Joint Replacement Fund - To Be Able to open her mouth
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Imagine not being able to open your mouth to eat, brush your teeth or go to the denstist for you basic cleaning. My daughter has been suffereing from Temporomandibular Joint Disorder since she was 14 years old. She started off as everyone else does with conservative treatment for about three years. During that time she was diagnosed with Celiac Disease and was in a bad care accident that made her TMJ worse than it started out to be. Her jaw ended up locking and she started getting severe pain, limited mouth opening, headaches, tinnitus, and slurring of speech.
After the past year and a half of going through procedures/surgeries she is at the point where she is Ankyloses (bone fusion), joint degeneration, and her condyles are eroding. The Ankylosis is limiting her mouth opening to 10MM and the splint that she got from her other surgery she is unable to wear at all at this point. The only option that she has left is Total Joint Replacement. Listed below is everything that she has been going through.
~~Arhtrocentesis~~ December 2013
This was the first procedure my daughter went through. She was given local anesthesia at the surgeon’s office. This procedure is where they put needles into her jaw joint and saline is pumped into the joint and the other needle allowed the saline to drain. She had steroids put into her jaw to reduce the inflammation. This procedure continued to increase her pain and make her worse because her discs were so displaced that they would not return to the normal position.
~~Arthroplasty~~ February 28, 2014
Since the Arthrocentesis failed and probably resulted in more issues the surgeon than scheduled her for an Arthroplasty (8 hour surgery with hospital stay). During this surgery the surgeon said that her left side condyle (which is where the disc should sit) was deformed; flat instead of curved. He reshaped that condyle and shaved her disc. He sutured both discs into the condyles and put mitek anchors in her jaw on both sides to hold the discs in. She received a Thera-byte (thankful for the person who helped purchase this) which is a device to exercise her jaw and try to get her mobility back. She was sent home the next day to go on and experience a hematoma in her left side that burst resulting in her incision opening. Once she healed from this surgery she knew that the procedure did not fix the issue and her pain continued to get worse from there.
~~Total Joint Replacement~~ August 8, 2014
After a few months of realizing this surgery did not correct her issue she was than scheduled for a TJR. We were both scared and hopeful at the same time. During the three + months waiting for the surgery date she continued to take pain medication to try to get through her days because it hurt her to do anything, eating, smiling, talking and sometimes just waking up. She was unable to sleep and woke up at all hours of the night. Less than 24 hours before this surgery was to take place her surgeon called and canceled stating that she was fine and everything was where it should be even through her MRI showed her discs were still displaced and had inflammation. He said the only finding that he and his colleagues could find was pain. Three weeks later the surgeon moved out of state and the office that she he was associated with refused to help her with her issues when we tried to go multiple times to visit them. ~~Moving Forward~~ We continued our journey looking for another surgeon and found a surgeon that has been doing Oral Maxi facial surgery and is known in his field
~~December 2014 Arthroplasy (Disc Removal)~~
The new surgeon knew something was wrong immediately when he saw her. When he took images of her jaw and joints he saw that she was in a locked position still and her joints were degenerating. This was causing multiple issues with her from not opening her mouth, slurring speech, headaches and extreme pain in her jaw all the time. She could hardly eat as well. The surgeon recommended removing her discs to try to give her the opportunity to get mobility back in her jaw, alleviate the pain, and try to stop the joint degeneration from continuing so she would have more years without getting a joint replacement due to the fact that she is so young. She had the surgery a few days before Christmas and was in the hospital for two days. After the surgery she had to wear a bite grip constantly in her mouth for six weeks straight. This was made before the surgery and was extremely painful to get done. She had to go to aggressive physical therapy and was unable to eat anything but liquids. For a while she was doing good and got her jaw opening up to 30MM. Once the six weeks were up she was allowed to have the bite grip out during the day and just wear at night. She was able to start eating soft foods finally. After a while her mouth opening starting decreasing again and is now at the point where it is only 10MM, and she has Ankyloses (bone fusion).
~~Required Sugery - Total Joint Replacement~~
The surgeon is going to be replacing her joints with custom made joints. We did a 3D Anatomical Modeling CT-Scan to get this started. The surgery itself with be anywhere from 8 hours to 12 hours with two surgeons working on her. They will be moving her jaw forward a few inches as well by securing it during surgery with screws in her mouth to hold it in place. There is nothing else that can be done at this point because of the Ankyloses mostly. Once the bones are fused together it is really difficult to release them and the surgery to do this the Total Joint Replacement. After the surgery there is going to be some time that she will have to get used to the implants in her jaw but the end result will be that she can open her mouth. Every day she is getting severe headaches, dizziness and she is unable to even put her splint in her mouth anymore because it will not fit. The only way she can brush her teeth is with a kids toothbrush. At this point in my daughter’s life the only way that she is going to be able to function is to get this surgery done that she needs. From all the past medical bills, physical therapy and other expenses related to this issues we owe a lot of money. We have tried other avenues to get some help for her but we always seem to come up against a stone wall. This past year and a half has been an emotional and financial strain for her as well as me. This surgery is not ususally covered by any type of insurance but the surgeon is trying to work with me as best as he can but still is requiring the 20% of the cost that my insurance will not cover.
She was scheduled for the total joint on January 5th of next year. During my research on the joints that were being custom made for her I came across a warning letter issued to the compay by the FDA. I reached out to the FDA, contacted the company and emailed the information to my surgeon. The surgeon than contacted my daughter and told her that everything was alright and that it was only for the partial joint replacment not the total joint. Come today I get a phone call from the surgeon saying that he and the other surgeon will not be performing the sugery because of what was brought up about the FDA. I contacted that company and spoke to the CEO and was informed that in hindsight he failed to metion that he had to get special permission from the FDA to sell the joints to the surgeon and that the reason they were getting a warning letter is because they needed to submit studies.
We now have to go in search of another surgeon to do this surgery which will most likely be out of state because of the type of surgery it is. I do not know what else to do but ask for some help at this point.
We have found another surgeon but in Milwaukee. It has been a hard road for her. He is going to do the surgery for her but we have to wait six to twelve weeks for the joints to be made and everyday she is getting worse. She has been scheduled to go to a Pain Management doctor because she can no longer take the pain in her jaw and the headaches she always gets. This has impacted her life where she had to drop out of school because she could not concentrate on anything.
Thank you for reading this and I hope that you have a better understanding of what this is and thank you for your support.