Tony, in regards to your mouth opening only 1 finger wide. Thats called trismus or better known as lockjaw. Yours is a severly restricted opening, I know cuz mine is the same width. This is something that you will want to work on right away after you ask your doc. You will need to do exercises to help your limited opening. Stretch your mouth open as wide as possible several times per day and hold it for several seconds. It will not improve unless you work on it. Make sure you ask your doc about doing any stretching exercises before you start, you dont want to tear something that is still healing.

Im not a HPV expert like Brian or Davidcpa but I do know that a vaccine is not going to help. HPV means your chances of recurrance are less but it does not change how you are treated.

Here in the US, PET scans are usually done at least 3 months post treatment as long as there isnt swelling. That would give a false positive. Then we usually get them every 6 mo before it goes to yearly. Not sure how frequently its done where you are. With the big surgery you went thru, there could be swelling for over than 6 months.

Thankyou Christine, that sort of knowledge slips through the cracks with all the other stuff you are getting told from 28 diferent directions! I will ask my Doc and start stretching. I will ask about PET scanning as a little time goes by. I pushed for a second PET after first surgery. They where not going to do one for a few more months but I pushed a bit and that scan found the primary tumor in my tongue!!!
Tone

Tony,

Actually the verdict is still out on whether or not the vaccine may help to prevent future infections, even at our age. Depending upon your active sex life, it may be worth pursuing. If I were single I would get the series of shots but since I am a faithful 20+ year married old fart whose wife now gets regular HPV "checkups" I'm passing.

When I posted that you should get tested I think it was in response to your mental state post Tx and all I was suggesting was that if you tested positive it may (certainly did for me) give your mental outlook a boost.

[quote=Tony Australia]I and some consultants suspect that HPV could be a cause. What I dont understand is even if I get a test and it is positive apart from a better prognosis can I do anything to hurt the virus so as to avoid it doing the same again. Would a vacine help once infected???[/quote]
When I first came on these boards in 2006, the husband of one poster, Gail Mac, was taking part in a Phase 1 (earliest) trial that Johns Hopkins was doing to develop a therapeutic vaccine that could help patients previously diagnosed with HPV shed the virus more easily upon any re-exposure. A researcher at Hopkins (now at Ohio State U.), Dr. Maura Gillison, was a leader in identifying HPV as a cause of oral cancer (in large part due to research support from OCF), and the tumor taken from Gail's husband was among the earliest -- at least among participants on these message boards -- to be identified as HPV+.

Here's a thread about it, and a follow-up. I don't know where things stand now, though. (This is different from Gardasil, which should be given prior to any exposure to HPV -- hence the targeting to teenagers before they are sexually active.)

Aside to Tony: I love Perth. We lived in the Middle East for a number of years and have some very good British friends from those days who made Perth their next stop -- and are still there. We visited them in 1993, and I'm hoping to get back there next year.

I hope all is well for you. I just finished my 2nd week of radiation and the side effects are crazy already. I was told by my doctors that there is a 50% chance that i will make it past 5 years. And me being 25, I didn't like hearing that I might not make it to 30. But like everyone is saying, don't listen to what docs say right now. Just fight for what you want. Docs told me I wouldn't be talking for 6 weeks to 3 months, and when they plugged my trach, i was talking pretty good, just couldn't say my ls and rs. But now its getting worse, cuz of radiation. But I know it will get back to getting better.

Good luck with your journey. I cant imagine what it would be like to lose your significant other. But I do have to say that the people on here are so caring and supporting. Even though people live miles apart, they still support you like you are their neighbors and sometimes family!!

I'm sure Brain can give a better response but I think Maura's research kind of died when she left Hopkins. I also understand that there have been other attempts to do essentially the same thing that Maura was trying to do to boost the immune systems response in a previously HPV exposed patient but they have all been unremarkable. I have talked extensively with Dr Anna Guiliano, HPV researcher at Moffitt. She and I have been on TV together and also traveled to the CDC where we both testified on behalf of the male Gardasil vaccination program. She is the one doing the research and testing for Merck and she has told me that if she were me and I had an active (multiple partners) sex life that she would get the shots.

Welcome Tony
the worry is natural...we've all been through something pretty intense. And it would be nice not to have to go through it again!

Stay as positive as you can and take the stress out of your life (where possible!)

cheers
jon
(and go the socceroos!)

Here is a bigish question, does anyone know what skeletonization of the Trapezius nerve means and as I do a lot of weight training can this make it better or worse? My specialist described it as hanging in the wind and may get better, that was it???

Thank you all so much for your compassion. It is amazing to find you all that have been through so much and are still going through intense things as we all know it doesn�t stop at one operation. I have a million questions and I feel I am in the right place to ask without judgement. After all it is said "the only stupid question is the one you don�t ask" I like that one. I will learn more where to post and how things work. You all have my offer to personal e- mail me. I don�t check my P.C every day but would always try to get back to you.
Kindest regards
Tony

Trismus getting worse! does any one know of other treatments??? botox, cortisone stretch while sedated, anything! Have seen the hospital physio and she srtetched my mouth last week and have tried at home with tongue depresors. The pain is the worst I have had from everything including the main surgery and my mouth is geting worse. I bought a tiny tooth brush but if I lose one more mm I wount get that in inside my mouth. it also is starting to affect speach. Teeth exactly 1mm apart at full stretch! Help!
Tony

Tony, trismus is something you must contiue to fight everyday. Keep doing the exercises and use the tongue depressors several times per day. If you take a hot wash cloth and place on your face before you stretch, it will help loosen the jaw muscles. Since it is painful, take pain meds prior to exercising too.

My doc advised me to stay away from botox since that is just a shot that paralyzes muscles.

There are a couple devices that are on the market to help with stretching your mouth open. Problem is that your trismus is so bad you probably couldnt get the device into your mouth.

Try using what hospitals give to patients to get a tiny bit of water into their mouths. Its like a piece of foam on a stick. Thats what I have used for years to clean my mouth. Its called Toothette Oral Care (disposable oral swab). I found the product on Amazon.com. If you order it thru the OCF forum link, then OCF gets a small kickback. Here is the link.

http://www.amazon.com/Toothette-Min...&s=hpc&qid=1279713016&sr=8-4