Um, wow. In desperation we turned to this site for some support and insight. Indeed there is plenty here. For a year now my love has been fighting the good fight of osteoradionecrosis 8 years post cancer surgery. It presented as fistulas on the cheek. We spent the next 4 months getting shuffled from Dr. to Dr. Then in Feb. his jaw fractured IN HIS SLEEP! Back to the cancer surgeon. He had surgery 1-to "clean out infection" followed by 40 HBO dives. Surgery 2-free flap surgery to replace mandible (surg 1 failed)in April. Surgery 3-still infected, remove titanium strap from Surg 2 in Aug. Surgeon gave him clean slate in Aug. 1 month post surg. Today, he is still weeping from surgery site. He was on augmentin from 9/14 to 5/15. Will this infection ever, ever clear up? His frustration level is so high. His self-esteem so low. He wants nothing to do with doctors right now. I don't know what to offer him in way of support anymore. Any suggestions appreciated.

Welcome to OCF, jewells. Im sorry to hear about all the complications your loved one has endured. The frustration is completely understandable. Ive had this surgery myself and I know its not an easy one at all. I needed 8 months of IV antibiotics to help heel the surgical site and battle infections, plus way too many HBO dives to even count anymore. If he is on augmentin for so long and its not working then maybe a stronger antibiotic or a different one would help.

First, if radiation was given as a treatment for OC then thats probably why the HBO was needed and also why there are heeling issues. Im sure his doctors are doing their very best to help. So often they are at a loss when heeling is impaired.

Is there a wound specialist department at the treatment center? What about a therapist who treats cancer patients? Depression is very common among oral cancer patients, many take anxiety meds (caregivers too). He can also join our group and we can help give him info and support. Im sure he probably feels so alone right now. Knowing there are many others out there like himself can be very reassuring. Ive been where he is and Im now 6+ years later and Im doing very well. Recovery from this type of major surgery is a long road. I felt like I would never recover and be able to have any kind of life anymore. It took me well over a year post surgery to be ok again.

Since you mentioned being bounced from doctor to doctor, does this mean he is not being treated at a comprehensive cancer center? If its an option that he is able to do, then I would suggest seeking out further treatment at one. Sometimes going to the top CCCs is the only place to go when there are complications. They treat hundreds of these types of unusual cases and have the latest methods to help when problems occur. I understand his frustration but it cant hurt to at least give it a try.

Best wishes with everything.

List of CCCs



PS... As a caregiver, take some time for yourself too. Being a caregiver is a difficult job. Be kind to yourself.

Okay - do whatever you have to medically - that is first and foremost.

THEN...

Up his protein, and iron, and add some supplements.

I say this because diet is SUPER IMPORTANT.

I imagine he isn't eating as well or as healthfully as he should be. This is probably due to what he is going through with regards to treatment and the fistulas etc...

try having him down a couple of high powered protein shakes daily. Limit sugar, and up his iron intake.

Manuka honey is natures peroxide. After each meal he needs to brush his teeth (assuming he has some) maybe waterpik to clear out any gunk hiding in his mouth, and then maybe swish with manuka. (by eating I include drinking if he's on a liquid diet)

wound healing is tied to immunity, and this is tied to diet. Also cleanliness - Bacteria, builds after eating or ingesting anything. minimize the bacteria, minimize the growth of infection.


Hope this helps... hugs