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1) How old were you at the time of your diagnosis?
32
2) Do you have any history of Schwannomas in your family?
No known history of Schwannomas in my family.
3) Where was your Schwannoma located? And what were the symptoms that lead to your diagnosis?
I had no specific symptoms. In fact, the way I was diagnosed was completely random. I visited a Gastroenterologist for some unrelated stomach issues, and while he was conducting a physical exam on my thyroid, he stumbled across a hard lump in my neck. The actual diagnosis of the Schwannoma took 2 months. My Gastroenterologist referred my to an ENT Surgeon. He sent me for a number of initial tests, including blood tests, an ultrasound, ultrasound guided FNA biopsy, followed by a CT scan, chest X-ray and abdominal x-ray and finally an MRI. The additional tests were largely to rule out lymphoma. Unfortunately, my first FNA was inconclusive, however the MRI indicated a likely Schwannoma, sitting on either my Vagal Nerve or Sympathetic Nerve and was also displacing my jugular vein and cartoid artery. It was ~2.5cm by 2cm in size. The ENT Surgeon's recommendation was to wait for six months and monitor via MRI.
However, I opted for a second opinion. Given the positioning of the tumour, I consulted with a Vascular Surgeon. He sent me for another biopsy; this time a CT-guided biopsy by an expert radiologist. The biopsy confirmed that this was a nerve tumour, but could not decipher whether or not it was malignant. By this time (~2 months from initial ultrasound), the tumour had already grown and the surgeon recommended surgery. His reasoning was that: (a) the tumour had already grown and it was unclear whether/not it was malignant (although he believed it was likely benign), (b) these tumours have a tendency to erode nearby structures and given the proximity to my cartoid artery and jugular, it was risky to leave it and (c) if the tumour were to grow by another 20%, the surgery would become increasingly complex and risky. I opted for surgical removal.
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)
My surgery was completely successful. It took 2.5 hours to remove the tumour in its entirety (even though they had anticipated a 4-6 hour surgery). During surgery it was discovered that it was a Vagal Schwannoma. My surgeon managed to save the nerve, and had to make minor repairs to my cartoid artery and jugular vein after removing the tumour.
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?
1. Asking the surgeon how many times they have seen similar cases and operated on a schwannoma. The ENT I went to said he had last seen one of these 20 years ago, and he had to consult with multiple experts to get a diagnosis and to decide on a plan of action. Those were both red flags for me.
2. Asking about the potential risks of surgery vs the risks of a more conservation approach of "watch and wait". Understanding the potential risks and side-effects are important to make an informed decision.
3. Asking about the recovery process e.g. how mobile will you be? How long after surgery will you be able to eat? How long will you be in hospital? I found these helpful to plan for the surgery and post-op process.
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)
My Schwannoma was removed 3 weeks ago. I spent three days in high care after the surgery. Amazingly, I could already eat solids the day after surgery. The next week was the toughest part, mostly because of the side-effects of the anesthetic, morphine etc. and the sheer exhaustion of physical activity (even just sitting on the couch chatting to friends). In the last two weeks, I've felt a bit better each day. I'm slowly starting to exercise again and get back to normal life. However, there have been two lasting side-effects from the procedure: a hoarse/weak voice and coughing. My surgeon referred me to a specialist ENT at a Voice clinic. After some tests, he discovered that one of my vocal cords is paralyzed, and it seems that the disruption of my vagal nerve has caused the coughing. I'm starting medication soon, as well as rehab with voice therapists (including electrical stimulation) so I'm hoping I'll be back to full strength in the coming months.
The things that have been of most help are:
- Staying with my family for 2 weeks post surgery. Although I wanted to go back to my own space, it was extremely useful to have people to help shop, cook, drive me to follow-up appointments and generally assist me.
- Seeing a physiotherapist. I was fortunate that my surgeon has a fantastic physio who works with him, and who helped me in-hospital with my back and neck muscular pain. She has also assisted in some rehab post-op which has really increased my mobility and re-integration into my normal life.
- Rest, rest, rest. Although the temptation is to rush back into normal life, I took two weeks off work and spent alot of time sleeping and resting. When I returned to work, I worked for half-days to ease back into it. Don't underestimate what a toll surgery takes on your body!
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If you have a Vagal Schwannoma and wish to write her, Nadia's email address is: nadia.oshry
