It's been a crazy, exhausting month so far. I've been to so many tests and appointments in the past few weeks, I can barely keep track. Also, we are moving. Our landlord let us know last month that they would be selling the house. The timing couldn't possibly be worse. Life is just a little bit overwhelming right now. I know we'll get through, but I can't wait until the day when this stage is behind us. Thanks so much to those who have been helping us out <3
So far, my test results are a mixed report. There is one diagnosis they were sure of. My head cold! Hahaha, I was dying, all of the head scans from this past week mentioned my sinus inflammation and pressure!! In very technical terms too, it was so funny. One report wrote out the specifics of my sinus troubles and then said, "recommended clinical correlation for acute sinusitis." At least they got that diagnosis right!!
Ok, for the real results. Like I said, it's a mixed report. There is strong evidence for a vascular malformation and strong evidence for a neoplasm/tumor. Which evidence is most accurate or most important? We're not sure. These reports have also raised the possibility of an inflammatory lesion. That's the gist of what we know right now. Basically, nothing. Sadly. There will be more tests to come.
For those who want details, here are the report findings...
CT Angiogram
Shows strong evidence of a vascular lesion, but its inconclusive.
The report says, "CT angiogram is suggestive of several linear traversing vascular structures...Given [this report, along with] the appearance on MRI, an atypical vascular malformation is favored, with surrounding venous congestion and gliosis (scarring). Less likely considerations could include neosplasm (tumor) or inflammatory lesions."
Basically the whole report is saying it sees strong evidence for a vascular lesion, but acknowledges that it could also be a neoplasm.
MR Spectroscopy & MRI
They did the MRI and Spectroscopy scans together, so they could look at them together. This report gave a few reasons in favor of a vascular lesion, and several reasons in favor of a neoplasm (tumor). It also suggested inflammatory lesions. Here are the points they gave, in technical terms and in plain English:
1. The MRI report says, "since the last MRI of Dec 2013 there has been an increase in the [size of the lesion] which now measures 3.2 x 1.9 x 2.8 compared to 2.4 x 1.6 x 2.5 on the 2013 scan. This change suggests an inflammatory or neoplastic [cancerous] process." That's pretty clear English, I think. As a comparison, in 2011 the largest measurements of my lesion were 1.7 and 1.3.
2. "The increase in high signal may be seen with a venous abnormality or or telangiectasia (vascular tangle) that may be secondary to venous obstruction, producing the surrounding edema (swelling) and ischemia. Basically, the increase in size could also be due to a venous obstruction, and a growing area of swelling and scarring in my brain. One doc explained that a vascular lesion could also be "stealing" oxygen from the surrounding healthy tissue in my brain, and that could be causing the increased swelling and scarring too.
3. The Spectroscopy scan measures chemical signatures in your brain, which gives clues about what is in there. In the area of my lesion, my spectroscopy scan shows, "slight elevation in choline and apparent elevation of lactate with stable NAA. This pattern is non specific and may be seen with inflammatory or neoplastic (cancerous) lesions." This kind of makes it sound like a vascular lesion is less likely. But again, the whole report goes back and forth.
4. "As suggested in the prior reports, the complex curvilinear pattern of these three enhancing lesions suggests a vascular lesion or tumor and ectasia (distension). So helpful. Vascular or Tumor. Good thing they brought this up.
5. "The spectroscopy pattern, as well as the recent increase in high signal raise the question of inflammatory or neoplastic process. Possibly inflammatory lesions include lymphomatoid granulomatosis or neurosarcoidosis. Possible neoplastic lesions include mid grade astrocytoma (WHO II-III) or unusual oligodendroglioma."
6. The report mentions that the enhancement hasn't grown. Just the lesion itself has grown. This is evidence in favor of a vascular lesion. If a tumor was growing, the enhancement should be growing too. Or at least it usually does.
7. The MRI shows "Two smaller, stable enhancing lesions in the left occipital and right frontal white matter." These are the smaller lesions we were looking for. Their presence makes a neoplasm more likely, but the fact that they are stable and not growing is good news. Also, they say it's possible these could be vascular anomalies too. (Again, all evidence points towards the two diagnoses. Not super helpful.) If the small lesions had been gone, it would have made us think of MS. The fact that they are still present and still enhancing means these lesions are not MS, and it also makes them an important piece to the puzzle.
We are still waiting on results from the thoracic and cervical spine MRIs. I actually cancelled the cervical spine MRI this week because I was exhausted from everything else. I will reschedule soon. Thoracic results are pending.
It's pretty frustrating to go to all this effort, and land right where we started....vascular lesion or tumor. Next steps were discussed with the neuromuscular specialist I saw this week. I will post all those details tomorrow. I hope. Soon.
