Still plugging along. Continue to have a small lump in the right posterior maxilla. It is slowly getting smaller and I can't wait for the day when I can post that it is gone.
My left maxilla and mandible are doing weird things. About a month ago the lump that I have in the left posterior maxilla got bigger, then real hard and painful. It drained some and after several days calmed back down. Now for the last two weeks I have developed cysts way in the back of my mouth on the left. They are like bubbles of fluid about the size of a pencil eraser. When I go to break them open, they turn to blood blisters and then pop. In a few days, it clears up and goes away. The lump seems to be a little smaller.
At this time I have returned to Washington state to help out with the last facility I worked at.
Since I am here (in Washington) I have scheduled an appointment with Larry Ward at Comprehensive Medical in Kirkland, WA for further evaluation using the electrodermal system. He is so busy that I can't get in until Oct 20, 2014. He is worth the wait though. Only problem is I plan to leave from there and head back to Florida. So if I need anything surgical done, it will have to wait until next spring. I love Washington during all seasons except winter!
My left maxilla and mandible are doing weird things. About a month ago the lump that I have in the left posterior maxilla got bigger, then real hard and painful. It drained some and after several days calmed back down. Now for the last two weeks I have developed cysts way in the back of my mouth on the left. They are like bubbles of fluid about the size of a pencil eraser. When I go to break them open, they turn to blood blisters and then pop. In a few days, it clears up and goes away. The lump seems to be a little smaller.
At this time I have returned to Washington state to help out with the last facility I worked at.
Since I am here (in Washington) I have scheduled an appointment with Larry Ward at Comprehensive Medical in Kirkland, WA for further evaluation using the electrodermal system. He is so busy that I can't get in until Oct 20, 2014. He is worth the wait though. Only problem is I plan to leave from there and head back to Florida. So if I need anything surgical done, it will have to wait until next spring. I love Washington during all seasons except winter!
Dear Danial,
ReplyDeleteI came across your posts from a website for chronicle osteomyilitis patients and happened to find your blog when I Googled for it. I just spent a whole morning reading all your blogs. I am amazed by how strong you are and thank you so much for writing and posting your stories.
My story has a lot of similarities with yours. I had wisdom teeth extraction September 2013 and was diagnosed with Osteomyilitis in July through a biopsy. The oral surgeon who did the extraction tried to deny the problem until I showed him MRI result which says a "cyst was identified" in the area. He did the biopsy but I don't think he did any thorough debriedment. I have been on antibiotics for almost two months now. It seems to relieve me from my symptoms a little, but whenever I tried to get off it, the symptoms came back.
As I live in San Diego and saw your comments about Dr. Joel Burger, I am especially interested in knowing your experience with him. I am seeing him now and he made the diagnosis that my problem is still osteomylitis (he said basically the other oral surgeon did not do anything helpful to remove the infection). He recommended a bone scan/labeled WBC scan to confirm the diagnosis. Then he is going to do an "aggressive debriedment" followed by prolonged antibiotics.
Now I am not sure if I should follow his recommendation. He does seem to be experienced in the field and all my physicians referred him as the "go to" person for osteomylitis. He mentioned that he "is the only person" in the area that is treating the disease. On the other hand, I am so worried that the surgery will make things worse. He admitted himself that the disease is "very difficult to treat" and all the dental procedures I had before seem to push me into the awful place I am in right now. I used to have perfectly healthy body and teeth. I only went to my doctor once a year for yearly check up. Now a wisdom tooth extraction changed all this.
I am lucky that my family is very supportive both financially and emotionally. I have family back in another country where I was originally from. The health care system is different from here and I don't have to run from doctor to doctor for surgeries and antibiotics. However, since the treatment may take a long time, I don't feel comfortable leaving my husband and kid in the U.S. while I am in another country trying to get treatment.
I am hoping your experience with Dr. Burger can help me make a better decision. I am also having bad depression now. So I can relate your experience with Cymbolta. My doctor prescribed it but I am hesitant about taking it. I am also struggling to keep my job and also struggling to be a good mom as I used to be. I am losing sleep over this too, which has rarely happened before I had this nasty disease.
I am so glad I found your website. Hope we can talk more and hope you feel better.
Xiann,
DeleteHow are you doing? What decision did you make? I will look for your response.
Danielle
My 12 year old daughter has chronic sclerosing osteomyelitis in her right jaw. It started 2 years ago when she started having pain and swelling in her jaw. It took months before we got a diagnosis. She underwent 2 biopsies, 2 debridement surgeries, IV antibiotics, and even hyperbaric treatment. The infection kept coming back, though. Fortunately, we were referred to Dr. Robert Marx in Miami, FL. He is an expert on this condition so we went to Miami in may to see him. He made us feel at ease about everything, and we ended up scheduling surgery last August to have part of my daughter's jaw removed. Dr. Marx told us that this is ally the only cure for this infection. Since the surgery, my daughter has been completely out of pain. It is such a relief that she no longer has any pain. She has a titanium plate in right now, but she will be going back in June to have it removed. At that time, they will do a bone graft. I highly recommend that anyone with this condition go see Dr. Marx. People from all over the country go to see it. He even wrote a book about the condition. Had I know about Dr. Marx earlier, I would have seen him sooner. My daughter spent so much time in excruciating pain, and I wish I could have saved her from that. We live in Illinois so having to go out to Miami is not convenient for us. However, I am so grateful that we saw him and had my daughter's jaw removed. I was apprehensive about it but having her out of pain has made it all worth it. I'm looking forward to the bone graft being done so we can put all of this behind us.
