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Everything posted by Gemi

  1. I just wanted to add to my previous post that Dr. Stack told me that he will do tests all over at his office any way, even though I did all tests on my own, but what tests gave me when I did them, they made me aware where the problem is.
  2. Dr.Stack had a simpler explanation of the issue. Also he is very old and he’s been working for a long time. As well he is treating people with different tremors. As well I understood when I was in the office, he wants his patients to stay at the place for 4-5 days in order to make a proper adjustment of the mouth piece because this is important. Plus, he is doing a lot of tests and MRI. But he also mentioned that some people would require a surgery any way. As he explained, they usually perform the surgery for the patients from abroad of US because they do not have insurances. The surgery cost $35.000. American Insurance will require a year of wearing of mouth piece before they will pay for the surgery. As doctor Stack mentioned, some patients would require the surgery even after wearing this mouth piece for a year. He also said that not every oral surgeon can do a proper surgery, because this one require 8 stitches and regularly oral surgeon put 2-4 stitches which is not enough. But in majority cases mouth piece will help. He gave me a DVD with the testimony. On that DVD there were women, who could not walk, was shaking all over. Than he showed her on the 3d day after surgery, she was perfectly fine. She just has to follow liquid diet for 8 weeks post surgery. The surgery is inside the mouth as any oral surgery is. As I understood each case is different but in order to get result proper adjustments needed to be made and proper tactic applied, doctor has to be experienced enough and use the MRI comparisons. Dr. Stack mentioned he is performing MRI before putting mouth piece, in a year, etc. I can not advice any one to make or not to make an appointment to the doctor, but what I think, who is really interested has to do the MRI test and to find out through the test if there is any abnormality. As I mentioned in my previous e-mail, Dr. Stack thinks that 80% will have abnormality with TMJ and 20% will have jaws going to far to the neck area, which other test will show, if TMJ is fine. If there is available physical prove of abnormality than it is easier to understand what to do. If you call Dr. Stack office girls there will tell you what test needed (like I believe TMJ test has to be done on open and close mouth position.)
  3. It’s been a while since my last post. I visited Doctor Sims in July of 2009. Dr. Sims was explaining about trigeminal nerve and this explanation was pretty knowledgeable. Some people were following me and ordered the moth piece. I did not order the mouth piece, because something was missing in Dr. Sims explanation. I could not figure out what but I was probably looking for some more explanatory proof. I’ve decided to make an appointment to Dr. Stack. This name also was mentioned in the previous posts. Today finally we made a trip to Virginia to his office. It took so long because I wanted to get done all needed test. I contacted his office in September and his assistant send me a list of required tests. Here they are: In addition to a closed MRI of the TM joints, these are the x-rays that you will need: Submentovertex Panoramic Frontal Tomographs Lateral Tomographs (mouth closed, relaxed, and open views for each side) Lateral Cephalometric Lateral Cervical Spine Frontal Skull I was able to do almost everything paid by my insurance except Frontal Tomographs Lateral Tomographs (mouth closed, relaxed, and open views for each side) Lateral Cephalometric. Even MRI was paid by insurance. Actually, we did open MRI first and Dr. Stock requirements was closed MRI so we did the closed MRI also. Insurance paid for both of them because there were some findings on the open MRI. Here what they found on the MRI: “Evidence of possible anterior disc displacement with the posterior aspect of the disc at approximately the 9 o’clock position oh the close mouth view. On the open mouth view there is evidence of recapture.” (if you read carefully you will understand why the stick test does help. Because on the open mouth view the condition does not exist, there is a recapture. ) Other tests were fine. When I came to the appointment today I immediately asked about the anterior disc displacement and that is what Dr. Stock explained, he actually showed me a picture that helps to understand everything. If you look at the picture of the jaw you can see somewhere where the jaws meet by the ear there is a little disk which looks like an almond. The right position of this almond has to be with the pointy side slightly turned toward the neck. Between this almonds shaped disk and the upper jaw there is like a tissue or mussel. In my daughter case this disk is slightly turned, it is actually perpendicular instead of being slightly turned toward the neck. Because of that the tissue or mussel is pulled or