My tongue:
If you need some advice on this type of problem, this is where I got
mine from.
Photo links to my tongue are at the bottom
of the page. I'm about to add a menu to this page to make navigation easier as well. The
page is starting to get too long!
For a full background on my condition keep
reading. News at the top will be dropped to the bottom as new information comes to hand.
I have received two emails from people who are or have gone through the same problem and
with their permission will be adding there case histories here as well. Hopefully we can
get a Vascular Malformation of the Tongue Forum going here.
Photo A April 29th 2004
Photo B April 29th 2004
Photo April 27th. 2004
May 17th:
Yesterday I went to see a renowned laser
dental surgeon Professor Amagasa at the Tokyo University of Dentistry hospital, who also
misdiagnosed a hemangioma. He also suggested surgery as per the 1st hospital. His surgery
seemed to be a little less aggressive and he said there would be little tongue
disfigurement and that speech would return to normal after about a month. He would use the
laser to excise the tumour but not to shrink it. Saying the blood vessels in the tumour
are probably too big and bleeding would be difficult to stop.
I will send this doctor an email explaining
about vascular malformations as I didn't want to preach to him on his home turf or
embarrass him in front of his staff.
When I questioned him about it growing back,
he didn't seem to be able to grasp that possibility. I didn't want to waste any time there
but the surgery he offered looked promising. He would make a small incision above the
tumour running parallel to my tongue with the grain of the muscle tissue and then laser
around the edge of the tumour to remove it.
If I chose this hospital, I will have to go
through a lot of the same tests all over again..... Going to New York seems a little too
expensive and there are no guarantees that Dr. Waner would end up having to do the exact
same type of removal they are talking about here in Japan. I'm still thinking about going
over just so he can see it in person. (It's a good excuse to go to New York as I'm ever
going to get anyway!).
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History
Back in 1994 I awoke with a painful lump in my tongue. A pea sized lump in the front left
hand side near the tip. I can't recall having ever damaged that part of my tongue or if
there was anything wrong with it the night before. All I knew was it hurt like hell.
After a few days it hadn't gone down or changed in anyway so I went to a hospital, which
in turn referred me to a nearby dental hospital that specialised in tongues? [Nichidai
Matsudo Shika] for them to have a look.
Have a look they did. They probed, pressed, pulled and photographed my tongue. About 4 or
5 doctors had a good old look at it before I was sent down to have it put through the
ultra sound. After about 7 hours of all this they came to me and told me it was not
malignant and that if it got bigger to come back. I was sent home. No explanation as to
what it was or how to treat it.
The lump finally went away but the tissue in my tongue seemed to be very different to the
touch. Over the years I got used to it.
I knew it was a little strange but it didn't give me much trouble. Sometimes it would
swell up; usually after a stressful day coupled with a hot beverage. Sometimes it got very
painful for a few days, sometimes it almost seemed normal. But it was never the hard lump
it was at first, so I thought, that was what I had to put up with every couple of months
and that the initial lump had caused some irreparable damage.
Fast forward 10 years to March 14th 2004.I had a very busy day
up early
drove about an hour out into the country where I had a hard 2 hour training session with
my cycling team. Afterwards drove home, had a shower and then jumped on the train and went
into Tokyo to catch the St. Patrick's day parade. I didn't eat much and may have been
dehydrated as well. By the time I got home my tongue was starting to ache, in fact it was
so sore that I couldn't even spit out my toothpaste wash or eat anything. It was very
painful. I rested it and had a few ice creams and cool drinks to cool it off and try and
drain the swelling. Although there were no hard lumps in it the area had turned
purple over the years. It seemed like there were two small balloons in my tongue that
would fill up with blood but would not deflate easily. Sometimes feeling like it would
burst through the side of my tongue to relieve the pressure. I figured that there must
have been a damaged vein in there and blood was leaking and not draining away properly and
that hot drinks only made it worse; that the initial hard lump 10 years earlier had
damaged the capillaries.
