Doing great still..hospital staff very attentive and nice..for those of you who don't talk to me regularly..the surgery I had was an "aggressive debridement of the right maxilla (upper jaw)"... the incision goes from just past my canine tooth on the right upper jaw, just above my teeth on the cheek and tongue sides all the way to the back of my jaw around the back behind where my wisdom tooth used to be. So I guess it's more like 4" long. The bone inbetween was removed, especially back where my wisdom tooth had been. There was a large knobby area of infected bone back there that extended into my hard palate. That is now gone (yay). The bad bone was sent for culturing/biopsy. This area was filled in with INFUSE which is a bone graft material which is placed on an absorbent collagen sponge. As the sponge is absorbed new bone grows in it's place. Usually titanium is used with active infection (I have the brochure on the product), I'm not sure why this was used but have to have faith that my doc knows what he is doing, that he removed everything infected and my future 3 months of a PICC line and daily IV antibiotics will prevent or eliminate the remaining infection...for good. However, the issues with the right lower jaw were not addressed at all..Will have to see if I can get in with a dentist very soon..since I fired mine I'm not sure where I'm going...would be nice if I could see one in San Diego before my follow-up appt.

Pre-op today. Had new panoramic x-ray taken today. The infected bone in the right maxilla was more obvious today and the doctor pointed it out to me. Unable to see anything in the mandible yet though. Surgery will be tomorrow in Sharp Memorial Hospital in San Diego at 6:30 pm PST. Have to be at the hospital at 3:30 pm PST. Will be in the hospital for 3-4 days. Will try to keep up to date on here.

Scheduled surgical debridement and biopsy for Wed, Feb 24, 2011. Crazy day today..I stopped at my storage unit to grab my suitcase. The code to the building wouldn't work..apparently the code has been changed. Then 50% of my patient's were incredibly intense. And then Dr. Berger's office calls today and told me they were having trouble scheduling the surgery, because I was already scheduled for a procedure at 7:30 am that Wed and you can't have two surgeries in one day. I suppose someone may have tried it before, but at least give me the benefit of the doubt...So then they said, what else are you having done and I said "nothing I'm aware of, but there are several Danielle's in the country". So the anesthesiology people call me a few hours later from the hospital with the same question. Which Danielle are you? Well I had a tonsillectomy in first grade, so I'll pass on a re-do thanks. So then she says "okay I guess I'll delete that one" and I was like "no NO you can't delete someone elses surgery". So I was inadvertently given enough info to be able to call the other Danielle's doctor's office. Fortunately despite having a very common name he was easy to locate. His office was grateful and called the hospital. And currently things appear to be corrected in the computer....whew... so now to get packed and paper work done... I think it's almost a full moon..really that is the only thing that could explain today.

Still waiting for call back from Dr. Berger's office. Called and left a message with 2 different people and then emailed another..sounds like OCD, but seriously ready to get this taken care of...

Sun, Feb 13: Feeling kind of like a chipmunk with an acorn in just the right cheek, but otherwise not too bad. Got a lot of work done today. Will see the ID doc tomorrow, expect to get more of idea of post-op care. Expect to hear from Dr. Berger's office and schedule the debridement and biopsy.

Friday, Feb 11, 2011..I went to see my family doctor yesterday just to touch base with him and keep him in the loop. I hadn't seen him in a few weeks. I gave him the contact information for Dr. Brust, the infectious disease doctor and he called him. They pow-wowed and my GP texted me today. He gave me the go ahead to go to San Diego for the surgical debridement and biopsy that I need. I called Dr. Berger's office in San Diego and left a message, waiting for a return call to schedule the surgery. Will see the ID doc on Mon and discuss this treatment plan and the post op care. Until then I am to stay off the antibiotics so that an accurate biopsy can be completed during the debridement. Actually not doing as bad as I expected I would be at this point almost 2 weeks off of the antibiotics. They must have helped more than I thought. However, some symptoms have returned. My face is quite swollen, submandibular gland is swollen, especially on the right. I have dizzy episodes and almost fall over backwards. My jaw is very sore on the right (upper and lower), the roof of my mouth hurts, ear, cheek bone and side of head hurts moderately, I'm a little tired, I have 2 abscesses that are draining bitter, nasty stuff in my mouth and my memory is terrible..but I have felt a whole lot worse and expected to be a lot worse than I am. Every day a few more symptoms come back and don't know if it will be a week or 2 before the surgery...will see how it goes..

