Moms With Schwannomatosis Tell Their Stories

Hello!  And welcome to a short blog-article on the subject of moms with Schwannomatosis!

Recently when we asked for feedback and experiences from moms who had battled Schwannomas - we noticed we also received comments from moms who had the condition of Schwannomatosis (This is a condition that pre-disposes a person to Multiple Schwannomas, sometimes clustered in a single limb, or sometimes throughout multiple nerve pathways in the body).

We send our sincerest thanks to the mom's who shared a bit of their stories in hopes of helping others.  Wishing you all a strong and pain free day!

Neil
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Here are the comments we received from mom's with Schwannomatosis:

First response: I actually found my first Schwannoma due to a pregnancy. It was discovered during an ultrasound. I ended up miscarrying and they sent me for an MRI. Long story short, after surgery, and biopsy I discovered it was a Schwannoma. This began a discovery of several more, another one removed in my foot.  I was diagnosed five years ago with Schwannomatosis . I have had two successful pregnancies since then. My first pregnancy I didn’t have any problems, but my second one I did. My son was a large baby and I think he put pressure on the one in my pelvic area. I couldn’t sit for long periods of times, and had trouble getting up. It would cause numbness in my legs. It was only the last two months of pregnancy, but it was hard. I still managed to work and work out, just had to move through the pain. I just had my son two months ago, and have my annual MRI to check the growth of the one in my pelvic area. My doctor said the type of Schwannomas I have though, pregnancy hasn’t been known to cause any major changes in the growth. Again, not a lot of research, but if made me feel better.  Like the other women said I do worry that I passed these along to my boys.  After my first son I really didn’t want another because of this fear.  I realized how much I wanted a family though and I couldn’t let the disease get the best of me.  In the future I would like to get testing done and have my boys tested, but for now just making them aware and being conscious of any pains they have. I mean I didn’t discover mine until I was 30.

Second Response:  I have Schwannomatosis & was scared that I would develop other tumors due to pregnancy hormones. I have, so far, only had two Schwannomas. One in my left calf muscle removed Feb. 2012 & one on the bottom/ middle of my right foot which was removed in Dec. 2016. 

So far I have not shown any signs of other tumors, and hope that remains the case.
I am fearful that I will pass Schwannomatosis to my child and future children, but I do not want a disease to fill my life.
When I got pregnant I had been off of any pain medicine for 9 months. I’m not sure I would have tried for biological children if I couldn’t have my tumors removed. My pain was very severe and I couldn’t imagine dealing with the pain without medication.

Also. I didn’t state this. I had my daughter July 2018. No tumors at that time just previous, ones that had been removed.

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Moms Who Have Had Schwannomas Share Their Stories

Good morning everyone!  Today I am pleased to bring you our newest blog-article compilation.  This one is an article featuring experiences and stories from moms who have had Schwannomas.  In most cases, when we have created blogs on particular topics, the topics in question have come from questions that we get asked all the time.  Most recently, a good number of women have chimed in wanting to hear from other women about their experiences having had Schwannomas and being moms.  Some of the women interested currently have known Schwannomas and are wanting to know how other moms have handled pregnancy in addition to the Schwannoma issues.  Recently, on the SS and SF Facebook page we asked for moms to tell us some of their stories, and below are some experiences and responses from mothers who were kind enough to share them.  Thank you so much to the moms who have shared their stories!  We hope this article brings some much needed help and perspective to new moms to be who are also battling Schwannomas! - Stay strong, Neil

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Response #1:

Hey, guys! I am so happy I found you! I was experiencing back pain for 3 years now. I thought it was sciatica. I got pregnant and the pain stopped. 6 weeks after the baby was
born, my pain was back. I did an MRI and found out that I have a Schwannoma (L1-L2) and I
need surgery. What to do? I was breastfeeding and I was afraid.  I talked to several doctors here,
in Romania, and decided to postpone the surgery until the baby is 6 months old.  Meanwhile, to
cope with the pain, I took ibuprofen (200mg) once a day. My baby is going to be 6 months old in a
week and I am thinking that I should get the surgery.  I am very afraid that's why I'm so happy I found you. I hope to find the strength I need here, with other Schwannoma survivors, even though.  I am from another country. Thank you!

Response #2

 I was diagnosed in 2011 when I was 18 with one in my pelvic area...had it removed about four months after as it was causing me a lot of pain down my right leg and foot...had my first child in 2014 and had no problems and again in 2018 had my second and no problems at all.