displaced out of the right position that is actually creates a pressure on that trigeminal nerve that Dr. Sims was talking about. Dr. Stock did not talk about trigeminal nerve. On my question about Touret syndrome or ticks he just answered that 80% of the patients with ticks will show displacement of that disk on the MRI, the other 20% might have a perfect disk position but the jaws would be pulled out of the place toward the neck. He told me that he stopped talking on fingers 20 years ago and he relies only on tests. He tolled me that if we decide to do the mouth piece than it has to be worn until the MRI will show the clearance of the condition. (It may take a year or more.) He told that Dr. Sims comes to his office every Monday for training. He follows his technique. I saw Dr. Stock mouth piece; it looked quite elegant I asked about mouth piece being the only option for correction he said that they also do the surgery, to put the displaced disk back. He said that the surgery is not complicated, but it takes 8 weeks of liquid diet afterward. He also said that even after the piece is worn for a year some people might require surgery anyway, because the disk did not go on the right position. We asked, why not to do the surgery right away, he answered that insurance will not pay for the surgery right away but will ask to try a moth piece first. He told that if we decide to go with his procedure he will redo all the tests anyway not because the tests are not good but he makes it a package for his work. He also mentioned that he was able to put the topic about his findings in the health magazine. I made this post just for people to be aware that there are tests that can at list show where the problem is and insurance can pay for majority of them.
  4. No, Dr. Sims did not order the additional x-rays. May be he was waiting for the MRI and than would offer further tests, I do not know, but anyway I have to thank Dr. Sims for helping us to do the MRI through our insurance. He called several times and that is why we got the permission. I was ready to continue with Dr. Sims but he called himself and offered an option of another doctor.
  5. I just want to give some update on our findings. We have received the MRI and the report stated that "RIGHT temporomandibular joint: There is evidence of anterior disc displacement at approximately the 9 o'clock position on the closed mouth view. On the open mouth view there is evidence of recapture." I called DR. Sims and made an appointment. He called me back and said that he received the MRI report and he would find somebody in the city that I can go to with this report and that another doctor would make all the work. That would save us the trip to MD. I was slightly disappointed with this offer. I called Dr. Stack office and made appointment with him. I told them that I have MRI and full mouth x-ray. The lady said that this is not enough and Dr. Stack would also want to have x-rays of: cephalometric; lateral cervical spine; frontal scalp; panaramic, submentovertex; tomogram frontal and Lotaral; This list of tis x-rays just confirmed my fillings (I mentioned them in my posts before) that the problem might be more complicated and the spine or other joints and bones may contribute as well as TMJ into our children's condition. Hope my post will be helpful.
  6. Dear ccc thank you very much for bringing this topic in. My personal opinion (I do not wish to influence anybody else’s opinion on this topic) is that this trigeminal nerve issue with correlation to ticks has to be explored more. I am very scared that the negative experience that people have here will stop the research of this topic. I would want to hear that more doctors ready to look at this issue. May be it is just more complicated than we thought in the first place. I was thinking to post further or not, but decided just to give some info and I hope people will not stop telling about their experiences nevertheless of how good or bad they are. We were able to perform the MRI today by using our insurance. When my daughter was inside I was able to see the pictures on the computer and talk to the lady (she was very kind.) I asked her if she can notice any trigeminal nerve suppression. She told that she can not answer and that we have to wait until the doctor sees the report, but when she started to take the measurements from different points (on the computer) she mentioned that one of the angles of her jaw is moved away from the right position. After my daughter came out I told her about what lady said and my daughter told that she knows what the lady means. My daughter said (she actually showed that to me ) when she put her upper teeth straight (without overbite) on top of her lower teeth we saw that her upper jaw is moved a little bit to the right. When we were at Dr. Sims we were thinking that the problem is only with her overbite now there is probably another direction that we did not notice.
  7. I am trying to do the MRI through my insurance. So far no luck. The x-ray we did with our dentist using my met life insurance.
