I am a patient (not a medical professional!) who has been dealing with hemicrania continua since 2009. This causes constant head and facial pain on one side of the head 24/7. I am looking into occipital nerve stimulation as a treatment as I have tried everything else.
Wednesday, November 16, 2011
Feeling a little hopeful again
Yesterday my wonderfully hunky hubby drove me to an appointment with a new neurologist in Birmingham at UAB. I really like this doc! He wants me to try Celebrex, which I am a little bit scared to do I admit after my encounter with the Indocin, but he says it is much easier on the stomach than the type of anti-inflammatories like Indocin. I am trying it while he talks with some of his headache specialist buddies at Mayo and Cleveland clinics. If the Celebrex does not magically cure me it is probably on to the stimulator. But this doc is completely different than the last one. He says that I am a special case as I cannot tolerate the Indocin and he really doesn't see me NOT being able to get a stimulator! But he only recommends 2 places getting the surgery done - Mayo Clinic or Cleveland Clinic. Hmm.... that would be very interesting to see how me and my family handle traveling for that. I'm not really sure how we would do that but whatever it takes I don't care. I'm sure we could figure it out if it meant a chance at having fun mommy/wifey back again! Of course a clinical trial is still an option we are considering, and I am on a waiting list for one for Mayo Clinic and my new doc is going to talk to the doc who added me to that list. Maybe I will have more good news soon. At least this is a much more upbeat post than my last one!
Sunday, November 13, 2011
Maybe I'm the one...
I was thinking of the song Psycho by Puddle of Mudd and can't help but think of my latest conversation with the "insurance specialist" in the NC doctor's office. I love the doctor and the fellows that I have spoken to and also every other person on staff that I have spoken to and/or met.... that is except for the insurance specialist! For some reason it just feels like she has a strong dislike of me! That is where the song comes in, feeling somewhat paranoid. I have no idea why she would dislike me but she just is very short with me. When I told her that I had talked to a few people that fought insurance companies and got the occipital nerve stimulator implanted, they got it through the appeal process, meaning I can't appeal anything until they submit a request, she said "Well I just don't believe that, these people must not have understood exactly what you are talking about" to which I calmly replied yes, we had extensive discussions and it is the same exact surgery, to which she replies she still doesn't believe it, like I am just making things up. She then says "Well maybe you can just go to whatever doctor they went to" at which time I say that I would like my medical records so she promptly transfers my call to the medical records department. The person there of course was very nice and helpful (go figure). Oh well, starting over again is a little depressing but I have been waiting since July and she has done nothing. She talked to a representative from my insurance carrier and faxed some medical studies about occipital nerve stimulation to her. I spoke with the insurance rep who actually was much nicer than her who was confused as to why only research info was faxed to them. They need the doctor to actually request coverage for my surgery before they can review and make a decision. The insurance specialist at his office will not because she says it will be immediately denied. I feel like this one employee is causing the doctor to lose money. Maybe they will figure it out eventually. At first I thought about calling and speaking with the office manager about it but then I just decided to forget it. We chronic pain patients already are on thin ice with some folks thinking we are nuts already, like we are imagining our illnesses and they are "all in our heads". I don't have the energy to talk to another person unless I have to. I know that is sad but it is true. I don't want to talk unless it is a person who is important to me I am talking to, as each word actually hurts my face and head to speak. Anyway, enough whining from me today. I am going to try to add a link to the YouTube video for that song. Of course for you other headache sufferers you might want to turn the sound down like me!
http://youtu.be/pDdeOncpD5E
http://youtu.be/pDdeOncpD5E
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