Yes, for once my annoying persistence has finally paid off! I have been informed this morning that my trial surgery has been approved and if successful the insurance company has agreed to pay for the permanent surgery as well. Woo hoo! I could not be any more excited. Now I have to get it scheduled. I will try to keep everything updated here. This only happened because 2 very nice people shared their personal information with me that was proof that the same insurance company as mine has paid for the same surgery for them. After sending this they reviewed the info for about a week and they changed their mind. It is sad that us patients who are suffering from so much pain have to go through so much to get relief. Hopefully this is something that will finally help me get more of a normal life back. I know it probably isn't a magic cure that will make me never have a headache again. It is considered successful if you have 50% relief or more. That to me sounds wonderful. I believe I can handle daily life a lot better with a level 3-4 headache instead of 7-9. We will just have to wait and see. Wish me luck!
Tuesday, July 31, 2012
Wednesday, July 11, 2012
Little rays of hope
I just realized I have not posted anything since April! That is because I have not really had anything to post about. I have had worsened pain over the past few months to the point I have gotten emails from both my jobs because I have been so behind. It just seems everyone in the world wants me to do something and all I have felt like doing is lying in bed with an ice pack. I got another denial from insurance and they will not accept any other requests from my surgeon for that surgery. They say they consider the review and reconsideration process "exhausted", to which my husband states he is exhausted from paying weekly for our insurance. It is very, very frustrating. I have been working on my own member appeal to send in and have asked family members to write some personal letters about how "the headache" has affected my life over the past 3 years. But I also have had 2 things that have been somewhat encouraging to me.
First, my local pain management doctor has his billing dept/insurance specialist talking with the rep from insurance about doing the trial surgery here locally in his office. I had no idea they were even doing that! I did not even know that my pain management doctor did surgeries. I saw him for the first time on May 31. Before then I had always seen a PA in the office except when he came in and met me and shook my hand before they put me out for him to do the cervical epidural. He said he was not going to ask me to do any more injections as they only had such short term relief it really wasn't worth it. He asked if anyone had ever mentioned a stimulator surgery to me before. Umm.. yeah. I have been battling for that surgery for a year now! I told him how my insurance company had denied to pay for it a few times. He says they are saying a lot of things are experimental lately and not wanting to pay for a lot of things now. So I asked him if he could write a letter to the insurance company stating that I need the surgery and he said he would. At no point did he say he would do the surgery! I called the office about a month later to ask if he had ever dictated the letter and they transferred me to the billing department. The lady there ended up being the wife of a supervisor where my husband works and he actually knows very well. They have actually been to my home before. My husband has done mechanic work on their vehicles. She was extremely nice. She said she had been in touch with the insurance rep and trying to get the surgery covered. I was completely dumbfounded as I had no clue this had even been going on. She said she would call me whenever she got it approved so I could schedule a surgery date. That blew my mind! Of course I haven't heard from her anymore and it has been a couple weeks now. I am not losing hope though.
My second encouraging thing is a new chiropractor. I started taking yoga classes and my teacher recommended I see her chiropractor. She does not even see a regular doctor anymore, just goes to see him. He is supposed to be an excellent diagnostician (is that a real word??) and diagnosed a condition she had with her heart. He gave her some kind of supplement to take for that and she has been fine for 2 years now after being on it! I thought it was definitely worth a shot. I had my appointment yesterday afternoon. This was not really like any other chiropractor's office I had been to in the past. They always pushed me into coming for several times a week and crack my neck and send me on my way. But he noticed lots of things no one else has, like one shoulder was higher than the other (I was told that as a child at scoliosis screening at school) and when he did the testing where you resist pushing I could not even stand up. When he pushed I almost fell over every time. When I was lying on the exam table he said one leg appeared shorter than the other also, one hip was pushed forward and the other backward. After a long treatment with all kinds of things that sounded like power tools to me (at one point I was almost sure he was using a buffer on my back) he stood me up again and my legs matched, my shoulders were almost even and my headache had went down very minimally. So he called his wife in to help him do a treatment he called "biocranial therapy". This was painful but I think so worth it! Usually when it rains I am useless and can do nothing but lie down with ice packs and wait it out the pain is so bad. When I walked out of his office it was cloudy and began to rain on the drive home. My headache was still low at around a 2! I came home and went out with my husband to feed all the animals (we have a lot!) then came in and cooked dinner, cleaned up and started working but fell asleep while working. All this time it was storming with lightning, thunder, etc. I had a minimal headache, not a piercing, throbbing, make you wish you were dead headache as I usually do. I slept like a baby. This is without taking any melatonin, benadryl, etc. I normally am up late at night because my head hurts so bad I cannot go to sleep. I am cautiously excited. It is a really sad thing, but now my husband and I are very cautious to be too optimistic about any treatments because it seems sometimes things help at first then the evil headache wins every time. It has been trying to reappear in its usual form and I have gotten occasional more painful jolts but it is still lessened this morning. I know it may not be a magical cure but if this treatment brings the level of my headaches down like this all the time I can definitely be a lot more productive. Speaking of productive, I guess I better get back to work!