  8. I have to apologies. I did want to give my best wishes to ccc. Faith I am sill trying to get the MRI done, we did the x-ray already. After the MRI I am planning to get back to Dr. Sims. On our appointment he did not do any stick test. He did not insert anything into my daughter’s mouth; he just took the measurements and pressed some points on her neck, head and back. May be because that time she did not have many tics. Somehow at doctor’s offices she is not ticking a lot. Regarding the price I think it is a lot of money for something that is not 100% proven, but it seams that if you decide to try this that is the price you have to pay. When we were at doctor’s Sims office he told us that so far everybody who tried device noticed the difference. Please, ask him if he had anybody who was not helped. We know now the ccc case. I think that the adjustment of the device is a very hard and tricky procedure. Though Dr. Sims told us that some cases were hard and he had to adjust the device couple of times to nail down the ticks. Good luck on your appointment.
  9. Hi everybody, I want to express my grate regrets to mylittleangel regarding that appointment. How old is your son? My daughter is 11 and when Dr. Sims was taking her open mouth measurements she showed at list 3 cm undergrowth. But her jaw is still in growing stage. Imagine if a child is little (5-8 years old) and his jaw is just in the beginning stage of growth. It may be more difficult to adjust the mouth piece. When I asked Dr. Sims about a little boy on the video and told him that he is still in a process of growing Dr. Sims answered that this boy will have to wear the piece until he is at list 9 and only than he will be able to go to braces. Now, I just want to remind you something that I mentioned previously. When we were at the appointment with Doctor Sims he explained how all this works. As I remember nerve #5 is connected to nerve #8 #9 #11 and #13 . They all are responsible for motor tics of the body. Than all this bunch of nerves goes to the tube on the neck (back part) where as he explained there is like a net of nerves and through this net it can influence any nerve it wants. The vocal nerve is located somewhere there either on that net or very close to the net. That is may be why the vocal is very hard to catch. Also, when you start moving the jaw you can move it back and forth with lots of variations (upper back- lower forward, vice versa, or you may be need to move only one, ) plus what if you have to move a jaw forward but at the same time one side has to be lowered and another be picked up to bring it all to the correct stage. Also, my husband suggested that it might be that not only nerve #5 is involved. What if shoulder bones and upper vertebrates are pressing on something together with nerve #5. As I told before I feel that Dr. Sims does not have enough cases to prove his theory and also it has to be proved (or disproved) in time. Years have to pass by before we can come to the conclusion. Regarding home trial of moving the jaw. We new (and Dr. Sims confirm it) that my daughter’s condition comes from my husband. He is extremely mild; we never pay attention to his little tick on the neck when he was nervous until it happened to my child. When we red about nerve #5 we started to examine positions of my jaw and his and he caught himself on pressing his jaws against each other (like if you in pain or under stress you usually squeeze your teeth) even if he is in relaxed mode, when I am in relaxed mode I usually keep my tong in between the teeth. I advised him to do that and he told me that this technique helps him to control that little tic and takes out pressure. After that I told my daughter to place the tong between the teeth and even open her mouth and move her lower jaw forward if she feels the ticking. In a week she started to complain very bad had ache which she was complaining for 3 days. When I told her not to move here lower jaw any more she answered that now this new position is more comfortable. Regarding the tics she told that she can better control them. Sometimes I do not see them at all but my daughter tells that when she is alone she tics more. I also disappointed why Dr. Sims send us home to do the full mouth x-ray and MRI and nobody else mentioned the MRI yet. Plus we did not try any mouth piece there. He also told us that everybody is being video tape when they try mouth piece. Did he video taped your son when he was trying the mouth piece. This theory is still in trial stage and price for those who is ready to experiment has to be much less. Pease, excuse me for such broad expression.
