6 months ago I was told I had a schwannoma which is a nerve sheaf tumour. This is in my thoracic spine in aortic arch. I had my MRI reviewed by the lung cancer team who have then arranged for me to meet with a thoracic consultant who basically told me needs to come out but not yet as currently to much covid in the hospital. I am told they are quite rare and information that I’m finding out would suggest I need to see a neurologist and spinal consultant although each time I ask my doctor about having a second opinion he is just dismissive I am made to feel like I’m wasting their time as I was before the diagnosis.Very worried as this requires part of my vertebrae to be removed to cut the tumour out and then reattached. Just concerned that I’m not being told anything or seeing the right people. I have also have the MRI reviewed privately and they feel it’s more likely to be a bronchogenic cyst as this is a classic site for them but the consultant assist me they are wrong. Don’t know who to speak to or what to do.
Hi
I don't have any experience with schwannomas but I noticed that your post hadn't had any replies yet. You might also like to post in the spinal cord tumour group which I can see you're a member of. If this is something that you'd like to do clicking on the link I've created will take you straight there.
The team of doctors looking after you will have used national treatment guidelines to decide on the best course of treatment for you. If you're concerned that you're "not being told anything or seeing the right people" then it may be an idea to ring your consultant's secretary and get her to arrange another meeting with the consultant so that you can discuss your concerns.
If you decide that you do want a second opinion then clicking on this link will take you to Macmillan's information about this and how to go about arranging it.
It would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