Response #3

 I am a Mom and was diagnosed with a large sciatic nerve root Schwannoma
in 2002. I began experiencing pain in 1998. Saw several doctors and surgeons, had several
MRIs of my lumbar spine. The MRIs showed some mild bulged disks, but ultimately diagnosed with sciatica and piriformis syndrome. In 2000 I became pregnant with my son. As he began to grow, the pain became more intense and I was unable to take anything stronger that regular
strength Tylenol. In my 3rd trimester my OB/GYN approved an epidural type procedure that
would direct pain relief directly to the piriformis muscle and would not affect the baby. It didn't do much so I had to bear the pain. I remember taking lots of baths to relive the pain and I could lie
down in certain positions that helped. A few months after my son was born, I was back in the
doctor’s office and by now they thought I was drug seeking! Very frustrating! Finally in early 2002
I was referred to a chronic pain specialist and he suggested an MRI of my pelvis, finally!! So get a
call less than a week later and of course they tell me its a mass in my pelvis and I am now
freaking out thinking I have cancer, ugh! In May 2002 I was referred to a neurosurgeon and had
the surgery. It was successful and the tumor was benign. What a relief! Since the surgery I have
experienced numbness in my buttock down to my knee and its never improved after all of these
years. The nerve damage doesn't really affect my daily life, but I didn't realize it would be life long.

Response #4

I was diagnosed with an acoustic neuroma and multiple sclerosis on
the same day 5 years ago. I went on to have brain surgery to remove the neuroma. I was left with
a bit of temporary facial paralysis and a loss of hearing in my left ear. We got pregnant about 3
years later and have a healthy 8 month old baby. Being pregnant was the best I’ve felt since high
school. I was always scared about how pregnancy would affect my health, but my body flourished
during those 9 months. The postpartum period proved to be a little more difficult but I’m finally
leveling out again about 8 months later. I too worried about passing a genetic risk onto my child
but he is a robust 24 pound 8 month old and is seemingly very healthy. The vertigo that I
experienced after surgery has reoccurred in the postpartum period. I am thankful that I decided to
have a mother despite my previous reservations.

Response #5

 I had an intradural extramedually thoracic Schwannoma removed in 2013 and have
since had two children in 2017 and 2018. Made aware I would be unable to have an epidural
(wasn’t in my optimal birth plan anyway) due to cord compression and would need to be put
under general anesthetic if necessary but I labored fine with both children. Prior to pregnancy I
experienced regular nerve pain but both pregnancies seemed to alleviate all of those problems.

Response #6

I have Schwannoma’s and had during my pregnancy. Once I felt the life growing
inside me that’s all I focused on.  I had a son, perfect in every way.  I had a C-section that caused me a little hospital time. I was able to have my son sleep on my chest everyday thanks to a friend you would bring him in and stay with me to help change diapers, etc.  Because of all the meds I was not able to breastfeed.  It was mind over matter.  I was so at peace with them coming to the hospital everyday I put the pain aside to enjoy every moment.  It’s amazing how a baby can change your life for the better!!

Response #7

After birth of my daughter Nov 2012, I began having much right leg pain, heaviness, and numbness. Being military at the time it was a priority that I get back into physical shape by 6 months. My time limit passed and the pain became unbearable by the fall 2013. In June 2014 during incidental finding I had a pelvic 4cm plum on the right femoral/sciatic nerve. After finding a neurosurgeon to even see me, I found out I was pregnant with my third child at same time. So I was monitored for growth of the Schwannoma and went through the pregnancy without any medication. Pregnancy went perfect, no complications, Natural childbirth.  Tumor was surgically removed June 19, 2015. Unfortunately for me, my Schwannoma returned in 2016, same location and is currently 6 cm.

Response #8

I have a spinal Schwanoma that was discovered two months after the birth of
my daughter. I went on to have Cyber knife Radiation. Two years later with no tumor growth I had
a little boy. This pregnancy was very uncomfortable and I ended up need physical therapy for my
neck pain. I still have numbness and loss of feeling in my left arm. But both of my children are
happy &  healthy.

Response #9

I did and I'm raising 2 sons, one severely autistic.

Response #10

I’ve not had any more children (mostly by choice); however, my grandma went on
to have my dad after having what we think was a Schwannoma removed from her pelvic area. 
Also so many women have pelvic cysts, polycystic ovaries, etc., removed and still go on to have
successful births.

Response #11

 I have a 16year old and a 4 year old. I was not diagnosed until 2017. I. was told based on size of my trigeminal Schwannoma it was likely that it developed 10-15 years.  So my oldest was between 1-6. Only symptom I had was migraines and until 2017 was considered hereditary. No other issues pregnancy related known

Response #12

I have multiple Schwannomas. I had 2 miscarriages and 2 deliveries at term. I
was not diagnosed with Schannomas until almost 4 years after having my 2nd child. However I
have imaging that shows Schwannomas on the Iliopsoas muscle dating back to when I had my
second child. My sister who has passed away also had 3 successful pregnancies.

