I was just wondering how frequently your LO's have had an MRI or CT scan to determine the progression of brain atrophy. My DH has his six month follow-up appointment with the neuro tomorrow and I am bringing it up to him. The last one my DH had was in December, 2010. He still functions fairly well but his memory is getting worse.
My dh had 2 MRI's in 3 years. I asked the dr about a year before he died if he should have another one and he said..."NO"..."We know what is wrong with him and the treatment would not be different"....and I do believe the dr. was right. Of course, I never had a doubt that Jim had AD and he was a classic case study following the steps like clock work. There was never anything in his progress that made me think he had anything else.
The PCP did a CT initally (before the Dx) to rule out a tumor. I guess that is why she ordered it anyway because she never told us the results. We took an electornic copy to the univerity neuro center where after 3 days of talk testing they pronounced the Dx of MCI. (5 years ago)
We switched health plans and gave them the Dx of AD which was not disputed (or confirmed) by the PCP there. He has provided all the meds we have ever asked for.
I think a scan may help getting thorugh the denial of the inital Dx but I would not waste the time or money now. As Judith has described if the symptoms are so clear and it aint gonna change any medical care plan . . .
IMHO - To perform repeated scans on someone with classic symptoms just to watch the "progression of atrophy" seems just kinda voyeristic to me. . . .
In Aug.-Sept 2006 my DH had all the pertinent tests as part of his Neuro-psych Evaluation,and was Dxd with VaD. At Discharge, we were set up with a new Dr. and other support services. With the agreement of his PCP, about 6 months later, that DH would undergo any further testing on an event driven basis only. He was recognzably at the early end of Stage5. Hs Neuro-Psych Dr. was so informed. Our decision, made about x 6 months after his September Discharge, and after I had had him taken to the ER with TIAs 3 time (one of which with classic stroke symptoms which lasted a few hours), and each time, for which CT scans, etc. were done and showed nothing. No meds were administered. Symptoms had or soon cleared and 5-8 hours later he was sent home. My job had been to watch him and keep him on the gurney,/in the room. They did keep him overnite for the last one, because they actually saw the symptoms, but those were gone by the time they got him a room. Never the less, a year later his Neuro- Psych Dr. gave me a laundry list of tests to schedule for DH, some of which were the type our PCP was charge of. I reminded the Dr. of our decision that we'd test if/when events waranted, asking why? His response--"It's been a year since the last ones."
My husband had a CT and MRI in 2008 and none since - really no need although personally I would like to know if the atrophy has gotten worse. Unless some weird symptom shows up that does not go with alzheimer's I doubt the doctor would do another one.
Elaine: DW was Dx'd with AD in 07 after scans and "talk testing" at two centers. I'm sure, in part, the dx was easily arrived at due to family history (mother confirmed by autopsy). Once the possibility of an organic cause; tumor, venous abnormality, etc. was ruled out I concluded that little could be gained by subjecting DW to additional scans. Our former Neuro and PCP both agreed with my philosophy and how I wanted to manage my wife's treatment: AD is Incurable, it's progress is measured by the appearance of various behaviors and symptoms, all any MD can do is provide medication to make the various behaviors that present more manageable for the caregiver to cope with and lessen the risk or danger of the patent harming themselves. My primary concern has to make DW's daily existence as pleasant and pain free as possible. The measurement of the progression of brain atrophy may help you cope better, and there is nothing wrong with that, but that's all you can expect from additional scans.
We don no CT scans anymore. Lloyd can not lay still and if he has one, he needs to be sedated. Sedation just does him in. He cannot even walk so we don't do them. Every time he has injured himself, they want to do a CT scan. I refuse and they make me sign off on it. Big deal! They say he could be bleeding in his brain and die. That would be merciful. He should be so lucky. My goal is happy and pain-free and anything beyond that is pointless.
