Did anyone here get a PET scan covered by insurance? From what I have read, it is the best imaging technique for confirming an Alzheimer’s diagnosis, and for differential between AD and MCI, and between AD and FTD (which seems important from a medication standpoint). But, it also seems like insurance will not pay for a PET scan. It seems doctors always do an MRI first and then follow with a PET in some cases, but then the insurance doesn’t cover the PET because they consider the PET “investigational.” I’d rather skip the MRI and go straight to the PET if it is more definitive.
DH has his follow-up on July 20 to go over the results of his neuropsych tests. My guess is the neurologist will diagnose “Mild Cognitive Impairment” (since he is still working, etc.) in which case I was going to ask for a PET. One reason is I am very concerned about his driving, and the other is I also don’t think the insurance will cover any meds for MCI, where they will for AD. I friend of mind told me today that her husband’s disposition improved quite a bit once he started Exelon, so I was thinking maybe my husband could benefit from that, too.
It will be interesting to hear his test results. DH told me there were things he “messed up” on and some things he couldn’t do. The tests took 6 hours with a break for lunch – poor dear; I don’t think I could tax my brain for that long. He mistakenly dialed 411 instead of 911 when given a phone and told to call for help for a medical emergency. A few questions later, when asked what to do when outside and he smells gas, he said, ”go to a neighbor’s and call 911.” That made him realize his earlier mistake and he asked to correct it… When doing the clock, he drew the hands the same length, and the tester asked which was the short, and which was the long hand. He said he answered incorrectly but over the lunch break realized his mistake and asked to correct it when he returned. (Do they let them go back and change earlier answers? It’s good that he can remember that he made a mistake, but does that negate the mistake?) He said when he was reading words, he was able to read a lot of them, but they got harder and harder and they got to the point where he could not read any of them. He said he was able to recall up to 6 numbers in a sequence, but then when they mixed numbers and letters he could not do that…. On the story recall he could get half the facts the 1st time, then they read the story again, and he got 75% of the facts, then they read it again and he thinks he got all the facts. Is that normal? I suspect the parts that really get you on these tests are not the mistakes you know you made, but the ones you are unaware you made. Oh well, we shall see. I will not be surprised though if, like Catherine’s and some other’s husbands here, mine passes everything.
But back to my original question – did your insurance pay for a PET scan?
My insurance paid for the MRI and PET scan and the CT scans as well. The important thing is that the neurologist codes the claim correctly. With insurance companies, it is electronic filing now, so the providers must put in the proper codes to be paid and to prevent the "investigative" denial. Others have said that their insurance didn't pay, some have said it did. It depends on your policy and the code submitted.
Some of the tests our spouses have taken were passed with flying colors.....100% at stage 4...BUT they can't name three animals! They can't put a complex sentence together! Their visual perception is off. We don't know what parts of the memory and what parts that control muscles are going to go first. It really doesn't matter. They will all go, and the tests can't tell you how fast they will decline, or what they should be capable of still doing. Please don't fall under the spell (and the money that is being charged to give those tests) that the tests will help in any form or fashion. The spouses will continuely get worse - at different rates and at different things. You must learn to adjust and take over whatever they no longer can do. Tests can't tell you that either.
My hb did not have a PET scan. The VA will not cover it plus I think due to family history they figure they are right.
there are two types of MCI - MCI and aMCI. My sister suffers the first since her stroke, my hb aMCI. Difference is the 'a' which stands for amnesic. My sister will remember later, my hb rarely does. And yes, it is not unusual that later they remember they messed up. It is good that on repeating things he remembers it. I would think he is still early in the process. As for driving, my hb still does but rarely by himself due to forgetting how to get to places. the last visit the neurologist drilled me on his driving skills. He still uses defensive driving taking care to leave space (he drives more like me now) and not waiting until the last minute to slow down. His reflexes are still very good, he reacts appropriately to situations. I know there are those here who feel once they are diagnosed the driving should stop immediately, but I do not believe that and neither does his neuro. I believe it has to be on an individual bases because they all are affected in different ways.
Keep us informed as to what the test show. If you hb is still working then he is still high functioning.