First, my local pain management doctor has his billing dept/insurance specialist talking with the rep from insurance about doing the trial surgery here locally in his office. I had no idea they were even doing that! I did not even know that my pain management doctor did surgeries. I saw him for the first time on May 31. Before then I had always seen a PA in the office except when he came in and met me and shook my hand before they put me out for him to do the cervical epidural. He said he was not going to ask me to do any more injections as they only had such short term relief it really wasn't worth it. He asked if anyone had ever mentioned a stimulator surgery to me before. Umm.. yeah. I have been battling for that surgery for a year now! I told him how my insurance company had denied to pay for it a few times. He says they are saying a lot of things are experimental lately and not wanting to pay for a lot of things now. So I asked him if he could write a letter to the insurance company stating that I need the surgery and he said he would. At no point did he say he would do the surgery! I called the office about a month later to ask if he had ever dictated the letter and they transferred me to the billing department. The lady there ended up being the wife of a supervisor where my husband works and he actually knows very well. They have actually been to my home before. My husband has done mechanic work on their vehicles. She was extremely nice. She said she had been in touch with the insurance rep and trying to get the surgery covered. I was completely dumbfounded as I had no clue this had even been going on. She said she would call me whenever she got it approved so I could schedule a surgery date. That blew my mind! Of course I haven't heard from her anymore and it has been a couple weeks now. I am not losing hope though.
My second encouraging thing is a new chiropractor. I started taking yoga classes and my teacher recommended I see her chiropractor. She does not even see a regular doctor anymore, just goes to see him. He is supposed to be an excellent diagnostician (is that a real word??) and diagnosed a condition she had with her heart. He gave her some kind of supplement to take for that and she has been fine for 2 years now after being on it! I thought it was definitely worth a shot. I had my appointment yesterday afternoon. This was not really like any other chiropractor's office I had been to in the past. They always pushed me into coming for several times a week and crack my neck and send me on my way. But he noticed lots of things no one else has, like one shoulder was higher than the other (I was told that as a child at scoliosis screening at school) and when he did the testing where you resist pushing I could not even stand up. When he pushed I almost fell over every time. When I was lying on the exam table he said one leg appeared shorter than the other also, one hip was pushed forward and the other backward. After a long treatment with all kinds of things that sounded like power tools to me (at one point I was almost sure he was using a buffer on my back) he stood me up again and my legs matched, my shoulders were almost even and my headache had went down very minimally. So he called his wife in to help him do a treatment he called "biocranial therapy". This was painful but I think so worth it! Usually when it rains I am useless and can do nothing but lie down with ice packs and wait it out the pain is so bad. When I walked out of his office it was cloudy and began to rain on the drive home. My headache was still low at around a 2! I came home and went out with my husband to feed all the animals (we have a lot!) then came in and cooked dinner, cleaned up and started working but fell asleep while working. All this time it was storming with lightning, thunder, etc. I had a minimal headache, not a piercing, throbbing, make you wish you were dead headache as I usually do. I slept like a baby. This is without taking any melatonin, benadryl, etc. I normally am up late at night because my head hurts so bad I cannot go to sleep. I am cautiously excited. It is a really sad thing, but now my husband and I are very cautious to be too optimistic about any treatments because it seems sometimes things help at first then the evil headache wins every time. It has been trying to reappear in its usual form and I have gotten occasional more painful jolts but it is still lessened this morning. I know it may not be a magical cure but if this treatment brings the level of my headaches down like this all the time I can definitely be a lot more productive. Speaking of productive, I guess I better get back to work!