Thanks everyone for your support and prayers. I have had some really unexpected and unusual bursts of energy this week (VERY helpful for the moving project!) and I feel like it must be a result of everyone's prayers. God is listening, thank you all so much <3
So far, my test results are a mixed report. There is one diagnosis they were sure of. My head cold! Hahaha, I was dying, all of the head scans from this past week mentioned my sinus inflammation and pressure!! In very technical terms too, it was so funny. One report wrote out the specifics of my sinus troubles and then said, "recommended clinical correlation for acute sinusitis." At least they got that diagnosis right!!
Ok, for the real results. Like I said, it's a mixed report. There is strong evidence for a vascular malformation and strong evidence for a neoplasm/tumor. Which evidence is most accurate or most important? We're not sure. These reports have also raised the possibility of an inflammatory lesion. That's the gist of what we know right now. Basically, nothing. Sadly. There will be more tests to come.
For those who want details, here are the report findings...
CT Angiogram
Shows strong evidence of a vascular lesion, but its inconclusive.
The report says, "CT angiogram is suggestive of several linear traversing vascular structures...Given [this report, along with] the appearance on MRI, an atypical vascular malformation is favored, with surrounding venous congestion and gliosis (scarring). Less likely considerations could include neosplasm (tumor) or inflammatory lesions."
Basically the whole report is saying it sees strong evidence for a vascular lesion, but acknowledges that it could also be a neoplasm.
MR Spectroscopy & MRI
They did the MRI and Spectroscopy scans together, so they could look at them together. This report gave a few reasons in favor of a vascular lesion, and several reasons in favor of a neoplasm (tumor). It also suggested inflammatory lesions. Here are the points they gave, in technical terms and in plain English:
1. The MRI report says, "since the last MRI of Dec 2013 there has been an increase in the [size of the lesion] which now measures 3.2 x 1.9 x 2.8 compared to 2.4 x 1.6 x 2.5 on the 2013 scan. This change suggests an inflammatory or neoplastic [cancerous] process." That's pretty clear English, I think. As a comparison, in 2011 the largest measurements of my lesion were 1.7 and 1.3.
2. "The increase in high signal may be seen with a venous abnormality or or telangiectasia (vascular tangle) that may be secondary to venous obstruction, producing the surrounding edema (swelling) and ischemia. Basically, the increase in size could also be due to a venous obstruction, and a growing area of swelling and scarring in my brain. One doc explained that a vascular lesion could also be "stealing" oxygen from the surrounding healthy tissue in my brain, and that could be causing the increased swelling and scarring too.
3. The Spectroscopy scan measures chemical signatures in your brain, which gives clues about what is in there. In the area of my lesion, my spectroscopy scan shows, "slight elevation in choline and apparent elevation of lactate with stable NAA. This pattern is non specific and may be seen with inflammatory or neoplastic (cancerous) lesions." This kind of makes it sound like a vascular lesion is less likely. But again, the whole report goes back and forth.
4. "As suggested in the prior reports, the complex curvilinear pattern of these three enhancing lesions suggests a vascular lesion or tumor and ectasia (distension). So helpful. Vascular or Tumor. Good thing they brought this up.
5. "The spectroscopy pattern, as well as the recent increase in high signal raise the question of inflammatory or neoplastic process. Possibly inflammatory lesions include lymphomatoid granulomatosis or neurosarcoidosis. Possible neoplastic lesions include mid grade astrocytoma (WHO II-III) or unusual oligodendroglioma."
6. The report mentions that the enhancement hasn't grown. Just the lesion itself has grown. This is evidence in favor of a vascular lesion. If a tumor was growing, the enhancement should be growing too. Or at least it usually does.
7. The MRI shows "Two smaller, stable enhancing lesions in the left occipital and right frontal white matter." These are the smaller lesions we were looking for. Their presence makes a neoplasm more likely, but the fact that they are stable and not growing is good news. Also, they say it's possible these could be vascular anomalies too. (Again, all evidence points towards the two diagnoses. Not super helpful.) If the small lesions had been gone, it would have made us think of MS. The fact that they are still present and still enhancing means these lesions are not MS, and it also makes them an important piece to the puzzle.
We are still waiting on results from the thoracic and cervical spine MRIs. I actually cancelled the cervical spine MRI this week because I was exhausted from everything else. I will reschedule soon. Thoracic results are pending.
It's pretty frustrating to go to all this effort, and land right where we started....vascular lesion or tumor. Next steps were discussed with the neuromuscular specialist I saw this week. I will post all those details tomorrow. I hope. Soon.
Thanks everyone for your support and prayers. I have had some really unexpected and unusual bursts of energy this week (VERY helpful for the moving project!) and I feel like it must be a result of everyone's prayers. God is listening, thank you all so much <3
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