As far as I know, insurance will not pay for a PET scan of the brain, which is why it is not a normal part of an evaluation. However, if you are in a drug trial, it is covered by the drug company.
As for the testing - Among a host of other things, they are testing short term memory and response time, so no, they should not be allowed to change an answer because they remembered it later. All tests are set up differently with different criteria for response time. The 6 hours of testing that your husband had gives an excellent accounting of his functioning in all areas of his brain, including judgement and reasoning, i.e. being given the phone and asked to call for medical help. The mini-mental that we all hate so much is a mere snapshot that does NOT measure behavioral changes, impulse control, frontal lobe problems, or judgement and reasoning. (I may not be familiar with each test, but I worked for 25 years in Special Education, and did testing as a speech/language therapist for 10 years, so I know generally how cognitive tests work.)
Mary22033- Yes insurance will sometimes pay for the PET scan, but it must be coded properly, and you may find out that they back out of the coverage....I demanded a pet scan for my dw in Oct 2009, and it had been preapproved. However, after Blue cross got billed, they declined it. I called and they mentioned the coding, and after 15 calls back and forth from the Dr, the hospital, bluecross, I got the coding corrected. At that point, Blue Cross declined the claim, because it falls under mental health benefits, and our policy excluded that./ I even had Mary call for me, and she was very effective, and again we received a third decline, since the Petscan fell under mental health benefits. The charges for the scan was $4582.00 Finally, I went back to the original doctor who had ordered the petscan.... The office girls were great, and they changed the coding once more to "determine if my wife's breast cancer had metastasized to the brain. A week later, blue cross issued the check for 80%. My understanding of all this is that the insurance carrier does not want expensive tests... In my case, mri's. ct scans, showed no abnormal issues with alz, but the pet scan did reveal alz, and it was sufficient to use as evidence when we filed for ssi disability. My advice for you is to be prepared to pay for it... even if it is "pre-approved" by the insurance...In actuality, the Hospital did offer to settle the charges for about $2,300 if I paid it all immediately. I spent 7 months, hundreds of calls, and probably 80 hours time just to get this pet scan covered... I still laugh when I think that breast cancer can spread to the brain....It was a very resourceful way of getting the bill paid, but I feel that the pre-approval should have been honored...Had I known that I would be billed, I think I may have chosen not to have the PetScan...
Yes, our insurance at the time, covered a PET scan. I'm not sure about coding or anything, but have often wondered if it was because the PET scan was done at a large, teaching hospital. The doctor ordered it and it was done. We were very fortunate with that one.
My understanding is that Medicare does not pay for a PET scan for dementia unless the doctor says that it is necessary to determine the type of dementia. So, since Medicare wouldn't pay, our insurance wouldn't either. For that reason we didn't have one. I would have liked to, but I suppose it wasn't really necessary.
My husband was first diagnosed with aMCI and both Medicare and our insurance paid for Aricept and Namenda.
Thanks for the information, everyone. We have blue cross/blue shield but it does include mental health benefits, we pay extra for the best policy coverage (thank God! Wish we had bought Long-term Care Insurance too...). I was hoping to get a PET scan under the coding for a FTD differential diagnosis, since my husband has had behavioral issues. I do not think he has FTD, but just thought that could be used to justify the PET scan.
Janet, that is interesting that they prescribed Aricept and Namenda for MCI. The Mayo clinic website says this about MCI and medications: "Alzheimer's drugs During the first year of a three-year study, the rate of progression from mild cognitive impairment to Alzheimer's was much lower in the people who took donepezil (Aricept). However, that difference disappeared by the end of the study.
An Alzheimer's drug called galantamine (Razadyne) increases the risk of sudden death from heart attacks and strokes when used in people who have mild cognitive impairment." I think they are referring to this study: http://www2.cochrane.org/reviews/en/ab006104.html
Maybe I have done too much research; it seems the reality of doctors and insurance companies do not line up with everything you read.
