side, but no concrete evidence that these are schwannomas. Also, Neil said on the FB page recently that there is some evidence of radiation causing schwannomas, and I worked at a vet hospital for about 4 years in high school/college, so I guess I could have been exposed.

3 and 4 , Where was your Schwannoma located?  What were the symptoms that led to your diagnosis?  (She also answers what is normally the 4th question in this narrative - addressing the description of the surgical procedure. )

February, 2009, Savannah, GA: It was just another ordinary day, and I was at school, teaching in my sixth grade language arts classroom. All of a sudden, I was hit with crushing, breath-stealing chest pain. I couldn't catch my breath, there was a stabbing pain every time I moved or breathed in. I left my students with the special ed. teacher and ran as fast as I could to the school nurse. I told her I couldn't breathe and thought I was having a heart attack. She told me I was probably having gas pains, but I calmly explained to her that this was an emergency and please call my husband. He came immediately and took me to the ER.

I was hooked up to an EKG which came back normal. I was then given a chest X-ray. We didn't know at the time, but my chest cavity was so filled with blood they couldn't see anything, so I was referred for a cat scan. Upon viewing my cat scan, the ER doctor told me I had a massive mass in my chest that was more than likely advanced stage lung cancer. I was admitted to the hospital and met with a pulmonologist. My pulmo had to wait until the next morning to do a laryngoscopy and fine needly biopsy, as I was understandable anxious and freaking out and my BP was through the roof. The next day, the laryngoscopy couldn't visualize the mass and the biopsy was sent to the lab. It would be quite a few days before results came back from pathology. In the meantime, my mom flew in from Vermont and I was scheduled for emergency surgery the following morning.

My surgeon was phenomenal, Dr. London of St. Joseph's Candler, basically going in blind having no idea what this tumor was. I had to have two ribs surgically broken in order to get my schwannoma out--it was the size of a foam Nerf football. The tumor was completely encapsulated and Dr. London was pretty sure he was able to get all of it. It was completely inside my left lung and pressing on a lot of major vessels. In addition, my surgeon thinks the 5k I did the previous weekend irritated my lung to the point that it began to fill with blood--I needed a transfusion during surgery because I had lost so much blood. Before the chest pains that terrifying morning at school, I had had not one single symptom from my schwannoma until that point, and doctors estimate it had probably been growing inside me the better part of 15 years or more...and I had no clue.

I spent 2 days in the ICU and 8 total days in the hospital recovering. The day before I was discharged, the doctor on call finally came and told me what kind of tumor i had: a nerve cell schwannoma. He also told us it was benign. We all burst into tears because up until this point no one knew or could tell us definitively what the thing was! It was a HUGE relief! Going forward, I had to do some light PT to get my left lung back to normal capacity and strength but I was back to work about 2 weeks after getting out of the hospital. I do have a large scar from the surgery, a smaller one from my chest tube, and some loss of sensation along my left rib cage to below my left breast...but overall I am extremely lucky and fortunate. I follow up with my pulmonologist for a repeat chest x-ray every 3 years (at first it was every 6 months, then every year, and now every 3) to make sure it doesn't reoccur. I was told this type of tumor has a 3-7% return rate.

Very recently (within the past few months) I began seeing a neurologist for the first time, unrelated to my original schwannoma but because of other symptoms and acknowledging my history. I had an MRI and was diagnosed with a prolactinoma of the pituitary gland. I also have a small tumor in the hypothalamus region of my brain. My neurologist is not concerned about either abnormality and is confident they are not schwannomas. I have no neurological symptoms.

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?

