Here is a short EDS documentary centered on a young woman (around my age) who has EDS. Her name is also Sarah (she has an H though) and she has a similar story to mine. She is in Canada, so some of the aspects of the healthcare system are different for her than me. The documentary is only about 12 minutes long, but it is a wonderful video that portrays many of the realities and struggles of living with EDS. You can watch the documentary, entitled "Still Talking" over at https://vimeo.com/125161284. Sarah also has a Facebook page that chronicles her journey with EDS and other conditions, as well as raises awareness for these conditions, called "Sarah's Shout: Fighting and Raising Awareness for EDS and More". If you would like to follow her for more updates on her journey her page can be found here: https://www.facebook.com/sarahsshout/?fref=ts
Thanks as always for helping to raise awareness and understanding for EDS and related conditions!
Wednesday, February 17, 2016
Hurry up and.... wait
I feel like that is the story of my life right now! We are waiting (impatiently on my end) for so many things right now! As I mentioned in my TMJ post we are waiting to hear if insurance will cover my TMJ treatment or not. In theory they should, but I have feeling that it will take a fight to get it covered as in network. We should hear back about that soon hopefully!
We are also waiting to hear back for out insurance company on whether or not they will cover the Smart Pill motility monitoring test that my GI doctor at the Cleveland Clinic wants done. This is the test that will determine whether or not I am eligible for the gastric stimulator. The insurance lady at the doctors office told us that Blue Cross Blue Shield will not cover this test, but we cannot appeal their decision until we get the denial letter in the mail. We should hear about this next week, but I am not optimistic. We will try to fight it, but from the sounds of it the insurance company has deemed this test "experimental", so they will not cover it. The frustrating part of this is that they will pay $30,000 for surgery to put in the gastric stimulator and then will pay nearly that amount again to take it out if it does not work, but they refuse to pay less than $2,000 to do a test to confirm that there is a good chance (obviously there is never a guarantee) this MAJOR abdominal surgery will help me. We are not sure what will happen if the insurance company refuses to pay for this test, so please keep us in your prayers that we, along with my doctors, can make the best decisions possible.
On the topic of my GI status right now, the new medication (Remeron) that Dr. Cline at the the Cleveland Clinic prescribed helps a little bit, but is not nearly as effective as I would like. It is the best option right now, but I am still praying that we will be able to pursue the gastric stimulator sooner rather than later because I am not eating very much right now and am having nausea and abdominal pain.
We made the decision with my autonomic neurologist to go back on a medication called fludrocortisone which helps raise my blood pressure. I had come off of it last fall because it is a medication that depletes my potassium and is considered a hormone altering medication (corticosteroid), so if possible we wanted to see if I could go off of it. I did ok without it, but I was having black out episodes more and more frequently without it. This is when my vision goes black and if I do not sit down I will faint. I have gotten really good about knowing when I need to sit and haven't fainted in a few years, but blackouts are not a fun feeling! We decided to go back on the medication because it is not worth risking fainting and the fludrocortisone was clearly helping more than we thought! It will take another week or two to see if this helps bring my blood pressure up, but it should since it has worked in the past.
Last week I saw a primary care doctor that my geneticist recommended to me. My geneticist, Dr. Tinkle, used to be located in Cincinnati for many years, so he has numerous contacts here. This primary care doctor is not taking new patients, but since Dr. Tinkle recommended him he was willing to take me on! I had a "get to know you" appointment last week and it went so well! He is extremely knowledgeable on EDS and the related conditions I have, which is so nice! I didn't have to explain anything to him! That just simply never happens! It is so nice to have a doctor that is able to manage all of my health conditions and symptoms who is only ten minutes from my house! I will go back to see him in two months since we only had a 1/2 hour initial appointment.
