It's been quite awhile since I posted, thank you all for your comments and concerns. I guess I was just trying to live and not fixate on the symptoms. It's reached a point now that I can't ignore them anymore.
Like all chronic illnesses, I have good days(months) and bad ones. Right now, the bad are overriding that good.
From July 2012-Oct 2012, I was doing pretty good. Had good energy. Was still fighting the lump in the right posterior maxilla and it's nearly perpetual drainage, but doing well. Somewhere around Oct 2012, the area of the left posterior maxilla, suddenly got worse and a lump developed. I went back to Dr. Berger and had surgery on it in Jan 2013. I wanted it removed, before it got as bad as the right is. I really thought he got the entire lump. My energy was great for a few weeks, but, since then it's been an overall gradual decline, with a few good days to fool me in between.
The last 2 months, I have been worse than I been in a long time, like since Dec 2010. Several nights, I have gone to sleep wondering if I'm going to wake up the next morning. Despite this I wake up in the morning, force myself out of bed (my bladder generally gets me up..lol..), go to work and have to pretend that I am fine. I spent 3 weeks really dizzy, then moved onto the acidic drainage from the right maxilla making me nauseous and belching to stabbing gallbladder pain. Which thanks to this I had to have my gallbladder removed, so it shouldn't really be hurting. Then in the last two weeks, throbbing pain in my left lower jaw that moved into a knife in my left ear and a sinus infection. It was very weird.
And now to make a long story short, I just feel like crap and have no energy. The lump on the right maxilla is draining, the lump on the left that was removed in Jan this year, has grown back. The left lower jaw has suddenly become worse causing me to not be able to hear much out of my left ear and I have an occasional knife in my left temple.
Yesterday I went to a biological dentist in Anacortes, WA and had Electrodermal testing done. It was interesting and confirmed all of my problems. (I wanted to say "I told you so", but I behaved). It was recommended that I have surgery on all 4 areas, while they complete the Electrodermal testing to make sure that they get all of the dead or infected tissue out. It sounds like a possible end to all of this. If I didn't feel so crappy and weary, I would be overjoyed. They also referred me to a holistic nutritionist to help with the gallbladder and sluggish liver issues that I'm having due to the perpetual battle with all the toxins in my body and to help rebuild my immune system prior to more surgery.
So this morning I dug out some leftover antibiotics and put myself back on them so that I would make it through the work day, find some enthusiasm and have the energy to continue the fight. I feel a little better already. I know a holistic doctor probably would not recommend the antibiotics, but I need something to prevent me from keeling over before I hopefully finally get real help. The antibiotics aren't going to stop the disease, they haven't so far, but they do generally help give me a boost through the worst times and to be blunt, prevent me from dying or feeling like I'm on the brink.
If you were to run across me, you'd probably just think I'm a little fat (50# weight gain thanks to all this), very white (pasty,pale), but healthy middle age female. If you were to happen to say "how are you today?"...... "I'm fine"...I'm a good faker.
Thank you for reading..I wish you the best and hope that you find good, effective treatment for the problems that you are experiencing...
Like all chronic illnesses, I have good days(months) and bad ones. Right now, the bad are overriding that good.
From July 2012-Oct 2012, I was doing pretty good. Had good energy. Was still fighting the lump in the right posterior maxilla and it's nearly perpetual drainage, but doing well. Somewhere around Oct 2012, the area of the left posterior maxilla, suddenly got worse and a lump developed. I went back to Dr. Berger and had surgery on it in Jan 2013. I wanted it removed, before it got as bad as the right is. I really thought he got the entire lump. My energy was great for a few weeks, but, since then it's been an overall gradual decline, with a few good days to fool me in between.
The last 2 months, I have been worse than I been in a long time, like since Dec 2010. Several nights, I have gone to sleep wondering if I'm going to wake up the next morning. Despite this I wake up in the morning, force myself out of bed (my bladder generally gets me up..lol..), go to work and have to pretend that I am fine. I spent 3 weeks really dizzy, then moved onto the acidic drainage from the right maxilla making me nauseous and belching to stabbing gallbladder pain. Which thanks to this I had to have my gallbladder removed, so it shouldn't really be hurting. Then in the last two weeks, throbbing pain in my left lower jaw that moved into a knife in my left ear and a sinus infection. It was very weird.
