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