*Note: Dani would like to possibly connect with someone else who had this kind of Schwannoma. If you have had this, and would like to speak with her as well - please email neilmyersart@gmail.com ( This is the email for Neil the group coordinator ) and I will connect you with her...
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1) How old were you at the time of your diagnosis?
I was 25 when it was diagnosed as a schwannoma but was aware of the problem from the age of 23.
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?
My schwannoma was located in my left nasal cavity (paranasal sinus/sphenoid schwannoma is the ‘technical’ term). My symptoms developed as the tumour became more apparent.
Firstly I had a constant blocked nose that wouldn’t clear and made me sound nasally. I was used to a nasal drip that had been around for at least 4-5 years prior to diagnosis but I am an atopic person so thought it was related to that. My symptoms worsened when I was 23, with my nose being blocked more so than usual and it needing pressing in order to clear away the mucus. I also started to feel sick a lot and had periods were I was unable to eat. As time went on my nose started to run without provocation and eventually I was getting through a box of tissues in a day- it had even started to bleed. My sickness got worse along with this. I also started to get extreme headaches and was sensitive to light.
Before it was identified as a Schwannoma I had started to get dizzy and even more nauseous than before with periods of fainting and panic attacks. This increased after my diagnosis, although some consultants thought it was related; others said it was stress/worry related. Overall, the main symptoms were nasal drip, nasal blockage and bleeding, fainting and sickness.
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)
Initially a biopsy was preformed endoscopically in order for diagnosis. For the tumour itself I underwent an endoscopic resection of the left nasal which was carried out macroscopically. I had this on 17th August 2015. In terms of success: the tumor is gone and my nose feels clearer than it has in a long time. However, I am still experiencing some post-op symptoms such as a nasal drip and also my nose cannot clear itself properly so I have to wash the cavity with a mixture of salt, bicarbonate of soda and sugar - still to clear it and make sure it stays infection free. I also have headaches still that are normal triggered by pain in my nose which is similar to head rush (best way to explain it).
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 you need to ask how long it will take for you to undergo surgery/ treatment (realistic figure) as mine took a while from diagnosis to operation (1 year total), especially as I was having serious symptoms at this stage. Leading from that, ask what symptoms are expected and if you have different ones confirm that they are related so that they can be treated effectively.
I also had 5 consultants in total as I was passed around (NHS system) in order to get someone who knew more about Schwannoma extraction- therefore I think if you have a choice make sure you ask your doctor/surgeon what experience they’ve had with your type of schwannoma.
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)
I think that I am more positive in my recovery now than I was a month after the operation. This is mainly because I expected to be better faster than I was- I think it’s important to know how long a full recovery will take (not just how long it will take to get back to work). Also, to be patient with your body and not try to do things to fast after the procedure.
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)
Generally
yes. I can still do most things although I find talking for long periods harder
as my nose blocks up and needs to be cleared. I also find I get headaches
easier than before my diagnosis. Otherwise I am able to do everything I did
before.
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