And now to make a long story short, I just feel like crap and have no energy. The lump on the right maxilla is draining, the lump on the left that was removed in Jan this year, has grown back. The left lower jaw has suddenly become worse causing me to not be able to hear much out of my left ear and I have an occasional knife in my left temple.
Yesterday I went to a biological dentist in Anacortes, WA and had Electrodermal testing done. It was interesting and confirmed all of my problems. (I wanted to say "I told you so", but I behaved). It was recommended that I have surgery on all 4 areas, while they complete the Electrodermal testing to make sure that they get all of the dead or infected tissue out. It sounds like a possible end to all of this. If I didn't feel so crappy and weary, I would be overjoyed. They also referred me to a holistic nutritionist to help with the gallbladder and sluggish liver issues that I'm having due to the perpetual battle with all the toxins in my body and to help rebuild my immune system prior to more surgery.
So this morning I dug out some leftover antibiotics and put myself back on them so that I would make it through the work day, find some enthusiasm and have the energy to continue the fight. I feel a little better already. I know a holistic doctor probably would not recommend the antibiotics, but I need something to prevent me from keeling over before I hopefully finally get real help. The antibiotics aren't going to stop the disease, they haven't so far, but they do generally help give me a boost through the worst times and to be blunt, prevent me from dying or feeling like I'm on the brink.
If you were to run across me, you'd probably just think I'm a little fat (50# weight gain thanks to all this), very white (pasty,pale), but healthy middle age female. If you were to happen to say "how are you today?"...... "I'm fine"...I'm a good faker.
Thank you for reading..I wish you the best and hope that you find good, effective treatment for the problems that you are experiencing...
Hi Danielle,
ReplyDeleteFirst, my sympathies for what you are going through. I recently had dental work done to remove a tooth and have been going through hell for almost two months now. Whatever they did at the dentist office set off a chain reaction that resulted in my right side of my face swelling to balloon size and excruciating pain that made me want to off myself. I finally after two days of being in the ER at two different hospitals was seen by an Oral Surgeon at the Univ. of Cincinnati and was told that I had Osteo Myelitis with necrosis. I underwent surgery a week and a half ago and was told that they believe they got all of the necrosis out but the pain is still there and I'm pretty much living off of Percocet and advil and have been on antibiotics for over a month. I'm truly hopeful that with time this will all be a bad dream but until then I'm trying to educate myself as much as possible on this condition. My OM was not seen on any catscan, mri, etc so exploratory surgery had to be done to diagnose it. Please keep writing on your journey as I'm praying to God this is a short one for me and perhaps we can help each other in the process. BTW, I am 46 years old, WAS very active and worked full time forever and have 3 sons. I am now unemployed, no energy at all, can only stand or walk for maybe an hour before I'm totally drained and just feel like my life has been sucked out of me.
I am sorry that you are suffering and hope that you find competent help soon.
ReplyDeleteI do understand how you feel and wish there was someway to help. Mainstream medical is very inadequate. You know that there are abnormalities on the scans. There has to be, the radiologists just don't know how to see them. At least in my case, 4 surgeries with 4 biopsy reports confirming chronic OM of the jaw bone. So there are abnormalities on a microscopic level, either the MRIs (or other radiological tests) are not sensitive enough or the radiologists are not competent (or both).
My suggestions:
-Keep fighting.
-Try liquid vitamin C (brand Buried Treasure - can get on Amazon)working up to 2000 ml/mg/day. Vitamin C is toxic to even cancer cells at high doses, may kill bacteria too.
-Take lots of acidophilis and "AZO yeast" (Walmart)to prevent yeast infections and restore good bacteria to the gut.
-If not allergic to iodine, try rinsing your mouth with water and 2-3 drops of iodine you get from the health food store.
-Or find "The Natural Dentist" mouthwash. The main ingredient is aloe juice. Taste nasty, but helps with healing if you can tolerate Aloe. You could probably just rinse with aloe. I haven't tried it yet.
-Someone suggested on here phenomenal water. I'm going to try it, before undergoing 4 more surgeries for the OM in bilateral upper and lower posterior jaw areas, which is what has recently been suggested.
None of the above stopped the progression of my problems, but I believe it slowed the progression until I have now found a doctor that can help. It's taken 3 years (really 5), but 3 years of horrible symptoms,3 years of intermittent antibiotic treatment and over 90 doctors, radiologists, dentists, oral surgeons, neurologists, ENTs, infectious disease, holistic doctors, biological dentists, 3 ER visits and over $50,000 in out of pocket expenses (over $250,000 billed to medical insurance) and the sad part..I'm still sick.