Thanks everyone for your input. My DH's first CT scan was performed on Christmas Eve, 2009, in response to his collapse at the family celebration that night. We weren't sure what had happened, but we were looking to rule out a stroke. The ER doc told me that there was brain atrophy. And then all the testing started --thyroid, B12 levels, neuropsych exam, etc. The neuro diagnosed mild cognitive impairment in April, 2010. DH had an MRI in June 2010 at the advice of the neuropsych who thought there was a possibility we were dealing with a psychiatric issue and not dementia. Then the third CT was done in Dec, 2010 when DH got lost one evening driving to the next town, collapsed at home and was hospitalized for more tests.
I don't necessarily consider my DH a textbook case by any means. Some days I still can't figure out what I'm dealing with. He was always a stubborn man and now even more so and I'm not always sure it's the dementia talking. I guess I'll see what the neuro says tomorrow.
Elaine, The words CT and MRI have been used but a thought came to mind.
You said that your Dx is not yet certain. I should mention that released just last year is a dye that will light up Amyloid plaques on a PET scan. It's use is still controversial and just this week there were guidelines issued concerning when the PET scan should be used. It can confirm the presence of the plaques but exactly how that confirms or refutes a Dx and who should receive the scan is what is being debated.
My DH has a family history of AD. We had the whole series of tests done early in 2010 when he was, I estimate, in stage 4. Now he is in stage 6 and like Marty, my goal is to make his life (and mine) as happy and pain free as possible. I won't let anyone do any more testing on him.
If you are unsure whether you are dealing with Alzheimer's, you could have the doctor order an AMYVID Pet scan. If it is negative, you will know for sure you are not dealing with Alzheimer's.
The scan is not covered by Medicare, so most likely not by private insurers either, but they have discounted it down to $1,200. (I know that's a lot of money, but looks good compared to the original $6,600 price tag). They also are available free through a clinical trial - if you happen to be near on of their centers andyou quailfy: http://clinicaltrials.gov/ct2/show/NCT01703702
I am pleading with my DH to get one- but, unfortunately, he refuses...
In many cases the scans are valuable to researchers, but in that case your spouse should be in a study and they should be of no cost to you.
L's last scan was 4 years ago (CAT, MRI, PET). There had been CAT scans since then but this was in the emergency room and they were looking for bleeding (blood thinner medication and hitting head with migraine) but no one was looking for signs of dementia in the latter cases.
Her neurologist brought up 2 months ago doing a high density MRI but that didn't get put into the next appointment. Either the neurologist decided against it or insurance wouldn't pay for it.
Most places that do scans will not do them until insurance is sorted out. Unfortuantely some do, insurance declines and someone gets a $6,000 bill.
Around October, Lloyd "escaped". One of the kids left the front door unlocked. In less than an hour he escaped, was found, taken by police to the ER, found by me, and brought home. Also in that hour, they managed to give him an EKG. Try to get that kind of service when you need it!!! I never did pay for that EKG. I told them as far as I was concerned, all they needed to do was check his feet (he was barefoot when he got out) and send him home. He was certainly in no position to approve any testing. He cannot even talk. Who knows how many tests they could have racked up if I had not found him quickly. He now has a woven "survivor" ID bracelet that has his name, address, my cell number and the word "Alzheimer's. Hopefully it will never happen again!
For Clare, no CAT/MRI/PET scans since diagnosis in 2009; just an annual free neuropsych eval, and that's only because we agreed that she would participate in an international study. Otherwise, I wouldn't even bring her for that annual eval because it only confirms what I already know. I don't need tests to confirm that Clare is decining year to year!
I hear ya, Acvann. I would much rather get through this one day at a time. I don't want to or have the energy to anticipate what is coming next on this journey.
My decision to stop any testing unless event driven, was because it made no sense to me to repeat tests just because a year had past, nor to do tests for things he could not or would not be able to cooperate with the treatment for. His inablility to coopoerate with the testing prodcedure itself was another factor. Testing only for treatment of an injury or physical illness--and we only needed urinalyses and bloodwork on occasion over these years.