The most important thing to make sure is that you have a pulmonologist in addition to your neurologist. Because the type of schwannoma I had is basically symptom-free, it is crucial to have thorough follow-up care to make sure the tumor does not reoccur. Also, my pulmonologist was so fascinated by my case (he could only find 9 similar tumors in literature) he took it to the national tumor board and got input and recommendations from specialists across the country, which meant that even in small Savannah, GA I was getting the highest quality of care. Also, just ask lots of questions. It was a scary time, but mine was more of an emergency situation as it had to be removed immediately, so I didn't really have time to do research or ask questions. I would also recommend repeat and follow-up MRIs going forward into the future to make sure the same or future tumors don't occur.

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)

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)

(Below, Alison addresses questions 6 and 7 together )

As I mentioned above, the recovery process was pretty easy. In the hospital, I did have a chest tube and a catheter, but once discharged my life was pretty much back to normal. I had to do some light exercises to get my lung capacity back to normal, but I was young and healthy and bounced back pretty quickly. I am 100% symptom-free and back to normal, other than a little bit of numbness around my surgery scar. The most help to me was my mom moved in with me for a little bit to help around the house while I was recovering so I could really relax and get better. My parents and my husband and everyone I worked with were so supportive and wonderful through the whole process.

If you have one of these tumors and are suffering in daily pain, I can only tell you my own experience: better out than in! No one should have to go through life in daily pain if there is a surgical solution. If you have a lung schwannoma without any symptoms, and are in a wait-and-see type of situation, again, I can only speak to my own experience: it went from nothing to an emergency really quickly. The amount of pain I felt and the shortness of breath I had made me positive I was having a heart attack. It was the scariest pain I have ever felt, even including recovering from surgery when I had to have an epidural and intravenous morphine. So mine HAD to come out... just don't let it get to that point!

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You can email Alison at: allisoncrouch11@gmail.com

Case Study # 30 Nicki Southwell and Her Rare 6th Cranial Nerve Schwannoma

Hello everyone!  We are pleased to bring you our 30th case study - this one a Q and A with our friend Nicki Southwell.  Nicki describes her experience having an extremely rare 6th cranial nerve Schwannoma.  We thank Nicki sincerely for taking the time to tell her story, even with the struggles she continues to face - and we wish her the best to strength and healing in the days ahead. - Neil 
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1)  How old were you at the time of your diagnosis?


59


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


No


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

I was admitted to hospital from A & E with an excruating headache.
Rushed through for CT Scan which resulted in having another one with dye
injected.  They knew I had a tumor.  Transferred to bigger
hospital with a neuro department.

MRI confirmed that Schwannoma was growing out of/round C6 in my brain stem. (* Commonly referred to as a 6th cranial nerve Schwannoma )


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 had a very lengthy operation to remove as much as possible around C6.
Not sure at the time if all of it was removed, but all that could be
seen.

A follow up MRI and appointment shows that something is still on C6.  If
it is more tumour it will grow, could be a lesion and it will remain as
is.  Operation appears to have been a success at the moment.


 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?

Obviously you need to be certain that you feel they know what they are
doing.  Side effects:  I did not think I would get hearing loss as well as
diplopia.  I do and am trying to get appointments for help, but need to
get used to how things are.  Medical team very excited about it being so
rare.  I am glad some-one is pleased.


 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)

It is quite early on in my recovery.  I have learned about the process
through a local charity with support, and what I have read.  Aftercare has
not been good, and we have chased up appointments.

Local charity are a great help to us both.  They have explained a lot and
are supporting us.


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)

 No.  Between double vision and loss of hearing on my RH side, I have
little confidence.  Walking without help to guide me is difficult.  I
have to cover my RH eye to read and block out the RH lens to see around
me.  I am hoping that something can be done for my vision and am told
the hearing will improve on its own.

