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!

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