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PET scan vs Spinal Tap
Barbdavid
Posted: Tuesday, August 22, 2017 6:34 PM
Joined: 8/3/2017
Posts: 10


Good afternoon...

My OH had a PET scan done which I thought would give us all the information we would need to find out what is going on with him.  Dr called and stated the test was inconclusive and wants to do a spinal tap.  Has anyone had a PET scan done that they still tell you they can't rule AD?


Mimi S.
Posted: Tuesday, August 22, 2017 6:48 PM
Joined: 11/29/2011
Posts: 5663


Welcome to our world Barbdavid.  We're so glad you found us.

 

On one of the boards recently was information about the spinal tap was information about the spinal tap that I had not known. Can't remember what it was.

 

The Spinal tap can be used to diagnose dementia long before symptoms show.  Might that be the case?  Ask.
Barbdavid
Posted: Tuesday, August 22, 2017 8:08 PM
Joined: 8/3/2017
Posts: 10


Thank you...  I will definitely look..  I guess I just read to much into the PET Scan and thought it would give the same results as to either a negative or positive for AD.  Now the Dr said that is not the case and we now need to have a Spinal Tap...  he is only 53 and is having quite a lot of cognitive issues but then there are days where he seems so lucid.  I guess with all the tests EEG, MRI and Cognitive test that were all abnormal and then the Dr ordered the PET scan I completely thought we would have some kind of answers rather than now we need to do a spinal tap.  Just hate to put him through anything he doesn't really have to do.
catia712
Posted: Thursday, August 24, 2017 12:25 AM
Joined: 8/20/2017
Posts: 6


Hi Barbdavid, I'm the caregiver for my wife of 53 all starting at age 49; we had no diagnosis as her Doctor did not do the right tests to rule out AD 4 years ago even after second opinion at Stanford. We moved to LA feeling hopeful after my cousin knew of a great Doctor whom we now seen once. We are convinced she is the one who genuinely cares to get to the bottom of this.My wife warmed up to her immediatly and so did I" she took all all the necessary personal time & to make us feel truly cared for" So very impressed" My wife is far too young for this and thank God we are believers as we would be know where fast without this peace & strength.

We are told only Medicare pays for a PET Scan; and we may have to go to the Spinal-Tap anyway, though her doc says she qualifies for early Medicare just with her condition.

Next appointment Oct. 6th we'll see how goes, this is far the most challenging thing ever in our 25 years of marrige.

 
God Bless & Take Care,
Ron&Dawn 

 


steved64
Posted: Thursday, August 24, 2017 6:30 PM
Joined: 6/2/2017
Posts: 11


My DW was recently diagnosed at 53 with EOAD.  My understanding is that most doctors will search thoroughly for numerous other possible causes to rule out AD before ending up there.  For many it is a long search.  In my wife's case she first had a neuropsych exam to determine if it her problems were psychological, suspected to be depression (she has been on prozac for 12+ years).  The result from that was 'below expectations for age/education' including deficit of both memory and executive functions.  Next was MRI which showed significant atrophy.  Next was PET scan which showed low glucose uptake in affected areas - confirming brain metabolism not working right.  PET is often used to validate MRI results and can avoid a false diagnosis or confirm a positive one.  We got the MRI/PET results together and that was the real shock.  I will never forget that office visit.  Last test was a spinal tap looking for possible viral infection that could have been attacking nervous system including brain, results negative.  All this took over 6 months between insurance approvals and preferred provider availability.

Not everyone has a clear result right away.  We asked how long this might have been progressing and how much time is left.  Neurologist said it would be impossible to predict future after one round of testing.  They would monitor over time, repeat some of the tests that can make a quantitative measurement and determine a rate of change - at intervals of 6-12 months.  From this they might have some estimate.  But everyone is different, advances at different rates, can accelerate without warning or reach a plateau and stabilize for long times.

At this point I accept she is in early stages and not going to get better, but also not changing rapidly.  I have seen the slow decline for a couple of years already.  I try to remain positive that we are both otherwise physically fit and still enjoy quality of life even if she is occasionally forgetful or confused.  I don't know how long that will last, want to make the most of it one day at a time.