Nicki's email: nicola@merlinsouthwell.plus.com

*Note from Neil:  Here is a link to an English-language Chinese Neurosurgical Journal article detailing other cases of this rare kind of Schwannoma: 

https://cnjournal.biomedcentral.com/articles/10.1186/s41016-015-0004-5

Case Study # 29, Brett Mcfarlane and his Ocular Motor Nerve Schwannoma

Hello everyone!  Today we are pleased to present our 29th Case Study.  This Case Study details the experiences of our friend Brett Mcfarlane who is living with an Ocular Motor Nerve Schwannoma.  We are very grateful to Brett for sharing what he knows about this rare kind of Schwannoma - and we join Brett in sending out the best wishes that this narrative may prove useful to those who truly need it.  - Neil 

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1)  How old were you at time of diagnosis?

 I was diagnosed when I was 43 years old. ( 2012 ) 

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

As far as I am aware, there has never been any history in my family of Schwannomas, but I do have relatives overseas & can't be to sure on that side of the family. But I don't ever recall anyone mentioning anything about it. 

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

My Schwannoma is located on my Third Cranial Nerve. ( Ocular Motor Nerve Sheath Schwannoma ) This is an Extremely Rare area to get a schwannoma without having Neurofibromotosis 1 or 2 associated with it. Prior to being diagnosed, I was having difficulties with my Vision, Balance, Coordination, & Severe Headaches. My writing has been progressively getting worse as well. 

Vision - I was getting double vision when looking up above shoulder height and my left pupil wouldn't constrict. ( adjusting to amount of light let in) There are no problems with the function of my right eye or limitations with the vision. But it does get tired due to doing most of the work. Some days my vision is a lot worse than others. 

Balance - I was starting to notice a change in my balance in everyday walking. I was finding it difficult to walk in a straight line. Even on flat surfaces. Upon waking I found it very difficult not to lose balance without holding onto something before moving. If I did, there was a lot of times I would fall into something nearby or fall over. If I stand up and close my eyes, my balance is very unstable So I went to see an Opthamologist, who was the original specialist to diagnose me a Tumor

Coordination- I was misjudging distance when reaching out to pick things up. Stairs were probably one of the biggest challenges I faced, due to misjudging the edges and sometimes missing it altogether. 

Writing- due to the pressure increasing on the nerve as the Schwannoma was growing, it was pushing my eye down and out. My writing has become a lot more uneven and very hard to read - even for me.

4) Could you describe in whatever detail possible, what kind of surgical treatment was performed on you Schwannoma & 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?) 

Surgery on the Schwannoma has not been done, due to the critical area it is in. ( mine is very much in the middle of the brain) But I have had surgery to my left eye( inferior rectus recession).

This was probably one of the worst experiences of pain I have ever had. ( No disrespect intended for the Surgeon. He did a great job ) But the headaches caused by having normal dissolvable stitches in the eye itself and scratching the inside of the eye lid for 2 weeks, gave me migraine headaches like I have never experienced before, and my neck ached constantly with very little relief from any medication administered or taken orally. The operation itself wasn't successful in realigning the vision due to the Schwannoma still growing at that stage. I certainly would recommend someone to have a good talk to their specialist/ surgeon about it and find out all available options prior to having it done. Especially if the Schwannoma was still growing. 

I hava asked about Gamma knife & Cyber Knife surgery, but because of the Schwannoma being deep in the brain- there is good possibility of it damaging the other areas surrounding it, or the the Schwannoma changing and taking on a Malignant transformation. 

5) Having gone through the experience, what do you think are the most  "Critical Questions" for someone to ask their doctor about surgery & treatment for this kind of Schwannoma.

Q1/ Have you had any experience in dealing with Schwannomas? and if so have you dealt with any in the brain region?

Q2/ Do you understand what symptoms a CN3 ( Third Cranial Nerve Sheath Schwannoma) 

can cause? If so can you explain them to me in detail or can I get some Neurologists or Neurosurgeons case study information printed out ( if you try to access some of this information yourself. Some of it is only accessible if you are a doctor/ specialist or pay for a subscription to access it.). 

Q3/ What options are there to treat the pain from severe headaches. ( headaches are extremely painful and can reach a 9 out of 10 on the scale)

Q4/ Other than constant pain relief, what other forms of managing the pain are available?

