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1) How old were you at the time of your diagnosis?
59
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 was admitted to hospital from A & E with an excruating headache.
Rushed through for CT Scan which resulted in having another one with dye
injected. They knew I had a tumor. Transferred to bigger
hospital with a neuro department.
MRI confirmed that Schwannoma was growing out of/round C6 in my brain stem. (* Commonly referred to as a 6th cranial nerve Schwannoma )
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 a very lengthy operation to remove as much as possible around C6.
Not sure at the time if all of it was removed, but all that could be
seen.
A follow up MRI and appointment shows that something is still on C6. If
it is more tumour it will grow, could be a lesion and it will remain as
is. Operation appears to have been a success at the moment.
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?
Obviously you need to be certain that you feel they know what they are
doing. Side effects: I did not think I would get hearing loss as well as
diplopia. I do and am trying to get appointments for help, but need to
get used to how things are. Medical team very excited about it being so
rare. I am glad some-one is pleased.
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)
It is quite early on in my recovery. I have learned about the process
through a local charity with support, and what I have read. Aftercare has
not been good, and we have chased up appointments.
Local charity are a great help to us both. They have explained a lot and
are supporting us.
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)
No. Between double vision and loss of hearing on my RH side, I have
little confidence. Walking without help to guide me is difficult. I
have to cover my RH eye to read and block out the RH lens to see around
me. I am hoping that something can be done for my vision and am told
the hearing will improve on its own.
Nicki's email: nicola
*Note from Neil: Here is a link to an English-language Chinese Neurosurgical Journal article detailing other cases of this rare kind of Schwannoma:
https://cnjournal.biomedcentral.com/articles/10.1186/s41016-015-0004-5
