Yesterday I had surgery #5 to remove necrotic bone in the left upper jaw and left lower. The lump I had in the left maxilla came back since the last surgery in Jan 2013.
This time the surgery was different. It was completed by a biological dentist while having electrodermal screening done. The electrodermal screening provides biofeedback. It takes the guess work out of finding the margins of the infected and/or necrotic bone, so that the doctor is more likely to remove all of the bad tissue.
Electrodermal testing also indicated that my infection is parasitic in nature, which is why antibiotics did not stop the destruction of the bone or stop the infection.
Most likely the parasites came from sand flies. Having lived in southern Florida for the last 16 years, sand flies are an issue on the beaches.
I; however, rarely went to the beach. I worked a lot and had a pool, no reason to go to the beach. Just this one time I went for a photo shoot. I had completed a 5 day, 300 mile charity bike ride six weeks after having a radical hysterectomy for cervical cancer. It was an honor and privilege to have my photos taken for "free" for the non-profit's magazine as over 1.2 million magazines are printed and distributed. Neither the photographer or I remembered to bring bug spray. We spent nearly 3 hours getting bitten by sand flies. I was covered head to toe with bites.
You have seen one of these photos. It is my favorite photo of myself. I was strong, vibrant, energetic and unstoppable. It is my profile picture. It is the same picture that I look at to remember how I used to be..and it is most likely the reason I have been fighting for my life for nearly 5 years. That "free" picture has cost me over $200,000.00 in medical bills and still counting. Ironic...
So now I am being treated for the parasite as well as really focusing on my diet to improve my immune system.
I will have surgery again to the right maxilla and mandible in Oct. And then I hope to be done with it!
I have only made it this far though by persistence, holistic medicine, IV vitamin infusions, vitamin C, probiotics and other supplements. If I had followed the advice of the mainstream doctors, I would have died 3 years ago.
This time the surgery was different. It was completed by a biological dentist while having electrodermal screening done. The electrodermal screening provides biofeedback. It takes the guess work out of finding the margins of the infected and/or necrotic bone, so that the doctor is more likely to remove all of the bad tissue.
Electrodermal testing also indicated that my infection is parasitic in nature, which is why antibiotics did not stop the destruction of the bone or stop the infection.
Most likely the parasites came from sand flies. Having lived in southern Florida for the last 16 years, sand flies are an issue on the beaches.
I; however, rarely went to the beach. I worked a lot and had a pool, no reason to go to the beach. Just this one time I went for a photo shoot. I had completed a 5 day, 300 mile charity bike ride six weeks after having a radical hysterectomy for cervical cancer. It was an honor and privilege to have my photos taken for "free" for the non-profit's magazine as over 1.2 million magazines are printed and distributed. Neither the photographer or I remembered to bring bug spray. We spent nearly 3 hours getting bitten by sand flies. I was covered head to toe with bites.
You have seen one of these photos. It is my favorite photo of myself. I was strong, vibrant, energetic and unstoppable. It is my profile picture. It is the same picture that I look at to remember how I used to be..and it is most likely the reason I have been fighting for my life for nearly 5 years. That "free" picture has cost me over $200,000.00 in medical bills and still counting. Ironic...
So now I am being treated for the parasite as well as really focusing on my diet to improve my immune system.
I will have surgery again to the right maxilla and mandible in Oct. And then I hope to be done with it!
I have only made it this far though by persistence, holistic medicine, IV vitamin infusions, vitamin C, probiotics and other supplements. If I had followed the advice of the mainstream doctors, I would have died 3 years ago.
Hello Danielle,
ReplyDeleteI am amazed by your posts and the frustrations you have had with your doctors concerning your jaw problems. My problems began back in 2006 when my jaw completely locked. I wanted to go to "The Best" TMJ doctor in Miami, FL, but to do that meant waiting from September 2006 until December 2006 to be seen by him. During that time I was on pain meds that began as Percocet then upgraded to Vicodin. (I just got off pain meds 2 months ago when I was taking a considerable amount of Oxycontin and Oxcodone a day. It was crazy!) Anyway, I finally had surgery in April of 2007 during which the doctor scraped dead tissue away and put the condyle back into place. The doctor said the dead tissue was from Osteoarthritis in the joints. Unfortunately, this surgery was not successful in taking my pain away so, almost exactly a year to the date, later I underwent my second TMJ surgery where a silastic disc was put into place with the hope of that helping the osteoarthritis to stop. The doctor went in two weeks later and removed the silastic because it would not help. The last X-Rays and scans showed that nothing else could be done and eventually I would have to have bi-lateral joint replacement with Titanium Discs. The doctor I suggested I see another doctor in Gainesville, FL who is known as the "Expert" in jaw joint replacement. I almost forgot, in between the two TMJ surgeries the doctor found a cyst in my lower left mandible and I had to have it removed. That was another painful surgery.
In 2008, my family and I moved to Tallahassee for my husband's job and unfortunately, the only doctor covered by my health plan was the doctor in Gainesville, which is 2 hours south of Tallahassee. I went to see this doctor with hopes that something could be done to stop the constant pain. It was so bad I could only eat soft foods and I could only talk for a limited time. As a teacher, that did not work well so I had to resign from my teaching position.
The doctor looked at all my records and films and said that my joints were "a mess and no other surgeries would help except total joint replacement". However, he said because I was young, 41 years old, he suggested I stay on the pain meds and wait as long as possible to have that surgery done because they will not last forever and I may have to have them replaced 2 or 3 times over my lifetime. I basically excepted the fact that I would have a life of jaw pain, but never did I imagine I would be going through what I have been over the last two years.....
I will continue this tomorrow because I need to go to bed. I am sorry you and the others have had to put up with jaw difficulties also. It does feel good to have some others to relate to also!
Until tomorrow,
Mariann DuPont
I so sorry for your all your hardships I have a good friend that is the the same conditions he is under a lot of stress that he is not able to find some one to help and I am afraid
ReplyDeletethat some will take advantage of him under this desperation
how are you now do you have any advice it will be very much appreciated
John
John,
DeleteI'm am sorry for your friends problems. I now can say that I would go to all lengths to see Dr. Borneman in Anacortes, WA. One of the people who commented on my blog recommended him. I am in Washington now working about 20 minutes from his office. He has completed surgery once in conjunction with electrodermal testing. The electrodermal testing is to help with accuracy of removal of the infected bone. It is also what was used to determine that the infection is parasitic based. I have to admit that despite the testing, some of the area was missed and I am still having problems with the bilateral upper and lower posterior jaw areas. I am taking a lot of antiparasitic supplements and have had stabident injections. Everything helps some and I am headed in the right direction. The great thing about Dr. Bornamen and Larry Ward (electrodermal testing guy) is that they listen, they care and they are willing to work with the patient. They have treated me with empathy, caring and genuine concern. It took me at least 80+ healthcare providers to reach this point. Mentally I am ready to return to Florida, as I did not want to spend another rainy winter in western WA; however, I am here for the duration of the treatment on my jaw. I will beat this! I can say that definitively now for the first time in 5 years!
Danielle