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1) How old were you at the time of your diagnosis?
I was 29 years old,
but i first noticed a small lump in my jaw area when I was 25 years old. I had
it checked and was advised at the time it was just a swollen gland or excess
tissue.
2) Do you have any history of Schwannomas in your family?
No family history. I
did work in a Dental Practice from the age of 17-25 working alongside X-ray
machines/radiation and there has been a link/research into schwannomas from
radiation exposure.
(*Note from Neil; web MD lists radiation exposure as a possible link to a certain number of Schwannomas - and there are genetic conditions like the more serious condition of Schwannomatosis that predispose a person towards Schwannomas. Other information sites list the causes of Schwannomas as unknown. However a sizable number of the members of our group did anecdotally relate some experiences of radiation exposure - though this was an unscientific poll of our group only)
I had found a small pea sized lump in my lower left jaw
area 4 yrs ago causing me no symptoms or pain and at the time I was advised it
was nothing to worry about. In November of last year I woke one morning to
swelling around the area, tightness of the area and noticed the small pea sized
lump had grown to the size of a grape. I had also started to experience
vertigo/dizziness and I had severe migraines building up. I was on a pain
killer called Tramadol for the migraines and another for the vertigo but I now
forget what this one was called. I went to my Dentist with it being in the jaw
and he referred me on to a specialist at the hospital where I had an X-ray
taken (not much was seen on the x ray), I then went in for a Biopsy but with
the tumour being like a hard capsule they struggled to get a decent sample and
as expected the results came back inconclusive. I then had an MRI scan and it
was after this that I found out it was either a schwannoma or a neurofibroma
(during surgery it was confirmed as a schwannoma).
I then met with the
surgeon/specialist who was going to do the removal of the tumour for me. He
advised of his experience over the years but did mention he hadn't seen
anything quite like this before and did consult with his colleagues on it. But
I felt I was in great hands and was extremely comfortable for him to carry out
the surgery.
From being referred to
the hospital to being diagnosed and then to having the surgery carried out I
was 7 months in total.
I was advised of the possibility of nerve damage to my
facial nerve. If the schwannoma was inside or entangled in this nerve it would
need to be removed and they would take another nerve from my neck that gives
feeling to the ear and graft that in its place. This process could take several
months to a year to work and could result in my lip at the left hand side
"drooping down", and leaving me with no feeling down this side. Even
if he didn't have to remove the nerve, I could still have ended up with damage
or paralysis to this as nerves are extremely sensitive and stretching and
moving of them can cause the same problems. I was to be cut from the top of my
ear down to my midline neck in order to give enough access. The prospect of
both upset me as I worried my new appearance would upset my 5 year old son but
I knew I had to have this removed as the dizzy spells and migraines were
unbearable and also, removal was the only way they would be able to 100%
confirm it was a benign tumour (in most cases these tend to be!).
I went in for surgery
8am on a Tuesday morning , and was in theatre by 9am, out for 12.15pm in the
recovery room. I woke to some pain and was given an injection to ease this
aswell as another for the sickness I was feeling (this was either a reaction to
the general anaesthetic or the morphine I had been given). The rest of that day
is a bit of a blur. But I do remember when I got back to the ward I requested a
mirror to have a look at the "damage". I was actually so pleased with
the end result. Although the scar down the side of my face was a bit upsetting
the surgeon had managed to "lift" the facial nerve and remove the
tumour without causing much damage. The stitches were placed inside/under the
skin and so they were not visible. I also noticed I had bruising along my
forehead and the beginning of a black eye. I'm still unsure if this was down to
some sort of clamp they had to use to hold my head in place during surgery or
if it was just pressure as they were working below this area.
Eating was difficult
for the first while as my jaw was swollen and tender and felt very fragile.
Two weeks on and I look
almost back to my usual self again apart from some slight swelling still to go
down and the scar down the left hand side of my face. It's healing well and
fast though and in no time it should just be a thin line hardly
noticeable.
I still suffer with migraines
although not as bad and I am still feeling quite dizzy. I have been advised
this is due to them working in and around the inner ear causing me to be off
balance. My employment consists of me driving quite a bit and spending periods
of time on my own in empty houses/flats so I am still off although if I had a
more office based role surrounded by others and with no driving I feel I could
be thinking about a return to work soon.
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?
Best advice I could give for this one would be to make a
list before you go for your appointment and go through that list one by one
with your doctor/surgeon.
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 am recovering very
well 2 weeks after surgery. Although not confident to drive distances etc yet
due to the dizzy spells and also the stretching of my stitches down my neck I
am up, out and about going for plenty walks/fresh air which I find has helped
my mood as being stuck in the house on your own can leave you feeling sorry for
yourself.
My scar is
fading fast and swelling is very minimal now.
I had been keeping on
top of medication given to me as pain relief from hospital but I am now
completely off them and all I take is something every now and again for my
migraines and anti sickness tablets for the dizziness.
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)
Other than driving
just now I am able to do everything the same as before. I have no regrets about
having my surgery.
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