Wed, Feb 9, 2011 Face swelling and symptoms increasing...will have lab work done in the a.m.

Tues: 2/8/2011 I emailed the ID doc today about my increasing symptoms. Trying to plan my future treatment around my business and snow bird season. Really need another PT in my office at least part-time to cover for me. I have so many marketing events coming up that I want to go to in order to prepare for summer, but then I don't want to go to them because I don't know what I will do with my patient's once someone finally decides to do something to help me. Anyways ID doc says he's going to have to examine me to determine the plan of care and may order more imaging. All imaging has been done while on antibiotics to a degree. I stopped them a few days before the tests, but never for 2 weeks before. Usually 1 week off made me quite ill. (I'm well headed there now). I just keep telling myself that this really is what I have to do in order to have some accurate tests done. I know he is right..it's just hard to have all the infection coming back and undoing the progress I have made by taking the Clindamyacin (which is brutal on the body). Hanging in there for now.....

Monday 2-7-2011 7 days without antibiotics. Still taking meds for reflux, but my stomach feels so much better, Also since going off the antibiotics, my face has gradually been swelling again. The average person wasn't able to see it, but between 3 and 4 today, the facial swelling on the right side doubled in size. The whole right side of my head feels swollen. The left side of my face looks swollen too, but doesn't feel nearly as bad as the right. Have another week before I see the ID doctor. Not sure that I will or can wait that long.. May try to see him tomorrow or see my general practitioner and ask for his opinion..I should look like a white oompa loompa by then...I feel like I am morphing!!

Friday 2/4/2011

5 days without antibiotics:  My mouth IS really bothering me.  The infected area tastes weird.  I'm nauseous from the taste.  My throat is really sore and tight on the right and I feel like there's a lump in it.  It's hard to swallow.  My mouth hurts and the lumpy spot in the back is really disturbing me. I'm having the urge to get a potato peeler and gauge out the bad bone (don't worry I won't, but sometimes I think I could core it out like a potato root thing.) Apparently I can't think straight either.  My gums and face are swollen on the right significantly, but yet few people can tell because the swelling is deep in my head.  My ear is starting to hurt again and I've been saying "what", "what"..all day.  I emailed Dr. Brust, the ID doctor to give him and up date and his response still was "well lets see how it is after 2 weeks".  Compazine (for nausea)..would be nice..thank you very much..I doubt I will make it two weeks.. I will probably walk in his office next Tuesday and see if they still want me to wait an entire second week. I'll see..

The throat thing started Tuesday and got worse yesterday.  Today, I tried to eat a banana and it didn't want to go down. 

I remembered that I could take Ibuprofen for the next week. I took some, things got a lot better.  The lump in my throat decreased enough that I was able to swallow and the jaw pain was tolerable enough to work.

I am trying to be positive hoping that the infection will go away.  I have been on antibiotics since the beginning of October and it's February.  May be it will continue to kill off the infection and it will all go away spontaneously like Dr. Brust said it would! However, right now I am on a break from the antibiotics (of course now I know that all those toxic antibiotics weren't getting rid of the infection because the infection was parasitic based, not bacterial). 

Wednesday:

Today's excitement included going to see the infectious disease doctor.  He asked how yesterday at Dr. Marx office went and I informed him that it was a diagnosis based on the good ole boys club.  He said he was surprised that  I had picked up on it and that it was rampant in the medical/dental field.

He also instructed me to go off the antibiotics for 2 weeks and then have blood work.  Then we will go from there.  He also informed me that he was going to call Dr. Marx.  I'd have loved to have been a bug on the wall during that call.  He also advised against calling Dr. Berger in San Diego. (This was the beginning of Dr. Brust's decline in care).

A follow up appointment was scheduled for Feb 14, 2011.