Friday, April 6, 2012
Having a bad day
Yuck! Since I got up this morning I have felt bad. I had a cold earlier in the week but I thought I had gotten over it. Now I have a sore throat and a swollen lymph node that makes swallowing and turning my head hurt. My muscles are aching all over also so much that it hurts if I walk. On top of that I am extremely sleepy. I fell asleep on the toilet lol! I have been trying to work off and on all day but keep falling asleep at my desk. All this on top of my head feeling as if a knife is stuck in it makes for a bad day. Ok I think I am done whining for now! Hopefully I will be feeling much better by Easter.
Tuesday, April 3, 2012
Appeal
Well I finally got all the records in from all doctors who have treated me for headaches since 2009. The appeal was faxed in and a hard copy mailed in as well today. Wish me luck!
Tuesday, March 6, 2012
Insurance denial
Well I got the dreaded denial letter in the mail. :-(. The insurance company is claiming the procedure is investigational. Interestingly, they only denied one of the procedure codes and not both. I called and talked to the insurance specialist handling my case. She is going to check with the coders and see if something can be changed and re-submit the request or else we will have to do an appeal. More waiting in pain of course. I had another cervical epidural yesterday. Head is still killing me. When I sat up in the recovery room my head actually hurt worse for a minute. It decreased back down to its normal constant pain within a few minutes after they gave me some caffeine though.
Friday, February 17, 2012
Advocacy for Patients with Chronic Illness: Raise Your Hand for Rare Disease Day
Check out this link from a blog I follow (Advocacy for Patients with Chronic Illness). If you go to this site to "raise your hand" $1 will be donated.
Advocacy for Patients with Chronic Illness: Raise Your Hand for Rare Disease Day
Advocacy for Patients with Chronic Illness: Raise Your Hand for Rare Disease Day
Thursday, February 16, 2012
Nerve blocks
I went to the pain management office yesterday for an occipital nerve block. They had me down for bilateral occipitals but since my right side does not hurt I did not want it injected. I asked if he could do a maxillary injection instead and he did. When I told him my whole left side of my head hurts he said he couldn't block all of the areas in one visit but we had to find a combination that worked well like what we did this time. I have done tons of research about the branches of the trigeminal nerve and from what I had read the maxillary branch (V2) should cover up into the temple area. But I have numbness from under my eye to my upper lip and it does not extend all the way to the edge of my face. Sadly this is not even the area that hurts the most. When I pointed to the temple area and asked if the block would spread up to that area, he said no but that only hurts because I clench my teeth and I need to get treated for TMJ. Oh if he only knew the treatments I have gone through for TMJ that were fruitless not to mention drained my savings account because insurance would not cover them. But of course it hurts to talk and so I try to keep it short. I told him I have already tried that.
Also for some reason the occipital did not work like the others I have had. I still have pain that is shooting up the back side of my head as usual like I never even got the shot. I wonder if it is possible to miss the right spot and it not work, or is it possible to get sort of immune to them? Anyway, the shots seem to have ticked off the evil headache. It was really hard to drag myself out of bed today. It is REALLY killing me. Days like this I want to just stay curled up in bed all day, but I can't. Curse you hemicrania continua!!!
Also for some reason the occipital did not work like the others I have had. I still have pain that is shooting up the back side of my head as usual like I never even got the shot. I wonder if it is possible to miss the right spot and it not work, or is it possible to get sort of immune to them? Anyway, the shots seem to have ticked off the evil headache. It was really hard to drag myself out of bed today. It is REALLY killing me. Days like this I want to just stay curled up in bed all day, but I can't. Curse you hemicrania continua!!!
Subscribe to:
Posts (Atom)