Response #13

My pain appeared months after my first pregnancy, and a year later while
rehabbing my suspected “herniated disc” I became pregnant with my second child. My pain
progressed tenfold during that pregnancy. I had an MRI 6 week’s post-partum and got my L5
nerve root Schwannoma diagnosis. I found that my nerve pain quickly accelerated after childbirth.
Not sure if it was related to delivery, hormones, stress, etc. After a grueling year of trying to
manage a toddler and newborn while living with chronic pain, I had my Schwannoma removed at
Mayo 3 months ago. My decision to have surgery was due in large part to my desire to have
another baby, as I know my body couldn’t have handled it in that state. At this moment my nerve
pain is nearly undetectable. I find myself terrified of having another pregnancy as I feel it may
jeopardize my progress. I would love to see any research that discusses pregnancy/hormones
and Schwannomas.

Response #14

Had my Schwannoma from my neck removed when my kids were 10 and 8. Doctor said by the size of it, I had it for about 15 years. Had good pregnancies with 1 miscarriage in between the 2. Although; never went into labor, and had C-sections for both. Have paralysis in my left vocal cord from the removal and I hate sounding so gruff for the past 20 years.  Still miss my old voice.

A Remarkable Story of Hope, Colin MacKenzie Running the London Marathon After Cervical Schwannoma Surgery

Hey everyone!  Today I'm pleased to present to you a story that should give us all hope...the story of our friend Colin MacKenzie and his successful run in the London Marathon, after having had cervical Schwannoma surgery.  I feel like such stories are truly needed, because for some people, Schwannoma pain can make even the most basic things extremely difficult.  For some, just going out to get the mail is an ordeal.  Or taking care of a child.  Or just making it through a shift at work.  However some survivors are people who take the norm and stretch that possibility to the max - and Colin MacKenzie is one of them.  Based in the UK, Colin trained for and completed the London Marathon in 3:41:23, after having had surgery for a cervical Schwannoma.  Colin was kind enough to answer a few questions about this experience, and we thank him for taking the time to do so - and for demonstrating what is possible for athletes and anyone else who has had a Schwannoma.  - Neil

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1). What were your symptoms before your Schwannoma was discovered? How did it affect your running before it was found?

The slow growing nature of Schwannomas meant that my symptoms came on very slowly over a long time. I gave up rowing in 2006 shortly after my daughter was born (but before I noticed any symptoms) and fell out of the routine of exercise. I had a few attempts over the next few years to get fit again but did start to struggle a bit with my feet. The best way to describe it is the feeling you get just before your foot falls asleep, the not quite numb feeling and not quite pins and needles. In some ways it felt a bit like my feet were drunk - I couldn't really rely on them landing correcty and in fact did sprain my ankle when playing around in the park. Over time my legs felt really tired all the time despite not doing any exercise. It is worth saying that I had no pain at all. By the time I went to see my GP I couldn't even run for the bus!
2). When your Schwannoma was located, where was it found? What kind of procedure was performed and was it successful?

I was referred to a neurologist who sent me for a head and neck MRI. He told me he was looking for either compression (eg a tumour of some sort) or inflammation (eg MS or Motor Neuron Disease). It turns out it was a Schwannoma on my spinal cord at C1/C2 (right at the top of my neck). It was surgically removed on 13 June 2012. A follow-up MRI a few months later confirmed it was completely removed and a further MRI in 2017 showed no regrowth. The only side effect I've been left with is a numb patch on the back of my head which corresponds to the specific nerve that was damaged. 3). How long did it take you to train back up to the strength required to run a marathon? What was that process like and how did your body feel after having gone through the experience of having the Schwannoma?

Recovering from the Schwannoma was one thing, recovering from the surgery was another. In the days after the surgery I could feel the feeling returning to my feet quite quickly as my spinal cord decomressed. My neck was very sore and stiff from the surgery though. It took a good 6 months before I had most of my movement back and a year before I felt normal again. August 2013 was the start of my get fit campain. I started on the treadmill and cross trainer before building up slowly to 5km. I was lucky to discover parkrun which is an organisation that puts on weekly free 5km runs in parks all over the world now. This helped with motivation and gradually my times improved. I built up over the next few years and found out I had a place in the 2017 London Marathon in late 2016.
I think the key was taking it slowly and listening to my body. I didn't have any residual symptoms from the Schwannoma, my movement was back to what it was before and it just felt good to be able to run up a flight of stairs again. If I'd been told the day before surgery that the best outcome was that my symptoms wouldn't get any worse I would have leapt at it. But here I was 4 and a half years later starting to train for a marathon.


