23 May 2006
Tuesday, 11:15 PM
High-Level Journal Summary: Obtaining more medical records, which is never easy to accomplish because of volume. Here, lab results are provided from my 5/3/06 Perfusion MRI with Spectroscopy, verbatim.
This lab report is complex and difficult to understand. At the same time, having this level of detail can reveal unexpected things. Based on the data I received today, I am now wondering if I need to hop on the next train to NYU to have another MRI performed, simply because the spectroscopy analysis was "technically limited" on 5/3/06 and therefore "noncontributory."
While doctors and patients are all on the same team, centralized vigilance is absolutely critical. Ultimately, this responsibility belongs to patients and caregivers.
Countdowns:
1.) Day 9 of 28 in my 8th 5/23 Temodar chemotherapy cycle.
2.) Bi-monthly MRI at NIH is on 6/7/06. This will determine if my brain tumor is larger, smaller, or the same size.
Seizure Activity:
1.) Last Grand Mal Seizure was on 6/30/05.
2.) Last Simple Partial Seizure, or SPS, was 5 days ago. It lasted 2 minutes and required me to take my emergency drug, Ativan.
3.) I have now had 23 SPS's in the past 152 days (since 12/22/05). This is an average of 1 every 6.6 days.
Actual Journal: I received several medical reports in the mail today. To maintain copies of all medical records is a considerable task. This includes MRI's and all medical tests done. Some tests are readily available. Some are not offered unless you know to ask for them.
I consider anything with my name on them to be something I should have in my personal records, no matter what anyone says. So far, I have not gotten resistance when I make such a statement. It is simply a matter of due diligence to get all these things. Quite often, many phone calls and follow-ups are needed before such records are delivered.
When I visited NYU on 5/3/06, I got a Perfusion MRI with Spectroscopy. As I have mentioned before, this is an innovative technique that provides qualitative information about brain tumors. This cumulative data could eventually prove to be invaluable.
Today, I got the actual CD's from 5/3/06, as well as the written reports from 2 doctors who oversaw the MRI process. This information will then be fed to Dr. Patrick J. Kelly who will interpret all this input and offer his analysis. What I am sharing today is the Greek language that Dr. Kelly inherits when a Perfusion MRI with Spectroscopy is performed. From here, his medical insights will be offered, which are of particular value to me.
MRI data from 5/3/06
The following information is verbatim from the written report I received today:
Dear Doctor:
The following is a radiologic consultation on your patient:
MRI BRAIN PERF SPECTROSCOPY
Completed on: 3-MAY-2006
History: Lateral basal ganglia tumor.
Technique:
Axial FLAIR, T2 weighted and diffusion weighted images were obtained. Contrast enhanced sagittal and axial T1 weighted images were obtained. Dynamic T2* weighted susceptibility-weighted contrast enhancement MR perfusion imaging and proton MR spectroscopy were performed.
Comparison is made to study dated 2/14/2006.
Findings:
The patient is status post left frontal temporal craniotomy with associated calvarial and soft tissue changes. A surgical cavity subjacent to the craniotomy site is significant for partial resection of the anterior temporal lobe and insula. T2/FLAIR signal hyperintensity surrounding the surgical cavity, involving the mesial temporal lobe, inferior frontal operculum, external capsule, remaining subinsular white matter and insula, and extending superiorly to the frontal lobe white matter is unchanged. There is unchanged mild mass effect upon the left lateral basal ganglia and lateral ventricle. Linear and vascular enhancement within a surgical cavity is unchanged and likely representative of postoperative change.
The ventricular system is unchanged in size and configuration, there is no midline shift or transtentorial herniation. There are no areas of abnormal enhancement within the brain parenchyma. There are no areas of restricted diffusion to suggest acute infarction. The flow voids at the base of the brain and within the surgical cavity demonstrate normal course and contour. The intraorbital compartments, tympanomastoid cavities and paranasal sinuses appear free of disease.
MR perfusion imaging demonstrates a maximal rCBV of 1.3 when comparing FLAIR signal abnormality within the above mentioned regions with normal appearing contralateral white matter.
MR spectroscopy analysis was technically limited and noncontributory.
Impression:
Stable postsurgical examination with unchanged extent of involvement of low grade neoplasm.
My reactions
1.) I need to call NYU and reschedule a meeting with Dr. Kelly. We were unable to meet on 5/3/06 because he was called to surgery. I want to get his analysis based on this input.
2.) Do I need to go back to NYU to get this Perfusion MRI with Spectroscopy performed again? In reading this report, it says that "MR spectroscopy analysis was technically limited and noncontributory." I compare this section of the report with the one done on 2/14/06, and it looks as if there may have been some technical issue that prevented important data from being gathered. If am reading this correctly (which I think I am), then I am back on a train next week to NYC. I will take the first opening available for this test. I want that data! After all, this is quarterly data that could eventually prove invaluable.
3.) The amount of data that is gathered is eye-popping for someone not in the medical field. The brain is mapped and described in very specific ways, giving a common (and complex) language so that doctors can speak to one another. Impressive -- and somehow surprisingly reassuring.
Final thoughts
Because I insisted on getting these medical records, I now know that there are more action items on my plate regarding my last trip to NYC. At the very least, I want to get a final reading from Dr. Kelly based on input from 5/3/06. At the very most, I will need to travel to NYC again to get another Perfusion MRI with Spectroscopy -- which I will do without hesitation.
In the end, this is yet another lesson that patients and caregivers are the ultimate managers of any and all treatments. While we all need to work in cooperation with our medical teams, there are so many moving parts that some sort of centralized vigilance is mandatory.
