What is your quality of life after a partial maxillectomy?

When you say partial what do you mean? I lost on one side all of my upper teeth, upper jaw, and hard palate.. i now have an obturator to improve speaking and swallowing. Will you have radiation? Will you be wearing an obturator or having reconstructive surgery.? Im quite amazed Mayo did not accept you. Is this cancer related?

Yes, cancer related. You describe exactly the surgery that has been recommended. Yes, an obturator; radiation possible. Mayo felt that they could not add to the care that is being received here in Colorado. Still seeking a second opinion before going forward. Can you speak to the quality of life you now have? Would you do it again? Thanks so much!

Interested also in the comments here to compare with partial mandibulectomy. One would think a maxillectomy would result in sinus issues primarily.
I am actually impressed by Mayo staff when they bow out of care where they feel they cannot enhance or improve upon that which a patient already has. I have seen this in cancer treatment in particular as in other surgeries such as joint replacements/repairs such as BHR.

Hello coquest23,

I cared for my former partner who had osteogenic sarcoma of the right maxillary sinus, diagnosed in 1997. She is in remission.

She had a partial maxillectomy, as well as a scapular free flap surgery in an attempt to rebuild the bones and palate removed from her mid-face/cheek (hard and soft palate, the orbital floor, the zygomatic process, the nasal turbinates, etc.).

Sadly, the microvascular reconstructive surgery failed within 24 hours and she was fitted with a prosthetic device--an obturator--to take the place of her palate and lost teeth.

The prosthetic will take some time to get used to. Plan on getting close to a dentist whose specialty is prosthetics. The obturator requires removal for daily cleaning and sometimes several adjustments are required throughout the year. The obturator is necessary to breathe, swallow and talk.

Unfortunately, there is less than a 100% seal in the mouth and it is not unusual for fluid to leak from the nose. Also, your speech may change slightly, again from the lack of seal between the nasal and the oral cavity.

When faced with a rare and aggressive head and neck tumor like osteosarcoma, there is no choice other than to remove the tumor and get good surgical margins. There are two options to repair the partial maxillectomy: (1) an obturator, or (2) the harvest of autograft tissue from a second surgical site (the leg or arm, for instance) to replace the loss of the maxilla and its surrounding midface infrastructure.

I hope this information is helpful.

Hello joylondon!

Thank you so much for your reply. I appreciate the time it took to go into so much detail. Can you tell me if your partner had to deal with trismus? Removing an obturator seems impossible if trismus is present. Also, was scar tissue a problem post-surgery? If so, did PT help? Or internal massage? Thanks so much for your help.

What joylondon said is mostly true in my case. An obturator aids in speaking and swallowing. You can still speak and swallow, but without a hard palate or with a partial hard palate speech has a nasal quality to it, swallowing liquids can leak into the nose since there is an open or partial opening into the nose/ nasal cavity. An obturator has an artificial hard palate can contain the missing teeth and maxilla.( jaw)Breathing is NOT changed or affected with one. You asked about quality of life. Thats a hard question because people define QOL differently. Yes, my life has changed. I had radiation after surgery and i think that decision created the most problems. Although i followed the correct instruction i still developed trismus and the cancer returned later in my neck. ( neck) dissection)So radiation was considered a failure. I now suffer from fibrosis, pain and stiffness in my neck much worse then what my doctors told me. Would i have radiation again knowing what i do now? No. I think quality of life is what you make it. I cannot eat normally, talk normally without my obturator, always carry water with me for dry mouth, pain meds for neck and jaw pain,, hearing loss from radiation,,requiring hearing aids, etc. that has been 3 hears ago but my life is filled with joy. I am alive and have adjusted to my new normal. I think it is important that you have on your team a qualified surgeon oncologist speech therapist, radiation oncologist, and physical therapist. Its a plus to have a cancer rehab program specialized in head and neck cancer in your area. Therapies should start immediately after surgery and THROUGHOUT your recovery and for years after if needed. Oh yes, a prosthodontist or maxillofacial,specialist with knowledge and experience with an obturator is essential. In my opinion, general dentists do not have the training to manage your prosthesis.

One other note. Stretching the jaw is imperative after surgery and especially after radiation as trismus will be lessened with jaw exercises. Therabite or a OraStretch device most likely would be covered by insurance. Tongue depressors are easy to come by possibly achieving the same results but I didn’t like them. Stretch stretch stretch those jaw muscles from the beginning of your treatment. I cannot stress enough how important this is in lessening trismus.

Hi Ellen2007!
Thank you for your comments - so helpful! It sounds like you have adjusted to your new life with determination and gratefulness. What you said dovetails with the comment made by joylondon. So great to hear from people who have been through this!

I was treated at UCLA and had surgery which involved removal of 6 teeth and the palate and I don't know that I ever realized there might be an option.
The surgery removed all the cancer up to the margins and that was 1 1/2 years ago and it didn't return there. I have worked extensively since that time with a prosthodontist to created the several obturators, temporary, intermediate and the final (forgot the names of the several stages). They are very skilled in adapting it to the mouth as tissues change. I never had radiation in that area and it has not returned to that area. But new cancers did appear on the lower jaw and for those I had radiation. Don't know if that was the best decision. My
QOL definitely changed in that I can't eat regular food, purees and liquids but part of that is due to the subsequent cancers complicating things. The obturator is easy to use because they can adapt it. Yes, I did stretching exercises to reduce trismus. I find I can eat puree foods without the obturator but it is essential to better speech. Good luck.

One more thought, unlike others who describe their experience, I can breathe and swallow without the oburator. Radiation did cure the lower cancers, but had many associated difficulties and pain. I had brachytherapy radiation which does create less of an impact. I will have nonfunctional teeth on the final (definitive) obturator, but that is when they are sure the tissues etc. are not going to change. Since it is only part of the mouth, the appearance is quite normal.