I was now at a stage where I wanted the doctors to have another look at it. I was
tired of putting up with the recurring swelling and discomfort.
I know what you are thinking! 'Why did he wait ten years to get a second opinion?'. Well I
had done a bit of research on the net over the years and had earlier found a tongue expert
in Hiroshima via the net as well. He had a very good English homepage. I asked him a few
questions and explained my symptoms. He told me that I had a HEMANGIOMA (it is actually a
Vascular Malformation as hemangioma only occur in new new borns) and that he would look
into where is the best place in Japan to have it looked at. A few days later he mailed
back with the address of a hospital. The same hospital I had been to 5 years earlier. Not
wanting to sit through 7 hours of probes again, I postponed my visit. The last thing I
wanted was to have them say, 'Yep, you need to have your tongue amputated!'. I steer clear
from medicine and doctors and only ever go to them after car accidents or broken bones.
(Had plenty of both of those). I like to let nature take it's course. I figured that it
may be bad now and need surgery or it may stay this way for ever. I opted to put up with
occasional discomfort in fear of the knife.
The discomfort finally became too much so I
went to the same hospital, but this time I cut a few corners. 3 of my students have a
connection to the head Professor (Ikemi) at the hospital. (This being a University
hospital for dental students). So, I went straight to the professor's office by
recommendation from one of my students and exchanged pleasantries where upon he asked me
to stick out my tongue. A non-plussed expression and he led me off to the waiting room for
Dr.Kano to take a look. After jumping the queue of about 80 people who looked as if they
had been waiting all morning I found myself in a dental chair. I had a good idea of the
problem by now after years of living with it every day, and was not surprised when the
doctor told me it was a benign tumour. The other Professor though, let out a sigh of
relief as he thought it had been cancer.
Doctor Kano (the head surgeon) didn't waste any time to tell me it needed to be removed.
The risks of cutting it and passing out from blood loss were high. I once passed out at
the Red Cross after giving 400ml of blood. If I was to cut my tongue and have nobody
around to get me to a hospital I'd likely pass out and bleed to death in a matter of
minutes.
A Vascular Malformation.
'What is that?', you must be thinking.
To tell you the truth, I'm still trying to figure that out. I'm still getting over the
fact that it is not a hemangioma.
Here
is what I found on another homepage.
April 23rd 2004
I have now made about 5 visits to the hospital in preparation for the operation. A very
nice Dr. Sakamaki organised most of this work.
X-rays.
Blood tests.
Blood pressure.
MRI's
discussions.
The next visit is for them to take as much as 400ml of blood to be put in storage and
possibly re-used during the operation
Everybody says get a 2nd opinion or go back to Australia etc etc. However what happens
when you get a 2nd opinion. Do you assume that somebody is lying if the opinions vary?
Which one do you go for? The one that will cause the least pain?
I believe that the hospital I'm going to is the best place in Japan for this kind of
surgery. I can't really afford time off work either to be shopping around.
I once went to the dentist a few years back and he said, Oh, you've got a HEMANGIOMA, I
might be able to laser that away for you!'. A year later in the same place the same
dentist says, 'Oh, you've got a HEMANGIOMA, very difficult to treat those!'.
I'm still not sure if the operation is necessary. One other doctor I saw there in the hall
was also an ex-student. She told me 'Oh, it's easy. They'll just suck it out threw a small
hole.'.
That made me feel a lot better. The words non-invasive surgery came to mind and I kept
thinking of how easy this was going to be.
On another visit though the Professor told me the tumour was a whopping 2cm ball and
that he'd have to remove a lot more tissue to stop it growing back. My happy demeanour
began to disappear. He told me my speech & taste would be ok but my tongue will be
disfigured. Me, the English teacher!!!! My tool of trade is going to be
disfigured. My grammar hammer disfigured. How am I going to teach English with a
disfigured tongue? Missing more than 2cm of what is there now? My reasoning now being, my
tongue is disfigured now and I talk okay, so why won't I be better off after all this is
finished.