Hopefully you will get some clarity soon.


catia712
Posted: Monday, September 4, 2017 2:56 AM
Joined: 8/20/2017
Posts: 6


Hi steved64, Thanks very much for your kind reply, Everyone always ask's what stage she is at" How does one know? as reading of your wife's case being at the very beginning, we started 4 years ago I feel like for us" every year must be a new stage as this seems so rapid to me...In my wife's case she has been banned from any MRI's as she has a Metal Aneurysm Clip from 20+ years ago. wonder if we can even get a final diagnosis of EOAD? How were you able to get Insurance to pay for a PET Scan as only Medicare will pay for this" So I'm being told? I'm strong only from my faith but could absolutely be ready to collapse at any given moment.Everyone say's your great and your strong" you can do this...Though we also have no family support near by, which is doubly hard" My wife's Incontinence is out of control as twice within a 4 hour period she's had an emergency needing showers.My wife is also very stubborn as she does not want any stranger/caregivers in the house" we are trying to hold our own as long as we can.  People I've worked with do not want to be your friend, as they must be so awkward and uncomfortable. I'm trying to maintain some healthy practices for myself to guard against ugly negative things that I've read about. I'm concerned how this may affect getting future employment; and weather I should remain quiet, as my boss thinks that my wife just had a little stroke; as how it started out. My wife and I still share a lot of little long term memory things that are golden! But I find myself more and more nodding my head and pacifying her broken speech and expression that I'm understanding her. What else can one do" She surely would not get any benefit from me making her feel bad.I'm hearing that AD has been increasing at a scary rate now. Sure would like to know what could be in our Air,Food or Water that could be contributing to this outbreak. My wife's next appointment should be around October 6th in which we will get more direction and answers. Feel I should be doing so much more. Shouldn't I be applying for Early Medicare? Sorry for all he rambling on...just a bit nervous here of what the future holds.. Kind Regards,


ndhme
Posted: Monday, September 4, 2017 10:14 AM
Joined: 5/31/2015
Posts: 984


When PET scans are inconclusive, Dr's will order the spinal tap to look for the proteins that identify ALZ in the spinal fluid.  Ask if the tap will be a guided one...they use (slipped my mind) like ultrasound or sonargram so the Dr can see directly where the needle is being placed in the spine...helps ensure a successful fluid draw. My DH had a tap with no side or after affects.

As to only Medicare paying for a PET scan...that is false...our personal health insurance approved and covered the cost without question (this was prior to his eligibility for Medicare at age 55)  So always check what your health insurance covers.

Early Medicare:  once you apply for social security disability and are approved, the start date of Medicare is 2 yrs after the approved effective date (or age 65, which ever comes first).  The approval letter will identify that if I remember correctly.  With a diagnosis of ALZ (or any progressive dementia) the application should be fast tracked through the system...make sure to include a copy of testing and diagnosis as documented support.


catia712
Posted: Wednesday, September 13, 2017 1:57 AM
Joined: 8/20/2017
Posts: 6


Hi ndhme, Just received word today that our insurance will cover the PET scan;

Is there anyway to make the PET scan more conclusive? my wife is very skidish on any procedures...and before we schedule any future spinal-tap we will for sure request this tap to be a guided one.. Looks like since we are now getting SS Disability my DW will get Medicare but I don't understand why she has to wait 2 years, I think I read on SS website something too that says it's automatic enrollment after getting SSD.

Thank You, for the good advise" 


BadMoonRising
Posted: Wednesday, September 13, 2017 8:22 PM
Joined: 4/22/2017
Posts: 39


Hi Catia712,

Re: Medicare Entitlement. In general, if a claimant is entitled to disability benefits there is a 5 month waiting period before disability benefits are issued. Following the 5 month period, there is another waiting period of 24 months during which time the claimant is entitled to disability benefits.

Five months after the onset date + 24 months of entitlement to disability benefits = 29 months total from date of onset to eligibility for Medicare. It is true that your wife will be automatically enrolled in Medicare Part A and Part B. If she wants to decline the Part B she can opt out. Very few people opt out.


catia712
Posted: Friday, September 15, 2017 1:31 AM
Joined: 8/20/2017
Posts: 6


Hi BadMoonRising, No only my wife of beginning age of 49 has her doctor convinced it's EOAD not me. "Thank God" and your words from your experience were far different than ours; from the day we created a SSD login with online application it took 8 months to start receiving a payment from SSD, none of the 24 month wait and then some stuff.....just so you know' her Doctor also say's from her 25 years working with Alzheimer's patients that my wife is eligible immediately with her condition.
Thank you for the advise on Part A-B. will have to look into all this.
Also my CPA say's there is absolutely no help with tax breaks for our family as we are our own caregiver; only people that spend hundreds of thousands of dollars can get any relief and write this off. As there is a Min.Cap.Well at least one of her school loans is willing to excuse the balance from her condition.
 Kind Regards,
 
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