I sent an MRI I had done of my cervical spine to my neurosurgeon last month just as a follow up. It has been two years since my cranialcervical fusion, so we just want to do an MRI to ensure that all of my hardware (screws and rods) is still in good shape and that everything is looking good. Unfortunately my neurosurgeon had to have surgery on his ankle, so he was not able to get back to me until last week. He wants me to have a Skype appointment with him (he is located in New York and I am in Cincinnati so it is not easy to have an in-person appointment). I have not yet heard back form his assistant to schedule this appointment. Please pray that he did not find anything major and that we will not have to go back to New York (for the third time) for another neurosurgery! I hope that we hear back from his office soon!!!!
On a more positive note I will see a new physical therapist next week. She is another profession who was recommended to me by Dr. Tinkle, my geneticist. She is very knowledgeable about EDS and I am excited to get back into PT. Many EDSers benefit from PT because by strengthening our muscles it can help to support our joints. It is VERY important, however, to find a PT who is knowledgeable about EDS because a PT who does not understand EDS can do more harm than good. This PT is located very close to my house, which is nice since when we were in Chicagoland I had to drive about 45 minutes to get to the PT office! I will start off seeing her twice a week and then we can decide from there what frequency will work best.
As you can see we are waiting on a number of different things right now and I am trying to be patient, but I am not a very patient person by nature ;) I will update as we start to hear back from the people we are waiting on, but don't expect news anytime soon. Insurance companies work at one speed: slow. I think that is all I have to update on right now. As allows thank you for all of your thoughts and prayers they mean so much to me!
We are also waiting to hear back for out insurance company on whether or not they will cover the Smart Pill motility monitoring test that my GI doctor at the Cleveland Clinic wants done. This is the test that will determine whether or not I am eligible for the gastric stimulator. The insurance lady at the doctors office told us that Blue Cross Blue Shield will not cover this test, but we cannot appeal their decision until we get the denial letter in the mail. We should hear about this next week, but I am not optimistic. We will try to fight it, but from the sounds of it the insurance company has deemed this test "experimental", so they will not cover it. The frustrating part of this is that they will pay $30,000 for surgery to put in the gastric stimulator and then will pay nearly that amount again to take it out if it does not work, but they refuse to pay less than $2,000 to do a test to confirm that there is a good chance (obviously there is never a guarantee) this MAJOR abdominal surgery will help me. We are not sure what will happen if the insurance company refuses to pay for this test, so please keep us in your prayers that we, along with my doctors, can make the best decisions possible.
On the topic of my GI status right now, the new medication (Remeron) that Dr. Cline at the the Cleveland Clinic prescribed helps a little bit, but is not nearly as effective as I would like. It is the best option right now, but I am still praying that we will be able to pursue the gastric stimulator sooner rather than later because I am not eating very much right now and am having nausea and abdominal pain.
We made the decision with my autonomic neurologist to go back on a medication called fludrocortisone which helps raise my blood pressure. I had come off of it last fall because it is a medication that depletes my potassium and is considered a hormone altering medication (corticosteroid), so if possible we wanted to see if I could go off of it. I did ok without it, but I was having black out episodes more and more frequently without it. This is when my vision goes black and if I do not sit down I will faint. I have gotten really good about knowing when I need to sit and haven't fainted in a few years, but blackouts are not a fun feeling! We decided to go back on the medication because it is not worth risking fainting and the fludrocortisone was clearly helping more than we thought! It will take another week or two to see if this helps bring my blood pressure up, but it should since it has worked in the past.
Last week I saw a primary care doctor that my geneticist recommended to me. My geneticist, Dr. Tinkle, used to be located in Cincinnati for many years, so he has numerous contacts here. This primary care doctor is not taking new patients, but since Dr. Tinkle recommended him he was willing to take me on! I had a "get to know you" appointment last week and it went so well! He is extremely knowledgeable on EDS and the related conditions I have, which is so nice! I didn't have to explain anything to him! That just simply never happens! It is so nice to have a doctor that is able to manage all of my health conditions and symptoms who is only ten minutes from my house! I will go back to see him in two months since we only had a 1/2 hour initial appointment.