Q5/ What are the long term effects of the medications I will be given, and will they react with any current medications I am on? ( if your on any)

Q6/ What are the best tests available and most accurate to correctly diagnose what I have, if I don't have surgery to do a biopsy to give a positive Identification of what type of Tumor it is?( due to the location of it)

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

Currently I have just had my 6th MRI done. My Schwannoma has been stable for the last couple of years. ( size 12mm x 4mm x 3.5 mm) There hasn't really been much done apart from managing the pain and monitoring it, due to its location. There isn't any plan for surgery due to the risks involved, and the outcome may be worse after surgery. I have not really found that pain relief works well. I have been on many different high dose pain relief medications, but I was also diagnosed with a Duplicated Vertebral Artery which may be causing a nerve impingement near C7. So there is a possibility that this may be causing headaches ( as per discussion with neurologist recently) and possibly not the Schwannoma. So I will be going for another MRI in 2 weeks as well as Bilateral Octipal Groove Injections. If I don't have any improvement from these injections, I will then be off to see a Pain Specialist. So I will update this Case Study as new information comes to light. 

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

I am able to still do a lot of things I did before, but I have to be very aware of my surroundings, due to misjudging distance and because of the double vision. If my headaches are severe, my double vision becomes worse (I assume from the extra intracranial pressure). Driving at Night is not something I do very much of, due to the headaches caused by the bright lights from on coming traffic. 

The sun is definitely a big issue. Without sunglasses( very dark ones) I find it nearly impossible to be outside. I have had to move onto another career, as being a construction worker. The risks of injuring myself or worse (others around me) were becoming very real. My ability to do the same things with my family on weekends has decreased, but they are very understanding. 

Case Study # 28, Sophia Pafitis and her Story of a Sympathetic Nerve Schwannoma (Originally suspected to be a Vagal Schwannoma)

Hello all - and welcome to the 28th of our case study series!  This one features our dear friend Sophia Pafitis, from Australia.  In this Q and A Sophia shares her story of going through the diagnosis experience while her doctors believed she had a Vagal Schwannoma, and how she ended up in the surgical hands of Dr. James Netterville.  Sophia's story took her from Australia to Tennessee, in the states - and to the eventual discovery that she in fact did not have a Vagal Schwannoma; she had a Sympathetic Nerve Schwannoma.  We thank Sophia so much for sharing this experience with us.  And we join with her in the hope that this narrative is helpful to those who may need it. - Neil 

*Note, we stress the Dr Netterville used the technique of Intracapsular Enucleation on Sophia's Sympathetic Nerve Schwannoma.  This is a surgical technique he commonly uses on Vagal Schwannomas. 
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1) How old were you at the time of your diagnosis?

 Saturday 29th March 2014 - 3 months after my 21st birthday

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

No - None that anyone is aware of.

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

My Schwannoma was in the base of my skull deep behind/under my left ear. It was so large that my neck was visibly being pushed out and my jawline less defined.

The story of my diagnosis was an ordeal in itself.

The symptoms that lead to an emergency MRI that discovered my tumor were headaches, poor special awareness, dizziness, nausea, and the feeling of muscle weakness/fluid at the back of my neck/base of skull.

At times, I became so weak within an instant that I felt too weak to hold my own head up. This gave me a kind of nausea I’d never experienced before.

I went to the Emergency room in a public hospital, I waited 3 hours, was asked to walk in a straight line by the doctor seeing to me, and was sent home with the diagnosis of a ‘migraine’ – no explorative scans were taken. I knew this wasn’t right.

The next day, my spatial awareness, which had been getting slowly worse over a period of time, was so bad that I was walking into walls that I could see were there in front of me.

I took myself to a private emergency room and was given explorative MRI’s immediately. I was so nauseous at this stage; I had been given anti-nausea medication that made me really drowsy and delirious, like I was on drugs. This sense of confusion made the process all the worse.

