What is your quality of life after a partial maxillectomy?

Thank you so much 😊 we are having regular visits.
Does anyone have experience with there being a positive surgical margin after the surgery, including nodes affected and perinural invasion?
Would be interesting to hear of people’s outcomes and how much time the surgery alone gave them. Or whether all that can still share experiences had both radiation and chemotherapy?
Thanks in advance

@coolcakes I see I'm a year late (sorry! perhaps it might help someone else) -- husband just had HPV small palate surgery on 3/23/26 and so far positive surgical margin for 2cm T1. They removed all lymph nodes for precaution. No radiation or chemo needed at this point. It was a choice to go with surgery or radiation and from going through this Mayo site we found the surgery an easier option. So far so good and crossing fingers...

@nnurse I am 2 years post surgery. I have the orastretch and use it not daily but very often. It really helps. I also do swallowing exercises and had therapy at Pardee Cancer center in Midland, Mi. for most of the time since surgery. Radiation has caused a lot of problems including excess saliva and pflegm'
I have definitive obturator and have more problems than I had with the previous two. But reading this I see I am not in the minority.
My life has changed totally in the last 2 years. I have trouble swallowing so my diet is not a healthy one and foods that slide down are usually not healthy. [ice cream etc] I have lost over 30 lbs and I was always on a diet. Now I hate to get on scale in case I have lost a pound. I have all the problems mentioned. I don't think I had a choice with radiation. I did not want it but my surgeon said it was necessary even though margins were clear. I still am monitored 3months but hope I will be on the move to 6 mo surveillance when I go May 27. I have to travel to Ann Arbor [U of M] which is over 2 hrs away. I have to pay a driver each time as my husband wont drive. It is a hard battle but am here to talk about it.

Has anyone had their jaw rebuilt due to nucrosis of the Jaw bone from radiation after salivary gland cancer?

@vickimartin Yes. Five years ago at Mayo Rochester. They used a section of my fibula to do the rebuild. A rather lengthy surgery and a bit of a tough recovery but far quicker than bouncing back from cancer treatment.
If you want any information about this procedure, you can ask on this feed or in a private message. It is a rare procedure and only done well in a few locations around the world.

@hrhwilliam Thank you for your reply. It is the surgery that I am preparing for. Lots of jaw scans and leg scans. I think it will be done at the University of Chicago.I will be greatful for any information you will share with me.

@vickimartin Please ask your surgeon how many of these he/she had done. If the answer is less than ten, you should consider going elsewhere. It is a very complex surgery and people have gone through it twice because of failure caused by mistakes.
On the other hand, when successful as in my specific case, it feels great to have full function of the jaw back without worry. I can eat corn on the cob or an apple, which was impossible for years.
As far as walking after removal of the fibula section, it isn't to difficult to work that through inside a few months. Some phantom pain might be experienced, which for me went away after three years, and then it was only brief pain encounters.

Thank you very much for the information that you have given me. I will definitely ask the doctor how many time he has dine the surgery. I live alone. Do I need someone to stay with me after the hospital stay?

@vickimartin you will need help for the first two weeks after leaving hospital. Likely you will be on a nasal feeding tube, which requires your meds to be crushed and diluted with water, followed by insertion into the feed line.
Help with bathroom, bathing, and general getting around is also important. If you have no one, there are facilities you can go to that will get you through. Check with your surgery team. They should set this up for you.
Hospital stay is usually four to seven days. I wouldn’t be in a rush to get away from that level of care. Often a swallow test and walking/stairs test is required prior to home care.