One of the reasons I would like a more definitive diagnosis, is the driving issue. We have had multiple events that have caused me and my son to worry about him behind the wheel. Basically he has the opposite of attention deficit disorder. He is singularly focused on one thing, and if he is behind the wheel, and that one thing that he is focused on is NOT his driving - not so good! I know this will be a very touchy issue, but I think it would be easier if there is a picture of his brain and we can say -see, this is why you shouldn't be driving. His judgment has also deteriorated – he is unsure of himself and he often calls me and checks that he’s doing the right thing (NEVER would have done that 2 years ago). I think this type of deficit could also affect his driving.
Thanks again for your responses. It helps a lot to know what others have experienced. It gives me the illusion that I can have some control over this situation….
My husband was diagnosed with dementia two years ago. I believe he might have had it at least two years longer than that. After his psychological testing, we were given the diagnosis and the doctors told him immediately that he should not drive any longer. I'm afraid I let him drive around the neighborhood, picking up things at our local Kmart and pharmacy, etc. But the next time he saw the doctor, six months later, they told him he should not again, and he has not driven since then. I had a difficult time with him at first about that but he eventually realized he should not.
He saw the neurologists this past week and they asked me if I wanted him to be tested psychologically again to see how much he had progressed. I told them no because he was very agitated during that first testing; he hated doing it. I didn't really see what benefit we would get from doing it again. I think I know the deterioration myself, I don't need the testing to give me any answers and I don't want to put him through that again. He can't have an MRI because he has a pacemaker, and I don't think I want him to get a PET scan unless it is absolutely necessary. He's doing pretty well on his meds now and I don't want to "rock the boat."
To get back to the driving issue, though, I think you should take the keys away.
Just for the record, My husband had a PET scan and it WAS covered by insurance. I remember it was a $5000+ expense ..as listed on the first notice we received that says THIS IS NOT A BILL on the top. Never got a bill aftr that.
Frank is correct..just depends on how the doctor codes the request or orders...........
Mary22033, my DH had first neuropsych tests and MRI. Before the neuro tests the neurologist DX was MCI which I only know because I asked for report. The neuropsychologist report indicated a significant loss of cognitive functions in various areas and because of the particular deficits he suggested it might be a fronto temporal type of dementia. DH has a PhD plus post doc in Chemistry and his neuro tests showed him still above average but the psychologist noted it was quite below where someone of his education and experience should have been. (plus his interview with DH) (A year later his tests indicate his IQ dropping from 99th percentile to 66th)
So then the neurologist ordered a PetScan for the sole purpose of trying to determine whether it was FTD. No one has ever used "stages" in describing him but he was probably stage 3 at this point January 2007. The MRI can the PetScan came back with nothing definitive for any type of dementia.
We had Kaiser, an HMO, at the time and it was fully covered. I tell you this so you won't rely too heavily on the PetScan at this early stage in the dementia. It drove me crazy in those early months with no physical PROOF. Still, no neurologist has been willing to say for certain whether it is AD or FTD although two have leaned toward FTD for exactly OPPOSITE reasons.
I always ask for medical records and it was interesting to read the reports of the first neurologist. First read: MCI. Second: Dementia, probable Alzheimer's. The third which was just a couple weeks after second read: Dementia, probable (or possible, can't remember) FTD. The second opinion neurologist back in the beginning said it was too early to tell if he had any sort of dementia and why didn't we just wait as time would tell. Fine for him to say. I don't think they all put a lot of thought into the details which mean so much to us.
rmary22033 - my hb was first diagnosed with aMCI in 2008 and put on galantamine. I read the black box warning about increasing the risk of heart attack but felt I would rather him go from a heart attack instead of this disease. In 2009, just 6 months later after neuropsych testing it was changed to dementia of the Alzheimer's type. The reason I think is cause the memory loss - now listed as dementia - now had gone from a big inconvenience to a major impact on life. They say a large number of people never go beyond mild cognitive impairment and some will improve. I so prayed for that but it was not to be.
We moved from Northern Virginia after DX in 2007 which meant change in doctors. I asked his neurologist out here a year ago for a new PetScan to see if it would now show any physical evidence of FTD vs. AD. He wouldn't order it as he said it didn't matter and that his treatment would be the same either way. He said that if there was a different treatment for FTD than for AD he would definitely order another one.