My doctor read my scans before the radiologist had – he came and told me he couldn’t see anything, and that I should be fine to go once the radiologist checks off on it. I pulled my IV out of my arm, put my shoes on and packed up my things. Within no more than 5 minutes, the same doctor walked back into the room and said “I am so sorry, the radiologist has looked over the scans and you have a large tumor in your head. I was looking for fluid in the brain and completely missed it. You need to call your parents and tell them to fly to Melbourne immediately.”

I actually thought the whole thing was a joke, my girlfriend and I looked at each other and laughed, I said to the Doctor “Is this a Joke? 5 minutes ago I had a migraine?” This was met with a sobering, “No, this is not a joke, it’s really serious”.

I remember it so clearly, that very second was such a pivotal point in my life. Once my friend and I had processed what we heard, we stared blankly at each other and burst into tears. I called my parents who were in Tasmania, they were beside themselves and desperate to get as much information as possible. I had nothing more to tell them than ‘huge tumor in my head’ before being rushed into an emergency CAT scan. I remember sitting outside the hospital between scans with my girlfriend and I said “my whole life is about to change,” and oddly, I felt really calm.

The craziest part about my diagnosis was that the symptoms I was presenting with were COMPLETELY unrelated to my tumor. A neurologist that saw me after my CAT scan told me this, and I almost didn’t believe him. I would later be diagnosed with an autoimmune/neuromuscular disease called Myasthenia Gravis one year later, which is responsible for the symptoms I was experiencing.

Because of this disease and the tumor, both of which are really rare – it was sometimes hard to identify which was responsible for what I was experiencing.

The most noticeable symptoms I had from my tumor were the occasional but debilitating nerve pain at the base of my skull, which radiated up and around my head. There was no way to relieve this. I can only explain it as hands of fire trying to rip my neck open.

I had also been showing early signs of Horners Syndrome for years but hadn’t picked up on it – my left pupil is almost always constricted while my right dilated. I also can’t sweat or flush on the left side of my face – only in the tip of my eyebrow and side of my nose. If I’m in a hot climate or doing a work out, the entire left side of my face won’t flush or sweat, it’s like a vivid line down my face.

4) Could you describe, in whatever detail possible, what kind of surgical treatment was performed?

My family and I saw a total of 6 surgeons around Australia. It became more and more apparent how rare Vagal Schwanommas are, and how inexperienced the surgeons in Australia were as a consequence. I was the youngest they had seen or heard about with a tumor like mine. The biggest concern amongst all of the surgeons was my ability to speak and swallow post surgery. The voice box/chewing/swallowing seemed to be the main focus. There wasn’t one surgeon I spoke to that made my family and I feel as though I was in experienced, confident hands – because I wasn’t.

The only surgeon we found in Australia that had removed a tumor like mine was in Sydney, and I left that appointment feeling more depressed and helpless than I ever had. I saw he had photos of a daughter who looked to be of a similar age to me in his office – I think it’s easy for surgeons to emotionally disconnect with patients – as of course you would as a coping mechanism, so I asked – if it were her in my position, what would he advise? His face was enough of an answer, he truly didn’t know, and that was never going to be enough for me.

My Mum is the hero in this story. We were told from the outset – they have to sever the nerve to remove the tumor. This method of removal doesn’t allow for ANY hope of nerve preservation, as it’s essentially cutting the nerve clean at either side of the tumor.

In my Mums research, she started reading into a method of removal called Intracapsular Enucleation, which involved cutting the nerve vertically in an effort to ‘scoop’ out the entire tumor whilst preserving as much nerve function as possible.

I asked about this method of removal to 2 surgeons in Australia and it wasn’t even acknowledged or explored as a plausible option.