4). How did you feel during the race? Did you find that it the feelings in your body were greatly different than before the Schwannoma?  

The race was an amazing experience. The atmosphere of the London Marathon is incredible. Crowds line the whole course and there is a constant wall of noise of people shouting your name and encouraging you on to the finish. Comparing how I felt now to before surgery was like chalk and cheese. In the months before surgery I couldn't run at all and even walking was becoming difficult. But if I compare back to my rowing days then there was no difference (apart from the march of time from which none of us are immune!) My training had gone very well. I'd clocked up just over 500 miles in the 16 weeks before race day so I was ready for it. I held back a bit in the beginning and it was only at 15 miles where I caught up to my target pace. Rounding the final corner in front of Buckingham Palace was an emotional moment and crossing the line was real celebration of everything I'd been through to get to this point. 5) Lastly, having gone through this experience, what are some of the key points of advice that you'd like to offer to other runners or athletes trying to train back into shape following a battle with a Schwannoma?

Don't try do too much too soon. Runners I know are notoriously bad at taking time to recover from injury. Listen to your body, and get advice from a qualified medical professional if you have any issues. Join a running club or group. Doing it with people around you is so much easier than trying to go it alone. Enjoy it!

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You can email Colin at: colin.mackenzie@rocketmail.com

Case Study #34 the Story of Wendy Nesdahl and Her Rare Gastric Schwannoma

Hello everyone and welcome to the 34th case study in our series covering Schwannomas.  This case study is from our friend Wendy Nesdahl who kindly offered to answer a few questions about her extremely rare experience of having had a Gastric Schwannoma.  We thank Wendy for taking the time to tell a bit of her story, since the more rare the kind of Schwannoma a person has, the more rare the information may be.  And we want to make every effort to have our 'Case Study' series reflect the greatest number of different Schwannomas that are possible.  Thanks to Wendy for sharing her story! - Neil

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Case Study Questions

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

I was 42 years old at the time of diagnosis, but had been to my Primary Dr. and ER several times with no help.  One time they even ordered a CT and it showed in the results (my Dr. just showed me this last week 5/18) and the ER sent me home telling me there was nothing they could do for me.

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

We are not positive, my grandmother on my Dads side had a tumor removed from her stomach years ago however we can not ask her as she has passed.

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

It was located in my stomach.  This tumor was very painful, at times it would feel like someone was stabbing me with a knife and I was doubled over in pain.  I had a hard time eating foods when I did eat it went straight through me and I drank a lot of coke.  Weird I know but it was the only thing that would somewhat calm my stomach.

 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 finally referred to a gastrenologist who preformed an endoscope and biopsy, which flared the tumor.  Within a week I was in surgery with the same Dr. (Still not knowing it was a Schwannoma) and he removed it and 1/2 of my stomach.  The tumor was the size of a golf ball.  I was supposed to be released the following day however I was in so much pain (I suppose from all the nerve endings he had just cut) I stayed 3 days longer.  My tumor was sent off for testing and that is how I found out it was a Gastric Schwannoma.  Yes, I would go through it again, I lived pain free for the first two years.  I have had three scopes since it was removed to check to see how I was doing.  I am currently going through more testing as I have been having a lot of the same pains from the first one for about nine months.

 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?

Be persistent!  No one believed me for the longest time, lots of Dr’s said because I had Chronic Pain they would not treat me, which was really sad because I was truly sick and in tears when I would show up to the ER having an attack.  I was lucky to end up with a very caring Dr. even though he new nothing about Schwannoma’s he has done everything possible for me!  My tumor was found in a CT, however did not know what type of tumor until it was sent off for testing.  That is when I was told it was a Gastric Schwannoma Nerve tumor.

 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)

The hardest part of my recovery was now I had a tiny stomach that hurt just not as bad and wow do you use stomach muscles.  My Dr. did say after surgery that I had a lot of muscle he had to cut through, which kinda made me laugh cuz I was fluffy just not as fluffy as he thought.  As soon as I was allowed to I would take mini walks even if it was one house away.  Definitely follow Dr. Orders this probably helped me the most and made it a positive outcome for me. 

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 don’t know that I can fairly answer this question for the fact that I feel my tumor probably went undiagnosed longer than normal because I have an internal stimulator in my back to control pain in my back and down my legs, but it also radiates around to my stomach.  So even this time I have put off going to see my Dr. for nine months.

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If you are suffering from a similar kind of Schwanomma and would like to send a message to Wendy, you can email her at: wendy.nesdahl@gmail.com

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