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Phil’s Story

Schwannoma - Intradural Tumor L5 & T2

My story started approximately 3 years ago when I went to the doctor because I had pain in my right leg, initially
started around my hamstring but with time moved further down my leg. Following my examination I was told I
actually had sciatica and went for a number of physiotherapy sessions and was advised to exercise on a regular basis, apparently walking was ideal.

I embarked on my walking regime and things did get easier for a while, however approximately a year ago I noticed pain in my lower right leg/ foot, at times this was a real burning sensation that really hurt!! The majority of the time I found the pain to be relatively dull, it was however worse at night and became almost constant.

In May 2015 I decided to go back to my doctor, he again thought it was sciatica but referred me to a back specialist to be checked over completely as I have private medical insurance. I saw a specialist who referred me for an MRI scan. The scan results showed I had a spinal tumor in my lower spine and I was referred to a neurosurgeon. I was fortunate, I only had to wait a week for my appointment, however in this time I researched spinal tumors on the internet and read numerous very scary stories, none of which had the answers to the questions I had, but did manage to frighten me.

When I met the consultant for the first time he was very reassuring, telling me he could remove the tumor without any problems and he expected me to make a full recovery. He asked however that I have another MRI scan on the remainder of my back and brain as a precautionary measure. Apparently this was just to ensure I had no more tumors, it was felt this was highly unlikely and as such there was no need for a follow-up appointment before my surgery.

Two weeks later (June 2015) I was due to have the tumor in the lower part of my spine removed, but just before the operation I was informed two more tumors had been identified, one pushing against my spinal cord at the top of my spine and the other around the front of my neck, and as such I would require further surgery. It was agreed I would stay in hospital and get the tumor at the top of my spine removed the following week.

The first operation was painless, however I was required to lay flat for 48 hours, which made eating and drinking quite tricky - I found the second day to be quite uncomfortable as I had become constipated due to the painkillers and lack of movement. On day three the physiotherapist got me up, I was warned I may faint, fortunately this did not happen. I was able to take a few steps and sit up in bed. The physiotherapist signed me off saying I was allowed to walk alone, this gave me more freedom and meant I could shower etc. My walking was very slow and quite stiff but I could walk small distances.

The following week arrived and I was due my second operation. I was warned the recovery would be more painful due to the location of the surgery - entry was made between my shoulder blades. Again the operation was painless, and this time I was allowed to sit up to a maximum of 30 degrees - I found this much easier, however it was more painful to move due to the location of the surgery (as expected). On day three the physiotherapist came to get me up as before, I was really confident, as was she that this would not be a problem and that I would be up and walking. I found getting up really painful and once standing my blood pressure plummeted to the extent that I nearly fainted, so I was laid back down and told to wait another day - I found this demoralising and was quite frustrated as I wanted to get back to normal as soon as possible. The next day arrived and I managed to get up and walk without too much difficulty.

A few days later I was discharged from hospital, armed with painkillers and dressings for my wounds, with strict instructions I was not to lift anything heavy for 6 weeks. Over the first couple of days I found it a little difficult doing quite simple things such as getting in and out of bed; this soon passed and I started to cut down on the painkillers. Within a week I was able to walk around the block and even managed to take my wife out.

As I write this, it is 4 weeks to the day since my second operation. I am no longer taking painkillers, have just completed my second 2 mile walk of the day, been able to log on and do some work and have no pain in my legs. My back feels a little sore but nothing major.

In closing I would summarise that initially I was very daunted by the diagnosis of these tumors, however with the great care, support and love provided by my wife, children, family, friends, the consultant and the wonderful staff at the hospital, I have come through the other side and I am not daunted by my impending third operation.

Having read other peoples stories on this website I fully appreciate how lucky I am and my thoughts are with those people. I am not the type of person who would normally submit an article such as this but I wanted to give others who have just been diagnosed hope.