  10. I do not think post like this will do any good to propagate Dr. Sims. If you do have positive experience with Dr. Sims, than, please, describe it in details. If this is just a statement, than it is pretty offensive for people who post here. All this years I did not post much, but I found many useful advises. As I understood Dr. Sims does not have any one who went through all the stages yet and is tics free. 1. 6-9 month mouth piece. 2. 2-3 years braces. 3. And then I would add another couple of years of wearing retainer and being tics free. So, my calculation would count 6 years and may be even more years taking in count that some of our kids are at a growing stage yet. Plus, do not forget that we know that for some patients with tics the nature takes it course on its own and they can overgrow those tics by themselves. I do not think Dr. Sims has anybody who he treated for even 6 years. On the video I found only one woman which was mentioned going to stage 2. Actually, nurse at Dr. Sims office mentioned that this woman is in braces period. Will this treatment be successful in 6 or 8 years nobody knows; I do not think Dr. Sims can give us this positive answer either. I think Dr. Sims is in need for pioneers who will be willing to go and try this treatment to prove him right. Do I personally believe that Dr. Sims is right? For all this answers regarding my daughter’s condition the cranial nerve problem seams now to me the most reasonable one. Regarding the financial part,. $5000 is not all charges that we would have to face. There is also charge for the braces, which if you go with Dr. Sims would come to $7800 + retainers + hotels + flights. You would easily arrive to x-amount of total. Do everybody here is cable to carry this financial charges I do not know, but what I do know that I have no rights to blame any one who is asking questions and ready to share experiences. For some of us this amount is nothing, for some is OK, and for some it is awfully lots of money, especially with this financial situation all over the country. Only time and pioneers, who will go with this treatment, can prove that this theory works. That was some of my thoughts.
  11. On that visit if we would wont we would be able to do the x-ray at the Dr. Sims office, but we decided to do it through out dentist, because we have insurance and also for the MRI we would have to go to another place anyway. Dr. Sims can not do the MRI at his office, but he would forward us to another place if we wonted. But I believe you have to stay overnight. Dr. Sims said that he can not put any device into my daughter mouth until he will see the MRI (our pediatrician doctor confirmed that braces you can put without the MIR, but for the mouth device it is a requirement to do the MRI.). My husband looked at the paper of another patient and the total was around $5000. We did the full mouth x-ray with our dentist. Now the MRI has to cost $900 if insurance will refuse to pay.
  12. I am sorry I did not post earlier. I was tying to schedule some appointments. Let me start from the beginning. Dr. Sims made a very good impression on my husband and me. He explained how he came to the conclusion that tics are connected with TMJ problem. It took from him 1&1/2 years going to the libraries and research. Before the visit we have received the questioner. I was not too precise and did not answer one of the applications. He asked me to complete to all the questions on all the papers. Guys, who have the appointment with him, my advice is to complete all the needed paper work. Next he brought the paper images of the jaws and explained how all this works. If the jaws are not aligned properly they suppress the nerve #5 (cranial nerve). This nerve is located in the front of the ears right where the jaws meet. This nerve # 5 is responsible for the sensory, teeth grinding etc tics. Then nerve # 5 goes to that place on the neck (probably beginning of the spinal cord, please do not hold me on all these terms, I do not have a medical degree) and meets with nerve # 7, which is responsible for facial tics, then along it meets with nerve #9 which responsible for upper body motor tics, and also where all those nerves meet there is like a nerve net where nerve # 5 ,if it is suppressed and give wrong signals, have the access to all the nerves which are responsible for all part of the body. I believe all this is described in his pilot study. Somebody posted the link to it. After that Dr. Sims examined that my daughter is a classic case. She has a very deep overbite and her lower jaw instead of growing forward grew back. Her open moth measurements are smaller then they should be. Also he examined her neck, back and head and she responded with pain to all the points he suppressed. Actually, she said that that point where the nerve #5 is located always hurts, she thought that that is because she constantly felt that her nose is stuffy and her ear hurts due to she always felt a little sick. All this also explained her head aches that she had from early child hood. After that he explained the steps of the treatment. 1. He puts the device for 6-9 month. He wants it to be worn 24/7. The less you wear it the more time you need for the muscled and jaws to be brought to the right position. Some people need the lower jaw device, some upper jaw, and some upper and lower jaws devices. 