I want to Thank each one of you for your kind words, prayers, thoughts and well wishes. I do not know what I would do without my new friends/family. i Love You Guys!
Now for the update. The surgeon I saw today took charge and has a treatment plan he is putting in place. Thank goodness it is about time. As my primary care Dr said on Wednesday this is not considered an emergency because it is not cancer and I am not septic yet. I may feel like I am going to die however I have been put on the back burner long enough and the surgeon, infectious disease Dr and my primary have all agreed that this was not acceptable and if no one took charge after yesterdays appt they would make some calls and end this waiting and finger pointing that has been going on the last 6 or 8 weeks. The 2 surgeons at the UW were each pointing to the other saying that the other one needed to do surgery when actually they both need to do surgery. OK enough whining and my official diagnosis is osteomyelitis of about half the entire maxillary bone and that is why my nose and my eye hurt on that side. The intense bone pain is what is the worse I can not tolerate that at all. It makes me feel like a whining baby, but ouch. I don't know if any of you have had a dry socket after an extraction but that is what it feels like 24/7. The osteomyelitis has caused a hole in my sinus and is eroding my bone slowly. The hole in my sinus is draining pus and is causing secondary bacterial infections in my sinus, throat and lungs. It is also my understanding that my sinus is not working well and is not draining except when it finally gets so bad and backed up that it just kind of leaks some of the grossness out. I had been off of the antibiotics per the infectious disease Dr so that when I could get surgery scheduled they could get a better culture and hopefully get the right antibiotic in the right amounts to finally clear this up. Well I ended up after only a week off getting another secondary bacterial infection and had to go on the antibiotics again and I am to stay on them now until a week before surgery. The treatment plan is to have hyperbaric oxygen therapy 3 hours a day 5 days a week for about 6 weeks. Sinus surgery to open up and make a really big hole in the side of my sinus about 1cm. I will also start IV antibiotics (I believe the infectious disease Dr will make the final call) and will be on the antibiotic for about 4 months or possibly longer. I will not have surgery on the bone yet as the surgeon wants to have me start the oxygen therapy first and re-vascularize the area first. As the surgeon said this therapy wil not get rid of the infected bone but it will make it worse and he believes the marginal bone and bone that is extremely swollen could actually get better. By doing this he will be able to tell exactly where the infection is hopefully then he can remove 3-4mm of the bone instead of right now all they can see on the CT is an area the size of a golf ball that goes from my nose to mid way between my ear and nose and from my lip to midway up to my eye. He already removed part of the bone with the last surgery in Jan. but left as much as he possibly could to stabilize that area of bone. He also said at anytime during this treatment we could change it if needed and just remove all that bone but you can not put it back once you take it out and he wants to be 100% sure before he goes to this extreme. The surgeon did say again that he could not reconstruct this area because the infection can seed itself in small areas in the good bone that would be needed to anchor the bone grafts, pins screws and what not. This would cause the new bone to get infected he said right away and they would then have to take out more bone. That would create a big sunken area in my mid face and I would not be able to eat. So I definately do not want that. So if you all can keep up your prayers for removal of a small area of bone and the cure of the infection. Oh I almost forgot he said that I will have to probably have multiple surgeries during and after oxygen therapy to take out the small areas of bone (I hope small anyways) that show up as infection which he believes will not take to long after starting therapy. Also he wants me on the antibiotic even though it wil not cure the infection without surgeries to clean up the infected bone because he does not want me to become septic which of course can be fatal. I will need to stay on the heavy duty pain medication for the next few months at least as I will still have the bone infection and that is what is causing this extreme pain. He said that was fine and not to worry about it they will wean me off when they think all is gone. I hate taking it and I am still worried about it but I have to listen to my Drs on this one. I was having physical symptoms of untreated pain and my infectious disease and ENT surgeon called my primary and told him I was under treating the pain and they thought it was best to treat the pain as you do not heal as quickly or as well if that is the case..........or so they told me anyways. What do all of you think about this?
I have a very positive attitude. I feel good about the treatment plan and I also feel at peace with it so I know it is the right thing to do. I can not wait to have no more fevers, drenching night sweats, nausea, vomiting, infection type headache (Kay you know what I am talking about), fatigue, no appetite, facial swelling, one black eye (they say that is from the infection, weird huh) and last but not least pain. I can and will get through this with the help of all of my new friends!
Thank you again my friends I couldn't do this without you.
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PS My wonderful husband set up a trip for the 2 of us alone to go to Palm Springs leaving May 1st and returning on May 11th or 12th. He put together the whole trip by himself to surprise me and has someone to watch the dogs and my wonderful son and cleared it with my boss. How awesome is that? I'm one lucky wife if I don't say so myself. He had to tell me because of everything going on with my health. He called our friends that we stay with (they are more like family) and told them about my health problems and so nothing is planned and I can nap anytime and they will take very good care of me. I will have my pillows fluffed and lots of forehead kisses. The surgeon knows about this and said that would be perfect as he will be gone part of the time but they need to get everything pre certified and the oxygen therapy can be tough with some insurance companies but osteomyelitis it is a known and approved treatment for.
