The Dr Marx from FL that Paul mentioned (several posts above this where he gave the link) is who is credited with creating The Marx Protocol. Thats where OC patients who have had rads do 20 HBO dives prior to and 10 more after an extraction or similar major dental procedure. Heres more info and other related things that may help ....

OCF main site ---- Osteoradionecrosis and HBO

Im not sure if you have considered going to another facility for your husbands surgery. There are some airlines that fly cancer patients for free or for a minimal charge for treatments. Also many of the countries top treatment centers have housing nearby for free or substantially discounted. There are many other places that might be helpful included in the link as well.

OCF main site --- Financial Assistance


Best wishes with everything!!!

The peg tube isn't the worst thing if it's needed to get through anything, at least temporarily. I kept mine, my 2nd, for 5 years, and used it through several tteatments, and surgeries. I inquired about a peg, which I had removed 2 years ago, before this surgery, as opposed to a nasal tube, but was told I would be eating after a few days, and did, and wouldn't need it.

As far as weight gain, I haven't fully gained back all of my weight lost, over 110lbs, from my initial chemo only in 2009, and has taken since to gain back 50lbs or so to 170lbs, and maintain it, although I went through several more treatments through the years with the usual losing and gaining. In. 2013 I was able to get up yo 200lbs, but lost it with another treatment, and besides, my nephrologist didn't want me to gain more anyway since it effected the kidneys, so I really haven't pushed myself to gain the weight back since 2014 when I finished Chemorafiation.

The weight loss from this surgery was sort of self imposed too since I didn't want to eat much while being bed ridden, and not be able to use the restroom, I guess a good reason lol, then I was reluctant to eat the pureed food just on its appearance lol, but you get used to anything over time, and kind of prefer a pureed diet at this time for several reasons. I was upgraded to a mechanical soft food diet, which I basically followed at home, but this isn't home, and choosing, and cooking my own food to my likeness, was choking, not eating as much, so I went back to a pureed diet.

I mow the feeling when your doctor says or gives a look that it's not good. My oral surgeon who has been treating me since 2012 from debridment, extractions, sequestromy, finally gave the look, said he doesn'l like the panoramic scan, then sent me for a CT, and apologized that he couldn't do more for me, and debt me to see his associate, Chief Oral Surgron, who his well known for his treating ORN. Even still, we all agreed to have the surgery done by my ENT, at another hospital , who is just as experienced, and did several of my other surgeries anyway, and didn't want to change teams at this point.

I hope all will be well, and the fibula is like the workhorse for this type surgery that is pretty much the standard now to do in one surgery....resection/reconstruction. They were considering using the scapular, due to difficulty walking/balance, but was told that it may be more bulky to work with, and they could even do surgery without reconstruction, but such would leave an indentation on my face/jaw, and getting dentures may be difficult through misaligned, so I settled in choosing the segmental mandiblectomy with fibula free flap.

If you have any questions, ask, and besides me, you have plenty others here with similar experiences too, which has really helped me, although I never made any inquiries myself, I read all the posts, and replies.

My husband is getting pretty good about adding a daily high calorie shake aside from eating. I think he lost 30 lbs and may have gained back 15-20, but he's not big to begin with. I'm sure the food is not like what you have at home - never is. I'm getting used to preparing meals that he can eat. I have to admit that I miss throwing steaks on the grill. I try to eat things like that when I'm eating with other people. There are so many things he can still enjoy if you "deconstruct them" by chopping them up and adding extra sauces and dressings.

So, as far as the resection, what long term issues should we know about? You mention using the the scapular, just wondering what your doctor said.

The reason the scapula was mentioned is that my left arm
is partially paralyzed from radiation anyway, brachial plexopathy, and can't raise it forward or laterally, but it's not the first choice for this surgery, fibula is, and scapula may be bulky and interfere with chewing, dentures, so I chose the fibula. I hope to get dentures one day.

There may be numbness, lip paralysis to some extent since they cut through the nerve in the jaw. I spoke to the SLP here, and it may recover, although was kind of vague. Thursday I see my team at the CCC, so will get more answers.

Here is a good post by MSKCC for their patients, which may differ somewhat at different facilities. It says mandibularectomy, which is different than a mandiblectomy. The fist is partial thickness, not full thickness or segmental mandiblectomy, I believe. Any case, it's further information.

https://www.mskcc.org/cancer-care/p...mandible-reconstruction-fibula-free-flap

It was difficult to view the link without getting choked up. I am very glad you posted it though. I need to make myself ready for this.

Hope you're feeling a little better every day, Paul

Hello Midwestwife. I am preparing to set a date to have the same jaw surgery from ORD. I live in Lisbon,OH and my surgeons are Dr Eric Lamarre and Dr Robert Lorenz at the Cleveland Clinic. I had surgery there in May 2015. They removed dead bone from my left jaw, cleaned remaining bone, then too vessels and tissue from my upper left leg, covered the bone with it and hooked the vessels to vessels in my neck. Also at this time they found my jaw bone was broke and had to put in a titanium plate. Well the bone is too far gone and this didn't help much. I have been on anti biotics every other month for 2 1/2 years because the infection just won't quit. I am in constant pain.I was given the choice before that surgery as to which way I wanted to go and both these Drs suggested the whole bone replacement but I took tissue and vessel surgery because I was afraid of the whole bone replacement.. Now it has to be done. I will be speaking to Dr Lamarre on Monday or Tuesday (Oct 10,11, 2016) to get test started for this surgery as I want to be back on my feet before next spring. I really recommend these two Drs. they are very informative in explaining the procedure and answering questions and are very very good with what they do. I'm not sure where you live but it takes me about 1 1/2 hrs to get to the main campus. If I can help wiyh anything, please let me know. I was DX in May 2008 with stage 4 BOT with nodes on the left side of my neck. I did chemo and rads then. No surgery then. Good Luck Randy


** ADMIN NOTE ****sent PM with email address ****

Hi Randy,

Thanks for responding! I will be contacting you soon

Hi Paul,

Just checking up to see how you are feeling...

Thank you for asking! It's day 28 in the nursing:rehab center, which is best at the moment for me due not having a caretaker at home. They even send an aide with me to my doctor appointments, which is nice, and haven't had that kind of help in years. I do physical, occupational and swallow therapy everyday, and nurses change the wound bandage at the different sites, daily, they watch me like a hawk lol.

Anyway, I lost 30% of the graft in my leg, it happens. It will just take extra care, and debridment for it to heal, plus I'm diabetic. Otherwise they say I'm doing well. The stoma from the trache is almost closed, but a concern was minimal food coming out when eating, and modified barium swallow showed no food, but liquid, aspiration, which I'm not sure about. The other thing it can be is fistula, which can happen, especially after all the radiation and surgeries I had, so are conveying the info to the dr being I saw the physician assistant. Next visit is with the plastic surgeon.

One thing for sure, recovery is longer than what was conveyed or I thought, but each person is different, and it's not like it was my first surgery and in better shape I once was. Each treatment, surgery, slowly wore me down, but still here fighting!

PaulB,

Hope it all gets sorted soon. Stay well, your courage is ins[irational.