More research on the net and the horror stories that go with them.... tracheotomies for
breathing during and after the operation, intensive speech therapy classes for months
afterwards, 2 weeks minimum stay in hospital until it is safe to leave. (I could easily
bleed to death via the tongue as it is difficult to stop bleeding there.)
The biggest worry here is, that my tongue is my main tool of trade, my bread & butter
in more ways than one.
Will this be the end of my ten year teaching career or will it be the beginning of
another?
I'm no Lance Armstrong or Christopher Reeves, but I am determined to beat this and carry
on regardless!!!!
My next appointment is May 15th where I will report back here. I'll also add some before
& after photos so you can see what this is all about.
2004 May 9th. Last night, by email I
contacted a Doctor in New York who advises against surgery.
Milton Waner MD FCS(SA).
Beth Israel Medical Center (Singer Division)
New York
He appears to be the best doctor in the
world on the subject at the moment so I'm taking his advice very seriously.
"...Concerning your
tongue you do not have a hemangioma, you appear to have a venous malformation. This is
quite common (in my practise) and can be quite easily controlled with one or two laser
treatments. This opinion is based on the history you have given me and the photographs I
have seen. Naturally, I would need to see you in person to confirm this. However, I
must say that my level of confidence is very high. The likelihood of this being a
hemangioma is zero since adults do not get hemangiomas.
Under these circumstances, I strongly urge you to avoid surgery since this may well effect
your articulation and this could be permanent. Laser treatment on the other hand is fairly
innocuous and there is no risk of blood loss. It is also extremely unlikely to effect your
speech. I can refer you to several patients who have undergone this..."
May 14th 2004 Turning Stones.
Today I went to Nichidai Matsudo Shika
Hospital to discuss a few things. I met two Professors and the doctor who has been seeing
to me. They were aware that I am interested in the possibility of getting laser treatment
rather than having surgery. I had informed them via email of Dr. Waner and they had also
done a bit of reading up on the 'new' clinic in Beth Israel. I cancelled my operation that
was scheduled for June 15th and told them I'll report back in August with my final
decision on the matter. They also wish to see any results I have at other establishments
to either learn or say 'I told you so'. I trust them and in the last instance
would not hesitate to have them do the surgery they have in mind.
They still feel that the tumour is too large for a laser to be successful. Stating that
lasers work well on thin flat surfaces but probably are not much use on bulbous tumours
the size I have. They are happy for me to seek opinions and are not holding back or
arguing. They have even referred me to Japan's #1 laser surgeon next Monday to seek his
opinion. I'm almost certain that he is going to say it is too big for laser treatment, but
will see him to make sure no stones are left unturned. Over the next few weeks I'll get
copies of my MRI made up and send them off to Dr. Waner in New York. The hospital I see on
Monday may want to take a biopsy as well to rule out cancer. I'm starting to wonder
whether I should just leave it be and hope it has stopped growing. If I see any indication
however that it is till growing I will be forced to make a decision. This morning I got an
estimate from Dr. Waner (ballpark figure) that it will probably be about $8000. I won't be
covered by insurance either. I'm quite happy to pay that much to have it go away, but even
Dr. Waner says it may come back again and that I would most likely require 2 sessions.
That's enough money to put one of my sons through College. If I need laser treatments
every 5 years or so, that adds up. If I have an operation however I will be losing tongue
tissue. That may render me unemployable if my malformation grows back every few years and
I'm forced to have more surgery....
Damned if I do & damned if I don't. For
now the best solution may be to just keep a close watch on it and be ready!!!!!
Note that it is not in a painful stage
or swollen beyond normal. When I stick my tongue out it is more pronounced, when it is in
my mouth relaxed, I don't think it sticks up much.
Stay tuned!!!!
Your thoughts are welcome but try and keep it positive !!!!!!
January 27th update.
There has been no change in the lump and I
have not had to visit the doctor since 2004. So far so good.
