Irfan’s Story

Hi, my name is Irfan Sohail. I run a small boutique consultancy and advisory business. I am also a HeartMath stress and wellbeing coach and currently studying to be a nutrition and fitness advisor. I currently live in the Midlands.

I was first diagnosed with a retroperitoneal schwannoma back in 2016. I originally thought this was lower back pain and for the most part had attributed this to the amount of travel I was doing for work at that time and generally my body telling me to slow down. However, following an MRI scan, they found a golf ball-sized tumour nestled next to the aorta, which was most likely the cause of the acute lower back pain and nerve-related pain that I was experiencing.

I had largely ignored this, or certainly ignored the gravity of the situation. I was heavily involved in a work transaction that had taken over my life at that point, and I continued on a relatively severe regimen of painkillers that made daily life very difficult to navigate. By this point, I struggled to walk without a cane. Things were chaotic, to say the least. There was very little information about this type of tumor; in fact, it only occurs in 1 in 56,000 people. I was told that the location was quite dangerous for a biopsy; however, after about three months, a consultant radiologist agreed to biopsy the tumor to check for malignancy. Thankfully, it was benign. 

At this time, I was also experiencing other issues. My anxiety was through the roof, fueled by side effects from the medication and the fear of the unknown. So, I decided to take a break from work for a short while to focus on my recovery and understand more about this type of tumor and how I could better manage it.

Pain management was at the top of my list! I had severe sciatica, my hearing was also affected, which was a known issue, I came to understand this a little later on. I was experiencing severe dizziness, vertigo, and issues with my blood pressure. I couldn't walk for more than half a mile without a stick. I couldn't run. I couldn't really do any type of physical exercise. I certainly couldn't travel for work or work at all at this stage.

I had introduced yoga, meditation, and QiGong to help with pain and try to find some middle ground without medication.

I felt very alone. Nobody knew anything about this type of tumour or the effects of it. I came across Nerve Tumours UK much later in 2023, and I can honestly say that being in a community of others that have been through this has been life-changing. Most recently, I attended the NF1 information day, and I can honestly say it felt like being home. The information, the people, the resources, and just not feeling isolated anymore have been a game-changer for me.

I am now working with some of the team at Nerve Tumours UK. They are helping me understand more about the trajectory of my issues, have signed me up for specific health professionals within the NHS who are specialists in this area, and I cannot say enough after all these years how much this help and support actually means. Me and my family have felt very much on our own. Not anymore.