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  #21  
Old 02-18-2008, 06:25 PM
KAM KAM is offline
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Isn't is great, we have to pass the PET scan now, I'll second the prayer on a clear PET scan! I have such a large amount of scar tissue from my brain surgery, that is why my neurologist wanted it. It is a great machine when you figure what it can tell a doctor when they may not have been looking for those issues in the first place.
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  #22  
Old 02-18-2008, 07:07 PM
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I am interested in learning more about the metabolic side of the test. Other than cancer and such, what can it pick up on. How oxygen and blood are carried through the muscle?
If one area is deficient while another is rich in the enzymes?

Is this the one that is colorful, and can show when given a certain substance, the changes in the brain's uptake of that substance?
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  #23  
Old 02-18-2008, 07:16 PM
KAM KAM is offline
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How about this link: http://www.clevelandclinic.org/healt...sp?index=10123

"A PET scan can measure such vital functions as blood flow, oxygen use, and glucose metabolism, which helps doctors identify abnormal from normal functioning organs and tissues. The scan can also be used to evaluate the effectiveness of a patient’s treatment plan, allowing the course of care to be adjusted if necessary.

Currently, PET scans are most commonly used to detect cancer, heart problems (such as coronary artery disease and damage to the heart following a heart attack), brain disorders (including brain tumors, memory disorders, seizures) and other central nervous system disorders.

PET scan reveals the cellular level metabolic changes occurring in an organ or tissue. This is important and unique because disease processes often begin with functional changes at the cellular level. A PET scan can often detect these very early changes whereas a CT or MRI detect changes a little later—as the disease begins to cause changes in the structure of organs or tissues."

Last edited by KAM; 02-18-2008 at 07:27 PM. Reason: typo
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  #24  
Old 02-18-2008, 07:26 PM
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Thank you so much KAM. That is going in my file for our next neurologist visit.
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  #25  
Old 02-19-2008, 02:55 PM
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Well Ive have pet scan, mri, but a year after my surgery I went into status and was put into a coma for 5 days. I had a b-cell in my brain. Which turned out to be an infection. But they used one of those scans, that could watch it grow. Which one is that? It turn out, that it is still fluid is draining out on its own with a little help of some water pills. But what is that scan. That was at Harborview Med. Center.Teresa
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  #26  
Old 02-19-2008, 07:06 PM
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stilldancing -- a YEAR after surgery you went into status? OMG! It's fantastic that you're OK today.
I don't have any idea which scan helped the neuros help you but I'm very thankful that it worked.
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  #27  
Old 02-21-2008, 12:42 AM
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MRI PET without Contrast with Tracer - very expensive


MRI PET without Contrast with
Tracer is extremely expensive.
Very few Insurances will cover it.
It typically costs approximately
$9-11k to perform it. The scan
below is revealing a enlarged
Thalamus on the right side of
the brain - a hot spot, where
seizures are known to originate
from. The orange 4 markers there
are called "cross-hairs" and have
been placed there by a most likely
a Level 4 Brain Surgeon or Epilep-
tologist.

These highly advanced technologies
are usually found in Level 4 epileptologist-Centers,
Advanced Hospitals, and Research
Centers.

They are very different from the
Standard PET which KAM posted
below. Standard PET is sensitive.

I have had both Standard PET without
Contrast, Standard PET with Contrast,
and MRI PET without Contrast with
Tracer.

The MRI PET without Contrast with
Tracer is the most sensitive of them
all and the most clearly defined clarity
and provides the most accurate info
for the Surgeon and neurologist / epileptologist.

MRI PET without Contrast with Tracer
also comes in colors as well and not
just black and white.

I can assure you that this is very
time consuming having gone
through it.

And if you must know how do I
know all of this? That's my
image posted below. Honest!

I have more than 500 images.

Last edited by brain; 02-21-2008 at 12:58 AM. Reason: added an addendum
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  #28  
Old 02-21-2008, 12:54 AM
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FDG w/o Contrast w/Tracer




Here is another image, called:
FDG without Contrast with Tracer

Also extremely expensive, far more
expensive that the one below.

You have a Standard FDG and a
FDG with Contrast and then the
more costly as stated above, and
I won't even disclose the cost!

The cross hairs (orange markers)
were placed by the Level 4 Brain
Surgeon or Epileptologist, where
seizures are originating from.

They come in color and in B&W
and this one was performed in
May 2007.

So what are you seeing?

I actually had a seizure during
that process, the white glow is
actually the seizure! And was
informed of it and shown of it.
There are more than 600+ images!

This one here is a FULL BLOWN image:

On the BOTTOM END where the cross
hairs have been placed from Right to
Left:

RIGHT IMAGE: Thalamus on the Right Side

CENTER IMAGE: Pituitary Gland

LEFT IMAGE: Occipital Region on the
Right side

Likewise you only find these highly
advanced technologies are usually
found in Level 4 epileptologist-Centers,
Advanced Hospitals, and Research
Centers.

Last edited by brain; 02-21-2008 at 01:12 AM. Reason: added an addendum / changed image
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  #29  
Old 02-21-2008, 08:34 AM
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Unhappy


OMG!! Wow ...............
Thank you for showing us.

And..... and..... and....
well, you are so fortunate for getting to OWN as well as SEE photos of the stuff you are cursed with. (Nevermind being able to reduce that enormous stuff so it will fit in here)
I go to a great #4 hospital and I have complete faith in them but they sure don't want to show me anything and I'm too much of a coward to ask/insist.
I have pleaded to see an MRI and a huge page with 24-30 tiny "photos" is flashed on the screen for a minute or two and that's it. I'm too shy/cowardly to insist on better.
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  #30  
Old 02-21-2008, 11:02 AM
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Nancy why are you a coward? It makes it so much more understandable. Go to the lab where you got the MRI and ask for a copy. They should give you one. It might cost $5.00 but you should keep it safe in your possession. You can also ask for any CT scans that are done in ER, copies of blood work.

