My daughter , age 54, will be having the mandibulectomy and fibula free flap reconstruction, hemiglossectomy with free flap reconstruction, and neck dissection. SCC Stage IV. We are wondering about the boot, changing the bandages, and physical therapy. Was there physical therapy needed for the leg? Any suggestions for clothing over the boot?

Welcome to OCF, Reno! You're in the very best place to get info and support for your daughters upcoming surgery. The surgery your daughter is having, many of our members have been thru. I, myself have not had any "salvage" surgery using my leg bone so Im sorry I dont know how best to respond. I know its a long surgery (anywhere from 8-10 or more hours) that can take a while until your daughter is well enough to be released from the hospital. Over the years, Ive seen many here who have had similar procedures discuss PT for their leg. Im sorry but I cant remember any specifics. The mandibulectomy surgery while it may be common around here, its one of many different oral cancer surgery possibilities. Theres so many variables with things like this where you may run into the "everybodys different" scenario. It could take a little bit before someone who has been thru something similar replies. Im sure you can pick up many tips to address all your questions about "the boot", clothing etc by reading thru previous posts. That will also help you to learn more about your daughters cancer, about any other treatment possibilities. Your daughter may take to wearing skirts to alleviate any clothing struggles.

Your daughter will need lots of help to get thru this. Anyone who offers their assistance, your daughter should write down their name and contact info and tell everyone when the time comes she will let them know what they can do to help. As I mentioned earlier, the hospital stay could be a long one. Im pretty sure she will not be feeling the best while shes there. Most hospitals will allow family members to stay 24/7 with someone with this type of major surgery, thats even if their rules specifically say certain visiting hours. If its possible to have friends and family stay with her around the clock that would be a huge help. Her speech may make communication difficult so a dry erase board is a good idea as is taking an ipad with the "Speak it" app so she can type and the ipad will say what she wants. Ive had a close friend who depended on that to be her voice after she lost her ability to speak. It works great!!!

At this time, your daughter may want to eat all her favorite foods, desserts too. Her ability to eat is likely to be compromised for a while so she does not want to go into this with any cravings. If shes on the average or slim side gaining a few pounds now would also be a good plan. Tell your daughter to be especially careful about every single vitamin and supplement she takes. Even seemingly run of the mill vitamins should be run by her doctor to make sure it will not interfere with any of her upcoming treatments.

Im sure theres a million more things you will see discussed here that can be a big help in preparing for this upcoming surgery. Staying busy doing positive things helps pass the time until her surgery. Im sure your daughter will need help once she goes home from the hospital. Many hospitals will send our visiting nurses to check on patients. If thats an option, she should consider taking advantage of it. Ive had visiting nurses many times and always found them to be a huge help!

Best wishes!!!

Hi Reno!

I had a mandiblectony with a fibular free flap for osteradionecrosis. My surgery took 8 hours plus, but being vessel depleted in my left neck, the artery and vein from my chest were used, so that took extra time.

I was in the hospital for 7 days. The first day or so I vaguely remember, but about third day they try to get you up, and I sat in the chair. About the same time I used a trache, but that was taken out and speaking value placed, and started earring puréed food.

When I had the trache, I had an iPhone with the speaking app, iSpeak, but that didn’t prove helpful as I didn’t have it in recovery, and when I did get my phone, the writing was too small for me to see it. Eventually I got a writing board, after much hand sign language difficulty. If you have family, it may be better, but being alone was difficult, although once I was out of recovery and in the “step down” unit it was better.

I was discharged after 7 days, and typically one would go home, so they said, but I needed more help moving around after prior surgeries/treatments, and no help at home, so I went to a nursing home for two months. I stil had the boot on at least a week after I was there, and bandages were then changed daily. Even after I was discharged, my fibula didn’t fully heal, so I had reconstruction surgery about the 5th month.

I hope this helps!

Thank you so much for sharing your experience. We meet with the surgeon next week so are gathering our questions. She has finished 6 weeks of chemo, and PET scan last Monday. She'll have hemiglossectomy, half neck dissection, half of lower jaw reconstruction with free flap (fibula). They are talking about chemo and radiation after surgery. I know the next weeks will be challenging. Thanks for the support and information here.

Hi Reno,

I had the same surgery in January. I was 56. The boot and leg were not too bad. I bought wide leg elastic athletic pants. About 6 weeks after surgery I started physical therapy as I was starting radiation. Good luck with everything!

Going through a similar experience with my Mom, a lot of unknowns although I have a notebook full of information. I made sure she had all of her favorite foods, coffee, soda, a few candy bars the last few weeks before surgery. I tried teaching her to communicate on a smart tablet, but she had no interest. She was confused after surgery, but did okay with a white board. Does your daughter have a medical POA, just to be on the safe side?

I also made sure everything in her home was clean, no laundry, cleaned frig out, etc. Made sure she had elastic waist pants and loose shirts, flat slip on shoes with good grip. I also got an extra key to check her mail and handle things. I got a list of people she wanted me to keep in contact with. My out of town family is communicated through updates via Facebook.

One thing that has helped me with post diagnosis and post-op to keep everything straight was requesting medical records on a monthly basis. I have a binder with divider tabs so I can easily reference stuff (i.e. labs, surgical report, my own notes, questions for her doctor, treatment plan, etc.)

Surgeon wanted to start some physical therapy after she was released from ICU. I was told she would be in ICU for 5-7 days. Surgery went awesome with minimal blood loss. Big complication was breathing on her own. She is in a specialized facility to help wean her off the ventilator as she had a tracheostomy (temporary, according to her doctors).

I hold my Mom's hand a lot and talk to give encouragement, but it appears she gets agitated with too much talking. Her doctor says everyone is different and will recover differently. I prepared as much as humanly possible, but there will be bumps in the road. Take it one step and one day at a time. Take time for yourself, even if it's 30 minutes or whatever you can manage.