My website page about my tongue (read it first) gets more hits from people than any other page I have made on the internet. It seems that the problem I have is common and advice is limited. Some people may like to contact me and ask questions about it. Therefore I decided to make this blog entry that allows comments and Google will pick it up a lot faster than the other page. It has been almost 5 years since I wrote that page and little has changed. I haven’t been back to the hospital. The tumor may have grown a fraction bigger but to be honest I can’t tell. It used to feel like two small balloons in my tongue it now feels like one.  The advice I got here from Dr. Waner is my main reason not to go back to the doctor’s here in Japan.

Milton Waner The Vascular and Birthmarks Institute of New York — a Center of Excellence
for Pediatric Vascular Abnormalities and Malformations

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…”

The doctors in Japan are very good but they don’t seem to understand that if they cut the tumor out by scalpel it could come back again. A lot of tongue tissue would be lost in this kind of operation as they’d have to scrape the tumor off the good tissue and I can’t afford to lose any of it, especially if the problem will return a few years later and the procedure needs to be repeated. My tongue is not so bad now. No reason to have it permanently disfigured and no guarantee it will be fixed.


I am a lot healthier now than I was before and this may be the reason it has stopped growing. I cycle 400 to 900+ kms a month, I eat better, I drink less, I work less, I sleep more etc.

It may one day decide to get worse and that is when I will need to get it fixed. A trip to Dr. Waner is not out of the question but insurance wouldn’t cover it and I don’t have that kind of cash available at the moment.

With airfares, follow ups, accomodation, time off work, it could add up to well over $30,000. There is also the possibility that it would need to be done every 5 or so years if it was to keep growing back. I’m hoping that the same procedure may one day be available in Japan.

I’ve heard one story where somebody had regular surgery 3 or 4 times and the tumor just kept growing back. The tongue is now like a little finger. Not much left of it.

So for the people who keep looking at the original page on my tongue, here is the follow up. Please feel free to leave any comments or ask any questions.