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Sumeeth’s Schwannoma story

04 April 2022

This is Sumeeth and this is my story of dealing with a Schwannoma.

I am 33 years old. I graduated in 2011 in Biotechnology from India and moved to Ireland in 2018 to work as a scientist. Believe me, I am a very good scientist LOL. I am a very positive person in general and never thought I would face any issues, which related to my health.  

It was in 2018 December, after a party and heavy drinking that I woke up hungover, which was terrible. I started walking and I felt some sort of muscle twitch, when I turned to left, and my left leg felt weak. I though it could be due to the previous night's party, so I ignored it. The muscle twitching went away for couple of months. I used to feel it once in a while during hangovers, so I always thought it must be due to alcohol. Then I reduced drinking but the muscle twitching never went away. I kept ignoring it, until March 2021.  

In general, I am a very active person, I used to do rigorous work outs, 6 kms running 3 times a week and rigorous yoga with headstand for 10-15 minutes. One fine day, I started to feel a tight stomach, without acidity, or any other stomach issue. I went to Emergency, they did some tests and said I am perfectly normal and gave me some antacids and pain killers. The stomach tightness never went away. I visited Emergency twice and both times they said the same.

One day, the weakness in the leg became quite discomforting, however there was no pain, or any other neurological deficits. I went to my GP and he immediately ordered an MRI. After a couple of MRI scans, they confirmed that I have tumours growing in my spinal cord. It was scary, as the reporting from the radiologist was not clear and they had concluded that tumours were metastasised.  My wife and I were in a terrible condition.

My GP immediately referred me to the best neuro hospital in Ireland. They did full body CT scans and a repeat MRI. This time, there was a definite diagnosis reported.  The report said that the tumours are neurogenic tumours, without any other issues. One tumour was in the cervical spine, which had a typical dumbbell shape due to  its growth from intradural to neural foramina which measured about 5cm and another one was in my lumbar spine which was 1cm.  Neurosurgeons immediately operated on the bigger one and removed it completely.  I stood up on my feet, the next day after my terrible surgery and was discharged from hospital on the second day.

Now, I am recovering at home. I am back on wheels, able to do mild yoga and lots of walking. The only thing which kept me positive was my wife’s support and my kids' smiles. I knew I have to fight this and I told myself that this growth can’t decide my fate. Whatever it is, I will beat it and I did that successfully. I have to thank the hospital staff, especially my GP and neurosurgeon for doing the best that they can do.  I have another tumour which is not causing me any trouble as of now but neurosurgeons are monitoring it. I can tell you one thing - that it doesn’t control me anymore, I control it. I have faith in myself and Almighty, that this thing is gonna get weaker and weaker and I will be stronger than ever. 

The biopsy of my tumour came back 2 weeks later, the tumour was confirmed as a Schwannoma, so the only thing I have to do now is get confirmation whether I have Schwannomatosis or not. A genetic test will help me with that. 

My advice to those diagnosed with any sort of neurogenic tumours, remember that your mind can control anything in the world. Do not let it take control of your mind. Be positive always. Live your normal life. Just beat this thing. 

I have told myself: no more hospitalisation until I am 75 😊. I know it’s idiosyncratic but that’s my attitude…