This is your right, and they are quite accomodating. You can only learn by asking questions.
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  #31  
Old 02-21-2008, 11:25 AM
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Exclamation You CAN get them ...


Originally Posted by RobinN View Post:
Nancy why are you a coward? It makes it so much more understandable. Go to the lab where you got the MRI and ask for a copy. They should give you one. It might cost $5.00 but you should keep it safe in your possession. You can also ask for any CT scans that are done in ER, copies of blood work.

This is your right, and they are quite accomodating. You can only learn by asking questions.
Actually Robin - You can ask for the
Patient Copies - and they come in CD
DISCS!



If you ask for it when it's performed,
there's no charge! So keep THAT in
mind if you ever get one performed!

NANCY:
There STILL may be hope, that you
might be able to obtain your CD's of
your scans - Patient Copies! Just sign
the release!


Edited to add:
As expensive as this is - YOU OUGHT to
have copies! My Doctors have been very
grateful that I have copies - because I've
been ripping them for them!

Last edited by brain; 02-21-2008 at 11:27 AM. Reason: added an addendum
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  #32  
Old 02-21-2008, 12:24 PM
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I have asked up to a month later and there was no charge, but I do think that is up to the lab involved. I was told it could cost around $5.00 so I was just giving her a heads up. I was charged $35 just for a letter from a neurologist to Rebecca's school, so I don't put it past anyone in the Biz to make $$$ off of us.

I should have said CD. That is what I was given as a copy.
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  #33  
Old 02-21-2008, 05:52 PM
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The last time I had an MRI - Nov. '07 - the neurosurgeon said all my past films were "in file" except "this" one, the most recent since my latest surgery - May, '07. He said that is the MRI that will be kept for comparison in the future....it's now the one that counts.

My next appointment for an MRI is April .... I'll be having them every 6 months for 2 years then once a year forever. MAYBE I'll be able to get some copies
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  #34  
Old 02-21-2008, 07:04 PM
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my neurologist says i need another eeg soon..... but because of cost i dont know... you know what ive noticed my neck doesnt twitch and pull when im taking anti-epileptic drugs i was having to have botox every three months talk about a money grabber and my neurologist actually seems bummed that i dont want botox lol why when the anti-epileptic drugs stop the movement and pulling the tegretol dosent seem to help like the keppra (blah) did though.... maybe because i just started it..... I told him about it and he just said its because the problem is deep with in your brain.... the bazelganglua (simple partial)

Last edited by angel; 02-21-2008 at 07:06 PM.
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  #35  
Old 02-21-2008, 11:01 PM
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Wow , that is so cool! Well what epileptologist center. Mine is University of Washingtion, Harborview Med they are all connected. My neurologist-oncologist came from Africa to see me at the U and my epileptologist is at Harborview epileptologist center.and research center.That is so cool!
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  #36  
Old 02-22-2008, 07:38 AM
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Stilldancing -- I "think" you were asking Kam or angel but I'll still brag about MY hospital..... I happily go to Barnes Jewish/Washington University (yes, I said Washington U too. lol) in St. Louis, MO.
The hospital is old ... it's not pretty .... it's crowded - packed crowded ... But, wow, it's on the top edge of CARE and new developments.
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  #37  
Old 02-22-2008, 08:15 PM
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Basal Ganglia


Originally Posted by angel View Post:
I told him about it and he just said its because the problem is deep with in your brain.... the bazelganglua (simple partial)
The Basal Ganglia is another area where
seizures can arise from. I have a problem
with that area too. My Basal Ganglia is
slightly enlarged a little bit.

But here's an image from Stanford
University of the Basal Ganglia of
the brain:


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  #38  
Old 02-22-2008, 08:34 PM
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That picture is amazing. I went to Harborview today. Got another appt. in a month. Im tired. They took me off topamax. Yea. Except for the headaches I get. It was a fun experience and Alex was great the whole time. Sorry to kinda change the subject. The great doc and epileptologist center. I feel so good when I come home.
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  #39  
Old 04-22-2014, 07:53 PM
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Hi Kam, thanks for the info on PET scans. I would really like one done. I have had several MRI's and they have all come back abnormal stating that there are "lesions" (don't think I spelled that right - spots) like blurry spots about 2 or 3 of them. however, because I have ridden horses most of my life and have taken my share of "spills" and I have migrains they are saying thats what these lesions are. I am not convinced. I have tonic clonic, complex partial's and simple partial seizures. and these "lesions" I would like definate answers.
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  #40  
Old 04-23-2014, 04:20 PM
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welcome
unfortunately mri's can come back normal even when there is a lesion (and if it states 'lesion,' it's a lesion, which also embraces the possibility of a tumor, but one step at a time right). i had many mri's before the lesion was found, one that had developed pre-birth (cortical dysplasia).
the radiologist who found it (she was the beginning of saving my life) first named it as a 'mild mass' until further testing. proves that whether it's referred to as a spot, mass, or simply abnormality, there's a high likelihood that it's a lesion. once found my e name changed to 'lesional epilepsy,' go figure.
with having all the seizures you do i assume you had an epilepsy diagnosis, so that baffles me why they're saying you simply have lesions from migraines. i would request further testing, including a different set of 'slices' on the next mri. reason for this: a new radiologist did a set never done before, and found the lesion right away. i found the silver lining that if something was there we could move forward, but was truly PISSED that so many others had missed it.
when it was found i was 32 years old, the sucker was pretty old

when not convinced, push them and don't take a no until they figure it out. as we say on here often we're our own advocates, there really is no other way. best of luck and keep us posted
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