So I left his office and called San Diego.  It can take up to two weeks to get an insurance authorization for the surgery and I wanted to make sure that Dr. Berger is his own person. His office told me that I have nothing to worry about as Dr. Berger is his own person. He will look at the reports that come in, but stand by his own opinion.  That was a great relief and I hope that holds.  I've been told stuff like this before and then surprise..the person fails you.  So I hope that's not the case.  The insurance authorization process has been initiated.  It is refreshing to talk to kind people that appear to care..hope it stays that way!!

Saturday....I'm not normally this belligerent..well yes I am, but I have been off the antibiotics for 3 days and already my face is much more swollen.  In 4 more days, I am going to be really sick and my face really swollen.  By Feb 14th I'm going to be very ill, but still have to work.

I will NOT go back to the University of Miami to Dr. Marx.  That facility was filthy and  Dr. Marx doesn't like me too well.  Why would I let him near me with a knife??  That would be really stupid.  I would think he would have better ethics being a man of his supposed caliper, but he already proved to me that he has none!!

So for now I am going to take a picture every morning and night and document how I feel every day.  I will give that to the ID doctor at my next appt Feb 14, 2011. 

So I saw Dr Marx today in Miami at Jackson Medical Center. It's been a while since I have seen the "good ole boys club" at work. A resident took my history. Nice good looking young guy. I could here him half ass give it to the doctor in a different room. The doctor looked at my radiology reports and films. Then came in the room with several interns, residents etc. I felt like a lab rat in an open topped cage surrounded by vultures. Dr. Marx looked in my mouth and felt around. Asked a few questions, then sat down with my history that I had written out since it is so complex. I watched him start to read the history, while we continued to talk about it. He got to the second page where Dr Sachs said I had fibromyalgia or neuralgia in my face. He stopped reading. He fixated. It occurred to me that all the oral surgeons in south Florida might know each other. And then Dr. Marx said "I had a diagnosis in my mind before I even came in here- neuralgia". So I asked him "So why does my face swell and all my symptoms increase when I stop antibiotics?" He said "Why do you stop the antibiotics?" and never answered my question. I said so that I can see doctors and actually have symptoms that they will notice. And I told him that a neurologist ruled out neuralgia on Friday and he really had nothing to say. There were a few more words. He said what do you suggest..like I was one of the interns and I said "exploratory surgery". I saw a resident agree and then the doctor said "I wouldn't recommend it" and then he walked out. His staff was completely dumbfounded. They didn't know why he was acting weird either. One of his regular staff apologized for his behavior and I called him an arrogant bastard etc, plenty loud enough that I am sure he heard. So I came home angry by his complete arrogance and incompetence. I looked up SWFL Oral and Facial Surgery Center in Fort Myers, website. Side note DON"T EVER go there, horrible oral surgeons IMO! (See history for more info). Dr Sachs did his residency at Jackson Hospital in Miami (42 years ago). Dr. Marx is up there in age too. Also there is a south Florida Oral Maxillofasial surgeon society or something like that..so ...you tell me it wasn't a good ole boys issue. It was definitely a biased evaluation that did not include all the facts and left the interns in the room with there jaws hanging open. I've gotten really good at firing back at arrogant doctors. Ultimately it doesn't accomplish much. Hopefully I've at least irritated them as much as they annoy me. I am a physical therapist and I don't care if my best friend physical therapist says you have sciatica and I think you have a hamstring problem. I'm going to do my own assessment and if I think it's the hamstrings still, I'm going to treat the hamstrings. It's still my reputation and responsibility! So I continue to explore the internet..it took about a whole may be 3 min online and I find that Dr. Marx is the organizer of a symposium in April 2011. His first guest speaker. Dr. Joel Berger. The doctor I want to go to in San Diego. So is the good ole boys club going to stop me from getting the care I need in San Diego? If he changes his position I am going to have to find legal help. Not sure how that's going to fix my mouth. I may have to resort to digging the dang bone out with the end of a potato peeler.....So I called San Diego today, the office was closed. Will try again tomorrow. See ID doctor tomorrow too. Will be refreshing to see someone that believes me and doesn't belong to the club...(little did I know at that time was Dr. Brust, the ID doctor was just as bad or worse than the others). (These doctors are what is wrong with healthcare in America today, pure incompetence in my 1st amendment right opinion!!!!)

4 am..woke up with headache..but heartburn has let up some..it's probably all stress over today's impending appointment...