I sent an MRI I had done of my cervical spine to my neurosurgeon last month just as a follow up. It has been two years since my cranialcervical fusion, so we just want to do an MRI to ensure that all of my hardware (screws and rods) is still in good shape and that everything is looking good. Unfortunately my neurosurgeon had to have surgery on his ankle, so he was not able to get back to me until last week. He wants me to have a Skype appointment with him (he is located in New York and I am in Cincinnati so it is not easy to have an in-person appointment). I have not yet heard back form his assistant to schedule this appointment. Please pray that he did not find anything major and that we will not have to go back to New York (for the third time) for another neurosurgery! I hope that we hear back from his office soon!!!!
On a more positive note I will see a new physical therapist next week. She is another profession who was recommended to me by Dr. Tinkle, my geneticist. She is very knowledgeable about EDS and I am excited to get back into PT. Many EDSers benefit from PT because by strengthening our muscles it can help to support our joints. It is VERY important, however, to find a PT who is knowledgeable about EDS because a PT who does not understand EDS can do more harm than good. This PT is located very close to my house, which is nice since when we were in Chicagoland I had to drive about 45 minutes to get to the PT office! I will start off seeing her twice a week and then we can decide from there what frequency will work best.
As you can see we are waiting on a number of different things right now and I am trying to be patient, but I am not a very patient person by nature ;) I will update as we start to hear back from the people we are waiting on, but don't expect news anytime soon. Insurance companies work at one speed: slow. I think that is all I have to update on right now. As allows thank you for all of your thoughts and prayers they mean so much to me!
TMJ Specialist
A couple of weeks ago I was able to get in to see a TMJ (temporomandibular joint) expert who also specializes in EDS. He is only about an hour away from my home and was well worth the trip! It is so nice to see doctors who are not only knowledgeable about their speciality, but also know, work with, and research EDS. EDS causes complications in nearly every part of the body since it is a generalized connective tissue disorder (affects ALL of the connective tissue in my entire body). The issues us EDSers have tend to be unique to us and many doctors have no idea what to do with us. This was not the case with Dr. Mitakides! He says I am a difficult, puzzling case (what's new there!), but thankfully because he is so familiar with EDS it will be no problem for him! In contrast the last "expert" I saw for TMJ had no clue what complications EDS causes and wanted to treat me just as she would any other patient.
At our first appointment with Dr. Mitakides he did a physical examination of my neck, jaw, head, and face to determine what affects my wacky jaw position was having on the other structures of my face, neck, and head. He determined that my jaw is in a much worse position on the left than the right, which we knew because during my last surgery in June of 2014 (can you believe I have gone over 1.5 years without surgery?!?!) my jaw was dislocated. He said this is not an uncommon complication for EDSers, particularly those of us who have neck fusions because they cannot hyperextend our necks so they pry our jaws open too far. The next time I have surgery he recommended to have the anesthesiologist use a pediatric tube for intubation because the chance of jaw dislocation are lower with a smaller tube.
After he did the physical examination I had x-rays taken of my jaw to see what my jaw looked like both open and closed. He expected to see abnormalities on the left, but the x-rays showed that the right side of my jaw did not line up correctly either. Your jaw is supposed to sit on a pad of cartilage when it is closed, but my jaw slides past that pad of cartilage on both sides, so it sits bone on bone. In addition to this, the jaw is supposed to rotate and then when it reaches its full degree of rotation it pivots forward. My jaw rotates normally, but then does not pivot forward the way it is supposed to. Because of this my jaw does not open as far as it should. I should be able to open it wider than most people because of the hyper mobility that EDS causes in all of my joints, but my jaw is on the very low end of "normal" for someone who is not hyper mobile. This is why it is difficult for me to eat an apple whole or open my mouth widely at the dentist.
After discussing it my husband and I decided that we would like to pursue treatment with Dr. Mitakides. The treatment that he uses is a splint that will help reposition the jaw. It is a piece of hard plastic that is molded to my top teeth. I have to wear this splint all of the time, except for when I am eating. This splint helps the jaw to go back into the correct position. I will go back between 3 and 6 times for him to adjust the splint as my jaw keeps shifting so that he can assure that my jaw ends up in the correct position. There is also the possibility that I might need to pursue orthodontics to get my bite aligned, so that my jaw will be able to get to the position we need. We will not know this for several months, however. After he determines that my jaw is in a good place and my symptoms have subsided I will go back to see him about every 6 months to ensure that everything looks good. I will also only have to wear my splint at night once my jaw is where he wants it to be.