This lead me to find the schwanomma Facebook support group – which would ultimately result in me getting in touch with Dr. James Netterville in Nashville, Tennessee. It became really apparent that Dr. Netterville and his team were pioneering this method of removal and having amazing results doing so. He’d also done 200+ of tumours in the same/similar area as mine, as soon as I spoke to Dr. Netterville myself, there was never going to be anyone else. Not only is he the most talented, experienced surgeon I had come across, but he is truly one of the kindest, caring men I have ever met. He felt like family.

6 months later – my tumor was removed by and Dr Netterville on the 27th of July 2016. It wasn’t until they started the 6.5 hour surgery did they discover it was in fact a Sympathetic Schwanomma – not a Vagal as all surgeons and radiologists had initially diagnosed, and it was also larger than the scans had shown it to be.

I would say that my surgery was an epic success.

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?

- Have you ever removed a Schwanomma? (if the answer is no, I would stop there) - How many?
- What method of removal do you use/ how will you try and preserve my nerve function?*

- What was the success / ability of your patients post op?

Also, ask yourself if you feel like they genuinely care. Being a surgeon is seriously tough gig, and mostly they have little to no bed side manner in protection of getting emotionally attached to patients and how draining that can be, but you should feel and KNOW that they actually do care. You’re entitled to that.

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 the most help to you?

Recovery was tough, mostly because it was a surprise - the diagnosis had always been a vagal schwanomma, so my expectation of risk and side effects were largely associated with loss of speech and ability to swallow. I had accepted this and was mentally prepared for it. I even signed a contract acknowledging it before I went into surgery.

Turns out, it was a sympathetic schwanomma, which subsequently comes with different risks and side effects, mostly associated with the damage of the sympathetic trunk.

My surgeon was pleased to find it was in the sympathetic nerve, not the vagal, as sympathetic generally have less ability-altering side effects.

I woke up and my entire head felt completely off. I couldn’t feel the left side of my face and was struggling to see out of my left eye and I couldn’t figure out why. The two rigid drainage tubes coming out of my head still make me shudder at the thought.

I saw myself in a mirror and was totally deflated. I was still coming off 6+ hours on anaesthetic and felt like I’d been hit by a truck, but I realized my vision was impaired because my eyelid had completely dropped, as much as I strained to pick it up I couldn’t. I didn’t recognise myself at all.

The swelling makes you stiff, saw and really tender, I found myself naturally sheltering myself from hugs, anyone walking near the left side of my body – any physical contact.

10 months on, my swelling is largely gone and my side effects are the same as when I left the US post surgery – except I recently had my droopy eye fixed with an easy, minor surgery.

I have 3 main issues as a result of surgery:

1: Facial paralysis on the left side of my face, neck and ear. This isn’t noticeable to anyone, I can move my face, I just can’t feel it.

2: Horners Syndrome in my left eye, along with all the side effects it comes with. This process had already started prior to the surgery, but it’s now quite pronounced. My left eyelid noticeably droops and worsens when I’m tired; my pupils are almost always different sizes, if I work out, the color of my face is completely split into two, no redness in the left. I sweat in my eyebrow and tip of my nose, nowhere else.

3: First bite syndrome – This is pretty horrible. Every time I put something in my mouth, whether it’s my toothbrush, a drink of water or food, I get what feels like electric shocks powering down from the top to the bottom of my jaw, my nerve seizes up and precedes cramp - this process happens in under a second. The pain can be so bad that it takes your breath away, and makes the food drop out of your mouth. It doesn’t last a whole meal, the first 2-4 bites are the worst (hence first bite), but I usually need to stop and take a moment before I continue to chew on the non-affected side. My relationship with food has changed since surgery as a result of this. My palette is also extremely sensitive to sweet and sour tastes.

I would say that my surgery was an epic success.

7) Are you able to do all or most the things you did before?Yes! The general recovery + my disease are actually my most limiting things day to day. I don’t eat sweet things in a bid to avoid the pain of first bite – but other than that, I’m HUGELY fortunate.

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