Hello all! We are pleased to present our 21st case study - this one detailing the experience of a person who had two schwannomas removed from the back of their knee. We sincerely thank the person for sharing their experience, and taking time to write their story! - Neil
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1) How old were you at the time of your diagnosis?
28 Years Old
2) Do you have any history of Schwannomas in your family?
No
3) Where was your Schwannoma located? And what were the symptoms that lead to your diagnosis?
I have two Schwannoma’s in the back of my knee, and have recently had the largest removed. The symptoms that lead to my diagnosis were extreme burning and shooting pains from my ankle to thigh, especially at night, and eventually after exercise as well. This went on for a year and a half, and it was very difficult for me to get my diagnosis. I persevered with going to the doctor repeatedly for the same issues, but was diagnosed incorrectly various times. I was finally diagnosed with having Schwannoma’s after having two MRI scans.
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 had my largest Schwannoma removed by soft tissue excision. I consider it very successful. The Schwannoma was confirmed benign and I can walk properly after a few weeks without a crutch.
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?
I think that it’s important to ask about the risks. I had a meeting with my surgeon prior to surgery in which I asked extensive questions about all of the risks so that I could make an informed decision about whether or not it was worth having surgery. I was mostly concerned with walking properly again and the risk of not being able to feel my leg. However, though there was a risk of numbness, everything has been fine.
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)
Yes, I have made a positive recovery. I have had a lot of great support from my family and partner, and I found that this made a big difference at first because I needed a lot of help getting around. I also learnt quickly that if I didn’t eat a lot before taking my painkillers after surgery I would feel much worse. I was given exercises to do post-surgery and this was vital to my recovery. It was hard, but I did them twice a day and worked hard at practicing walking properly. I had a month off work and slept whenever I felt that I needed to, but I never gave myself a break from exercising daily.
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)
Yes, I have one tumor left but so far it is not affecting me. I can do more than I could before, as the schwanomma stopped me from exercising, sleeping and being able to get on with my life pain free. Now I feel like I did a couple of years ago, I can sleep without painkillers and can move better than before.
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