The goal for me specifically is to get my jaw to shift to the right because it is deviated to the left and slide forward so that it sits on the pads of cartilage that it is meant to rest onto of. I can already tell that my bite has changed drastically and it has only been just over a week since I got my splint! My jaw is still in some pain, but my symptoms have improved dramatically! I will go back in two weeks to get the splint adjusted and he mentioned that he may do a botox injection in my chin because the muscles there are constantly spasming. With these muscles constantly tight they are part of the reason my jaw is being pulled out of proper alignment. I am so grateful that we found someone (finally!) who can help me! Jaw pain and teeth grinding was the first problem that I was diagnosed with when I was a young teenager, so proper treatment has been a long time coming!
We are still waiting to hear if my health insurance company will pay for the splint and office visits or not, so please keep your fingers crossed that they will!
At our first appointment with Dr. Mitakides he did a physical examination of my neck, jaw, head, and face to determine what affects my wacky jaw position was having on the other structures of my face, neck, and head. He determined that my jaw is in a much worse position on the left than the right, which we knew because during my last surgery in June of 2014 (can you believe I have gone over 1.5 years without surgery?!?!) my jaw was dislocated. He said this is not an uncommon complication for EDSers, particularly those of us who have neck fusions because they cannot hyperextend our necks so they pry our jaws open too far. The next time I have surgery he recommended to have the anesthesiologist use a pediatric tube for intubation because the chance of jaw dislocation are lower with a smaller tube.
After he did the physical examination I had x-rays taken of my jaw to see what my jaw looked like both open and closed. He expected to see abnormalities on the left, but the x-rays showed that the right side of my jaw did not line up correctly either. Your jaw is supposed to sit on a pad of cartilage when it is closed, but my jaw slides past that pad of cartilage on both sides, so it sits bone on bone. In addition to this, the jaw is supposed to rotate and then when it reaches its full degree of rotation it pivots forward. My jaw rotates normally, but then does not pivot forward the way it is supposed to. Because of this my jaw does not open as far as it should. I should be able to open it wider than most people because of the hyper mobility that EDS causes in all of my joints, but my jaw is on the very low end of "normal" for someone who is not hyper mobile. This is why it is difficult for me to eat an apple whole or open my mouth widely at the dentist.
After discussing it my husband and I decided that we would like to pursue treatment with Dr. Mitakides. The treatment that he uses is a splint that will help reposition the jaw. It is a piece of hard plastic that is molded to my top teeth. I have to wear this splint all of the time, except for when I am eating. This splint helps the jaw to go back into the correct position. I will go back between 3 and 6 times for him to adjust the splint as my jaw keeps shifting so that he can assure that my jaw ends up in the correct position. There is also the possibility that I might need to pursue orthodontics to get my bite aligned, so that my jaw will be able to get to the position we need. We will not know this for several months, however. After he determines that my jaw is in a good place and my symptoms have subsided I will go back to see him about every 6 months to ensure that everything looks good. I will also only have to wear my splint at night once my jaw is where he wants it to be.
The goal for me specifically is to get my jaw to shift to the right because it is deviated to the left and slide forward so that it sits on the pads of cartilage that it is meant to rest onto of. I can already tell that my bite has changed drastically and it has only been just over a week since I got my splint! My jaw is still in some pain, but my symptoms have improved dramatically! I will go back in two weeks to get the splint adjusted and he mentioned that he may do a botox injection in my chin because the muscles there are constantly spasming. With these muscles constantly tight they are part of the reason my jaw is being pulled out of proper alignment. I am so grateful that we found someone (finally!) who can help me! Jaw pain and teeth grinding was the first problem that I was diagnosed with when I was a young teenager, so proper treatment has been a long time coming!
We are still waiting to hear if my health insurance company will pay for the splint and office visits or not, so please keep your fingers crossed that they will!
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