I told him it was my understanding that it was important to know which it was and that I had read that some meds for AD could be harmful to FTD patients. He said that wasn't so and that it didn't make a difference. At the time DH was on Exelon Patch and Namenda. (Now he's just on Namenda as he didn't like the patch or pills so quit using them.)
He also said he believed it probably was FTD because DH is so aware of his symptoms and that AD patients are NOT. I had always heard the opposite is true, but there appeared to be no arguing with this guy. He has since moved and I will again be seeking another.
MARY22003: Is that your zipcode???? We lived in Annandale, VA for 25 years and moved out here to Eureka Springs in Northwest Arkansas after the DX which required early retirement for DH.
Yes that is my zip. We drive to Annandale every Sunday - for church :)
How frustrating for you to have researched these topics only to have the physician disregard it all! I would check with your insurance first to see if they would cover the PET for a differential diagnosis of FTD vs. AD. Maybe since he had one in 2007 they won't....but it wouldn't hurt to ask. And I would tell the insurance company your husband had been prescribed Exelon which shouldn't be given to FTD patients and that you are concerned about that (http://memory.ucsf.edu/ftd/overview/ftd/treatment/multiple/medications-avoid).
Here is a link which shows the medicare criteria for performing a PET for differential diagnosis of FTD vs. AD (as of 2004): http://www.cumc.columbia.edu/dept/radiology/pet/pdf/Alzheimers_final.pdf -Minimum of six months of documented cognitive decline from unclear origin -Recently established diagnosis of dementia that meets the diagnostic criteria for both Alzheimer's disease and frontotemporal dementia (FTD) -Previous evaluation for other neurodegenerative diseases or causative factors -Comprehensive clinical evaluation by a physician experienced in the diagnosis and assessment of dementia -Scan performed in an accredited PET facility and the reading of the scan done by an expert with substantial experience in interpreting such scans in the presence of dementia -A SPECT scan or previous FDG-PET scan has not been obtained for the same indication
If the 2007 scan was for intial diagnosis of symptoms, but now you need one for differential diagnosis could that be a different indication? I'd at least try.
Hi Mary, thanks for info. I researched the usf site many times back in the beginning. For the first two years seemed I was buying books, researching online, calling doctors and other people resources 24-7. That's when I wasn't readying our home to sell, moving half way across country, getting my husband retired, trying to locate the money he had deposited in CDs but couldn't remember where, plowing through years of paperwork he had been in charge of.........everyone knows the drift.
Eventually I guess I wore out. Especially after completing a total renovation on the house we now live in. Since I've been living with the symptoms and slow and then rapid declines I'm less obsessed like I had been in determining what type of dementia this is. I want to get him a decent neurologist since last one moved out of state but I have limited energy these days and try to spend it on enjoyable times for him and me. All that could change overnight like so much else. I'm so glad I'm not back in those early days anymore as they were hell.
If I hadn't moved out here we could have done lunch!
I am a little strung out on research - it's like an addiction. Again, it gives me the illusion of some control, even though I know it is just an illusion.
I do feel some burden has been lifted after a heart to heart with my husband last night. He asked, "What will we do if I do have Alzheimer's?" That was the first time he has admitted he may have issues. He related more of his "mess ups" on the neuropsych tests, so I think that really has him concerned. Our talk moved us from the "me against him" mode, to the "we're in this together" mode that I desperately needed. I told him to stop worrying about the tests. I assured him that whatever the outcome - alzheimer's, MCI, stress, depression - that I love him and he has a family that loves him and that we'll deal with it together. I pointed out that we are both getting older everyday (59 and 51) and let's face it - things are going to start falling apart. Sometimes maybe sooner than expected, but we'll deal with it. I told him that between his mind falling apart and my body falling apart, that between the two of us we can probably function fairly well as one unit. Which is what God intended anyway :)
Mary, your husband needs to stop driving. Now! It's often the hardest issue a spouse has to deal with ... it certainly was for me ... but once I accepted the fact that I wouldn't be comfortable with my wife driving with our grandchildren in the car, I knew I had to make her give me her car keys, despite her protests. I could not have lived with the guilt, nor could my wife, had she continued to drive and then accidentally injured or killed someone when I knew she should no longer be driving.