2 By the time the device is out, her muscles in the mouth will be trained to be put in a different position. Actually, he told, that if he will be performing the step # 2 (braises), he will cut the device gradually from the back and will put the braces along the way with the rubber bands in order to bring the jaws and teeth in the right alignment. As I understood, he will start doing braces when the tics are gone without the mouth piece being in. Guys if your going to go to the appointments, please clarify that he will start doing braces when the tics are not present even without mouth piece in. Braces may take 24-36 months. 3 Retainer to support the ortho work. Now further steps and financial part. We paid $312 for the appointment. Actually, Dr Sims said that we do not have to do everything with him, if we want, we can find a dentist and if he is willing to do the work he will share all the information with him. To finish the diagnose and to determine which mouth piece my daughter needs, he requested the full mouth x-ray (I hope we will be able to do this through our insurance) and TMJ MRI. Here the fun part comes. My doctor refused to order the MRI through my primary insurance with the TMJ diagnose and he said that they will not approve the MRI . Dr. Sims requested TMJ Dislocation/Effusion images and Avascular Necrosis images with open and close mouth. If my primary doctor will refuse to help and insurance will refuse to pay we would have to pay around $900 for the MRI. Once we will receive the MRI and x-ray we will go back to Dr. Sims and he will determine which kind of device my daughter needs and will put the temporary device in just to see how it works. For that appointment we also have to pay another $312 + if we will decide to order the device another $1600. As I understood in a week we will have to come back and try the actual device on and pay another $312 for the third appointment. So the bottom line 3 appointments $312 * 3 = $936 + device$1600 + MRI$900. When I was writing all this it hit me that if a child needs upper and lower devices is it going to two times more. Dr. Sims explanations and arguments about tics were falling just right into the picture of this sickness. For us it looked just like the missing piece that solves the puzzle which we were trying to solve all those years. I just have some concerns that I would like to share with you. What if a child naturally will grow those jaws? As far as I know upper and lower jaws grow at different times. My daughter still has 6 upper and 2 lower teeth to change but she still has this deep over bite that may prevent the right growth. On the other hand Dr. Sims said when the child is in the growing period, their window for success is very wide. Any way, Dr. Sims would need the x-ray and MRI to find out more. After we will get them we will come back to him.
  13. We are going to have an appointment on Monday, the 29 with my girl. I will try to make a list of questions and will post the answers. When we talked to him (Dr. Sims ) he did not mentioned any surgery, just braces, but I will make sure what is the following procedure.
  14. Dear Chemar, first I would like to thank you for everything you have done for us in this forum. Now regarding magnesium, my naturopathic doctor says that in order for Calcium to be absorbed by the body it has to have sufficient amount of magnesium. He, actually, advised to take magnesium, not calcium. Then magnesium will help absorb the calcium derived from food. Maybe lack of calcium absorption contributed to lack of proper bones development for our kids. (just a guess.).We’ve been fighting TS symptoms and went through all possible treatments long enough to be not over optimistic regarding new inventions, but we did some exercise. I asked my child to put her tongue between her teeth and not to press her teeth against each other for as long as she could ( in order not to suppress those nerves directly.) After a while she told that she knows that the ticks are there but somehow she has better control over them. ?????
  15. Hello, We’ve been having problems with tics for almost six years now and I have went through all the rounds like gluten free diet, chelation, etc. Thank you guys for all the information you have posted for all these years. We talked to Dr. Sims yesterday. His opinion is that TS is a genetic syndrome of underdevelopment of the jaws. By nine years old, the jaws are already about 90% developed. The rest of the 10% that isn’t yet fully developed can be worked on. He said that treatment would require 3 steps: step 1: usually takes 6 months -1 year or maybe more depending on the person. Step 2: braces. Step 3: retainer for the rest of their life (usually such dental work requires a retainer so that it can support the work done). The retainer can be worn couple of times per week. Here is the link to the patent of his advice: http://www.faqs.org/patents/app/20080202530 Here he explains how it works and what kind of nerves are being suppressed by the improper jaw alignment. We scheduled an appointment with him for the end of June.
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