I really hope that in 3 years this illness is just a memory for you.
Danielle
I relate to you, Danielle, I've had several cracked teeth, root canals, extractions, etc and now am dealing with yet another one and I have intermittent jaw pain, which becomes unbearable at times and non-existent at others...I'm scheduled for another root canal on the tooth in question, but I dread it because I'm fairly sure it will end up revealing another cracked and unsalvagable tooth, and even worse, I fear that I let it sit there too long and might actually have mandibular OM. There's a painful and palpable lump the size of a larger jellybean up under my jaw, but I'm the only one who seems able to palpate it. I completely and totally related to your statement about appearing fine on the outside and pretending to be ok. I struggle at work, also. But, I guess there's not much choice but to endure it. Such incompetence and ignorance in this particular area of dentistry. I've become too embarassed to even call for appointments at times, as I'm just sick to death of it all...of being a "problem patient".
ReplyDeleteYou do relate to me..and that so not a good thing! I am a medical professional and say that YOU are not a problem patient!! There are a lot of doctors that shouldn't have licenses.
ReplyDeleteI can't recommend my current biological dentist yet to a point that it is justifiable going to extremes to see him, although to this point he appears to be the most competent that I have seen.
I know he actually does a procedure to remove root canals. If the lump you feel is under the tooth in question, I don't know if spending the money on a root canal is going to be worth it. (Of course you already know that).
I just had a crown done on one of my last two molars, because it was cracked. I think I wasted my $1400.00 as it hurts with chewing; however, I value every painful chew as liquid steak still does not sound appealing...
Hang in there and please let me know what happens.
Danielle
I'm so thankful you wrote this blog! I'm about to begin this journey; treatment is still in the discussion stage.
ReplyDeleteI live in a small town in the middle of nowhere and work for a Critical Access Hospital. I'm also a metastatic cancer patient on Xgeva with neutropenia.Currently on oral Clindamycin. Not really a surgical candidate due to high risk of ONJ (but that might be a moot point now.) Aren't I a ball of fun? LOL
Even though I am absolutely not intimidated by doctors, I wasn't really being taken seriously about my mouth. Because of my moderate/severe neutropenia there wasn't any swelling. Assumption was tooth abscesses so I had two root canals done by a very competent Endontist. Concurrently my chemo changed and my neutropenia has subsided to minor - pending on normal! - and then the pain and swelling started! Gotta be able to make pus to have swelling. Yay me for making pus. My theory is this has been simmering for quite some time, just had to wait for the conditions to be right for it to flare up enough for detection.
I sure hope you have found a doctor that will get yours under control. I'm somewhat daunted by the fact you are still having so much trouble after all this time, and you are healthy! Prognosis looks grim for me.
Hi Danielle, wanted to give an update. After my third surgery which took 2 1/2 hours, I am now hopeful that all is on the path to recovery. They found that the majority of my jawbone had necrosis on the right side and had to remove most of it but left the outer core in hopes that bone would regrow. Last week, they had to reopen the site because it had completely closed and the infection is not totally gone which started causing my face to swell again. I am also being treated by an Infectious Disease doctor and my Oral/Maxillofacial Surgeon is standing by me all the way with this. He truly is the best that I have ever found! I can tell with each day that the infection is going away more and more and the swelling is down to a minimal size. I really would like to recommend my doctor if you would like. He works at the University of Cincinnati, which is a teaching hospital and I don't care if I am a "test subject" for their curriculum at this point because they are doing a GREAT job. All six of the Resident Interns show the utmost passion for what is going on with me and are always available to answer questions. For the first time since April 22, I was actually able to go out and work for quite a few hours in my yard and my energy level is increasing daily. I still have a long way to go. With all of this, all of my bottom teeth had to be removed to get to the necrosis so now I wait to see if the bone will grow back or if bone grafts have to be done. They are already talking about implants within 6 months to a year which gives me hope. I pray for everyone going through this. no one knows how painful it really is, and how dangerous to have infections in your face, that close to your brain. God bless you all. Will keep you posted. Brenda
ReplyDeleteGood luck to both of you.
ReplyDelete.