ReplyDeleteShelly,
DeleteThank you for your comment. I am glad that you had a good experience with Dr. Marx, as I did not. He was an arrogant bastard that did not listen to my complaints because he is part of the good ole boys club with the doctors that I has seen before him. I HIGHLY recommend that NO ONE see Dr. Marx. If you are going to fly a crossed the country to see any one it should be Dr. Russ Borneman in Anacortes, WA http://www.healthgrades.com/dentist/dr-russ-borneman-x34gn I highly doubt if he had seen her that there would be a plate in her jaw and the harmful IV antibiotics would probably have been replaced by less harmful holistic remedies. IV antibiotics did not work for me, but that is because it is/was parasite based, something mainstream doctors will never address. I feel that despite everything, I was blessed by being led to Dr. Borneman. I figure if Dr. Marx or the Mayo Clinic (whom refused to see me 9 surgeries ago as they said there was nothing surgical) had treated me, my face would probably be disfigured and mangled with metal left somewhere in me and on a feeding tube for life. So to sum it up DO NOT SEE DR. MARX!!!
SO sorry about all of this. I'm just starting down this road and on my 4th week of Clindamycin after getting a root taken out that was accidentally left over from an extraction 3 months ago. Ongoing tenderness swelling and pain in my cheek. I can't believe all you've gone through. Write an update on how you're doing when you have the energy.
ReplyDeleteI am so sorry that you are heading down this road, as I am now at some ridiculous number of years now 6-7, whose counting at this point.
ReplyDeleteI did fairly well over the last several months, but the left side is gradually getting worse, to a point that it is quite significant. Most days I can't hear out of my left ear and feel like there's a knife in it. I know it's coming from my jaw. I'm back in Florida now and don't have the funds to fly to WA and don't have the energy to deal with incompetent doctors telling me that it's my sinuses when I can put my finger right on the problem in my jaw and feel it radiating up into my ear. So mostly when no one is looking (and sometimes when they are), I cry, because I just don't know what to do.
I'm broke, deeply in debt, lost, fat and having trouble getting a job because apparently physical therapists are supposed to look like Hooter's girls. Who knew??? LOL. I would like to say, if they knew what all I had gone through that they could over see the fatness, but then I think they just see their medical insurance rates increasing and fear that I will miss a lot of work. Both of which are funny, since I generally see holistic doctors that don't bill insurance and even when I feel my crapiest, I suck it up, consume caffeine and go to work. Last year I didn't miss a single day of work due to any illness and I generally don't. I only call off for the flu which I get every 3 or 4 years. So overall the job search in Florida here has been less than fun.
I do need to write a post on the holistic remedies that have helped so much. Antibiotics will only help if it is truly a bacterial infection. If it's not, the antibiotics may appear to help and then the symptoms return after stopping them. Then it is probably parasitic in nature. And my parasites were never found during typical mainstream doctors bone biopsies. I will try to write an update soon.
Again, I am so sorry. I wish you better luck than I have had (although for me meeting Larry Ward and Dr. Borneman was pretty lucky even if it did take 4 years, better late than never.. and I still am above ground -although I don't know at this point if the latter is a good thing anymore cause I have had enough).
I'm so happy to find this blog!! Thank you. I also have osteo of the jaw 2yrs. I'm having trouble posting however, so this is a test run...
ReplyDeleteIt worked!!
ReplyDeleteOh gosh I'm so sorry to hear you're still struggling. Did you ever end up seeing any good oral surgeons? Any good ones in Washington? I'm really striking out locally.
ReplyDeleteDid you end up going to Mayo? How was your treatment there? Wondering who you saw.....so were your bone cultures always negative do you know? So many questions ha ha, sorry. Hate that you're dealing with this. I'm trying to navigate through. Haven't had a bone culture or tried IV antibiotics yet. Wondering if I need to go that route or if I should be heading to Anacortes sooner.....If you have an email to connect would be awesome, but don't want to bombard you with all of my questions. :))
ReplyDeleteThere are different remedies of this Osteomyelitis Treatment among which the most reliable is Mycical. It is made of totally natural herbs which are considered as the reducing agents for the bacteria of Osteomyelitis. It reduces the constant pain in the bones, stiffness, discomfort and the cramps in the joints. It also helps to reduce the redness and swelling of the joints by controlling the temperature of the body.
ReplyDeleteThank you Georg Clerk, I will look into it; however, my infection was/is parasitic based not bacterial.
ReplyDeleteAnaphylaxing:
I did NOT go to Mayo. I sent my records to them, they circled facial pain in several places on my records and told me that they saw nothing surgical, pissed me off and blew me off. Since then I have had 8 debridements done. So much for nothing surgical.
So I hope that you don't go that route as they are obviously incompetent!
I am thankful that I found out before I got there and they potentially butchered and deformed my face and further ruined my intestines with needless antibiotics.
You can be evaluated and treated effectively by Dr. Borneman, probably for what your co-pay would be to go to Mayo and most likely get better results with Dr. Borneman in Anacortes.
You can email me at dmhall12345@gmail.com. Best wishes and good luck!