We are still battling with insurance. This last appeal gave us the opportunity to meet with the appeal committee and present our case. We were told we had 15 minutes to make our case this last Friday After ward the decision would be made behind closed doors and we would be notified by mail of their decision.
There were 10 people in the room. Only 5 of them were to be voting members. They each introduced themselves and what department of the insurance company they represented. I found it interesting that the medical director, ( one of two, who made the decision on the last two appeals) was present, but not a voting member. Interesting also that both him and the nurse in the room were the only people to not give eye contact during the entire time that my husband spoke on his condition. That is hard to read into what that means, but none the less it was very obvious compared to the 8 others in the room who gave total and full attention.
I imagine we will get notified by Thanksgiving the decision. Since our (and most) insurance companies do not cover things they consider "experimental" or "not yet FDA approved" they hide behind that as the excuse to deny coverage. In reality, they don't care how much it is needed, it is simply denied. Even if we explain as in the first appeal, the items that would make us qualify due to their own written rules, we are still denied. First denial was based on "procedure was considered experimental, and based on the "new technology protocol." So when we appealed again outlining how we feel we meet each item in the "new technology protocol" the next denial letter simply put "your providers plan does not cover this procedure." But we are welcome to appeal again if we disagree. Our argument is that it is simply needed. There are no other options and we need this coverage to help my husband not be in pain every day.
So in reality we would love if they approve the device and the procedure, but the reality is they have an excuse to deny coverage and it would be miracle. We believe in miracles, so we hold out hope.
Our next option will be to go to arbitration, and this will be our last recourse.
On different but similar note. We saw a new neurologist. He ordered an "MRV" and an spinal tap. Guess what all normal. Which is good, but a quick fix would be nice. Interesting the DR did not order the MS lab work to be done on the spinal tap. The reason it would have been nice to have been ordered is to for sure rule it out. After all, my husband has deep white spots on his brain and those have been attributed to migraine, but MS patients have them too. Even though MS is "not genetic" both his mom and brother have it and both confirmed with a spinal tap. Since my husband has no other MS symptoms and headache has been argued as to whether it is a symptom or not, one would conclude that he is negative for MS. Fact though is that the medical field really does not understand headaches, nor do they understand MS very well. When we tell some Drs that both his mom and brother have MS, they tend to believe that it is a label diagnosis rather than an accurate diagnosis. Who are they to say that, when they can not figure out how to help my husband.
Not only did we see a new neurologist, we saw a different doctor who does nerve stimulation to seek for a second opinion and to see if he knew of other options. Of course, but doctors have no idea what to do to help. Of course the nerve stimulation doctor says we would benefit from the nerve stimulator, but doubts we can get the insurance company to pay.
Once doctors think it is hopeless to battle the insurance company, they leave you to battle on your own. They will not fight the insurance company, because that is who they work for since they are the ones who pay the bulk of medical cost. (forgetting the fact that we pay the insurance companies)
Speaking of insurance, sleep doctor prescribed a switch from ambient to lunesta, in order to help stop the wake ups in the middle of the night. Denied, must try a different drug first. Tried that drug, no improvement, so we got lunesta approved and well it doesn't work any better. Too bad, because literature says that is what it is best at doing. Went back to ambient.
Pain doctor, who does the botox recommended using pain patches. Denied also, insurance company requires the use and failure of morphine extended release. Really morphine. (I am scared of the opiates in the patch too), but I hear nightmare stories of morphine addictions. It is one thing to be in your 60's or 70's and be morphine addicted, but it is senseless to do this to someone in their 30's. Yet, the pain is real. He took the first 8 days of morphine and it helped reduce pain. Not gone completely, but reduced. Yet I am just not comfortable with this decision and all the future baggage it brings, so for now it is locked up. We need some answers from the doctor, before we can consider this a viable between botox option.
Lastly, Dr gave Botox A instead of Botox B, since the B version had little benefit at all. It has been two weeks and we are just now noticing that it is starting to work. Usually it starts working at 1 1/2 weeks and complete relief at around the 2 week mark. Goal is to get through Christmas, but even that will be close with our last trends with Botox A. However, we still believe in miracles and every day of it working is wonderful. Working a short time is better than not at all.