What is your quality of life after a partial maxillectomy?

I went through the same or similar surgery. Two weeks into radiation, I couldn’t eat anything. I lived on Boost rich chocolate 360 calories each. To keep my calorie count up, I drank 4-5 a day. It was the only flavor I could tolerate, and I tried others. It depends on what flavor tastes good to you. My surgeon and oncologist said you can live on them, as they have everything you need. I did not need a feeding tube. You won’t either if you can get enough calories. You will get better. It’s a very slow process but it will eventually go away. As you start eating more food, you can decrease the number of Boost you drink. I could eat flavored cream of wheat, fluffy scrambled eggs, applesauce, ice cream, smoothies with anything in them that sounded good-especially peanut butter in my smoothie-extra calories. I couldn’t tolerate coffee for a long time but I could drink tea with honey. I kept a calorie count and it worked. Don’t get discouraged, please. Try to keep yourself busy so you don’t think about it all the time. I live in Florida so I would go outside and work with flowers and other plants as much as I could. It gave me a more positive attitude, which I believe, helps with healing. I hope you have something that you can do that will help you.

Hi Karey,
Thank you for this encouragement. Your comments are very helpful!

Thank you so much for all the insight do you wish you did a flap versus an orbutrator

Thank you to all who contributed to this article. I am presently going to be scheduled for surgery for very similar cancer removal...metastatic renal cell cancer on maxillary jaw (small section), partly in sinus. I was offered total reconstructive surgery or the obturator. After reading everyone's experiences, I'm glad (???) I chose the reconstruction. I hope I'll have a better outcome with it. They (MSK) said I'll be "finished" after surgery (7 in hospital, surgery 6hrs), no cancer left, no follow-ups. Everything done during surgery....partial reconstruct of maxilla, teeth, cheekbone reconstructed.
I'm praying for a good outcome and I pray that you all continue to conquer these obstacles in our "new normal". Thank you again for the info and I'll be updating after my surgery.

Hi there,
My 54yr old otherwise fit and healthy husband is 4 weeks post surgery for cancer in his jaw. They did an almost complete Mandibulectomy leaving only 2 back molars.
Can anyone t please share their experience as to how long it took for the swelling to go completely down, both internally and externally? And was there anything that you did in particular to help reduce the swelling?
Thanks in advance

Hi @coolcakes Welcome to our Head and Neck group.
Mandiblectomy with replacement bone graph? In addition was radiation involved also? The reason I ask is pertinent to the recovery time, assuming an otherwise healthy person.
I had this surgery with a fibula free flap section used as replacement at age 64 and it was about four to six weeks for the swelling to subside enough to look somewhat normal. Six months before everything was healed more or less. Initially I looked like John Merrick, the Elephant Man. But within two weeks I began to recognize my own reflection in the mirror.
Internally, nerve issues for the first two years although I occasionally still experience periodic short lived nerve sensations. My leg healed to painless after about nine months yet now almost five years later I am having walking pain issues. I will have that looked at later this year.
I had prosthetic teeth implanted but not sure I would recommend that due to easy infections in the post attachments area.
Reduce swelling? Tylenol basically. Aleve works well too. A heating pad on the area seems to soothe and promote healing.
Let me know if he has questions. It’s a rare surgery but easier than chemo and radiation treatments.

Mediate maxillectomy followed by radiation and chemo in 2006, I am still having late effects of radiation contributing to some accumulative TBI, loss of smell hearing issues, dry eye, and cataracts plus dental problems.

Hi,
Thanks so much for your reply, it is super helpful and appreciated.
My husband’s surgery was 4 weeks ago. His swelling has gone down a lot but he feels like it has plateaued. The inside is particularly frustrating as it feels like he always has a full mouthful of food so he is really wanting that to subside. Does that ever happen?
We were told that radiation does reduce the internal swelling of the flap- do you have experience with this?
He is taking ibuprofen and voltaren for inflammation.
Thank you.

I would think things should be improving soon. If not, a consult with his doctor or surgeon could give him answers.
My biggest issue was the permanent numbness of my lower lip. I don’t know if I will ever get used to that. I do recall inside my mouth was swollen for some time and I had issues drinking liquids, mostly due to the numb lip.

Good old fashioned hot and cold packs might give a little relief. The cold eases swelling and warm will stimulate circulation to the area to remove fluid swelling. My grandfather was an orthopedic surgeon and always recommended alternating 10 minutes of cold/10 minutes of hot. Also does sucking on ice or popsicles help him at all? My Dad had that surgery back in the early 90s and used a lot of ice chips and very cold drinks in those initial weeks postop. I just do not remember how long it took for all his swelling to go down. Sometimes there can be an accumulation of fluid or drainage after a surgery so checking back with the surgical team is important. I imagine you have regular visits with them.