My primary tool for dealing with nutrition and diet is a healthy dose of skepticism. We live in an age where science studies are conflicting and paid for with company interests. The information out there is conflicting. I follow the adage of: Trust thyself, know thyself. For the most part my body tells me what I can and cannot eat, through pressure changes within 1-2 hours of eating.
Body chemistry is incredibly complex, so I know what worked for me may or may not work for someone else.
-I use the Nutrition Data website to break down information on foods. It is definitely my go-to website: Nutrition Data.
Interestingly, if you are like me and need a high dose of anti-inflammatories to minimize the symptoms due to spinal pressure, ND has an IF rating system which basically will show you what foods will give you the best IF ratings. For example, garlic and ginger are high on the list. Google IF ratings and you can thumb through those and bookmark it. IF = Inflammatory ratings.
-Dr. Weil's Anti-Inflammatory Food Pyramid is also a good place to start. For a marker of overall health this will work well for a lot of people with spinal issues.
-I do recommend the Blue Zone Book as well. It's a National Geographic Based study that explored (from a non-objective viewpoint) what traits those who live in regions who lived to be 100 most often exhibit. The overview: a diet high in non-processed foods, much fruit and veg, moderate consistent exercise, and a good social structure. It varies as well, with some people preferring wine, some not. Some preferring dairy and pork, some completely vegan. So, information varies from region to region and makes it easier to look at a diet that fits your lifestyle better.
-I find the Nutrition Facts website helpful. There are a lot of interesting studies and info there. Much about fruits and vegetables, teas and coffees. Random scientific studies concerning food: Nuitrition Facts.
Tuesday, July 30, 2013
Monday, July 29, 2013
Personal: Spinal and Health Information
Posting in case this information is helpful to another ependymoma patient with a similar tumor.
Vitals:
My blood pressure, heart, organ function, nutrient counts, protein counts all seem to be normal at age 33. The exception is my Vitamin D is to the low range, which I am trying to remedy with supplementation. (Range of consistently done blood tests include: Full CMP (full blood counts) and CBC (glucose, kidney, liver functions, electrolytes, calcium, protein), thyroid, IRON and TIBC, Vitamin B12 and Vitamin D.)
My Thoraic and Lumbar MRI have been consistent before and after surgery/radiation. There does seem to be obvious damage specific to the radiation treatments:
The full MRI report:
One year following surgery, 6 months following radiation. Surgery relieved pressure on the spine and minimized many unpleasant side effects but not the loss of limb function. There was no resection from surgery, a biopsy only. Radiation has made pressure effects much worse than even preop. If I wasn't told I needed radiation by the entire Barrows board for better chance of survival, I would not risked it knowing how bad the side effects would be. According to surgeon cutting tumor out is not worth risk if can be contained with the radiation.
T-Spine: Vertebral body heights are preserved. Normal alignment. Marked fatty marrow change from T8 and below, consistent with radiation. T10-L1 laminoplasty redemonstrated. Marrow signal is otherwise normal. No significant degenerative changes.
Ventral epidural CSF collection from level of T3-T4 to level of T11 with posterior displacement and the draping of the cord is redemonstrated and not significantly changed in appeareance. Consistent with arachnoid cyst.
Stable appearance of heterogeneous t2 signal within the distal thoracic cord extending to the conus. Development of a tiny SVF intensity elliptical structure dorsally at the level of T11, measuring 4x9x23 mm in AP, transverse, and craniocaudal dimensions respectively. Difficult to ascertain whether is intrameduallary or extrameduallary.
No abnormal enhancement, however, did not enhance preoperatively.
L-Spine: Vertebral body heights are preserved. Normal alignment. Stable laminoplasty postsurgical changes extending from above to L1. Fatty post-radiation marrow changes from the L2. Stable heterogeneous, slightly expansile T2 signal abnormality within the conus. Stable mild ventral displacement of the nerve roots from L1-L3, likely related to a dorsal CSF loculation. No abnormal enhancement. Stable minor multilevel disc bulges, without significant spinal canal or neural foraminal stenosis at any level.
Vitals:
My blood pressure, heart, organ function, nutrient counts, protein counts all seem to be normal at age 33. The exception is my Vitamin D is to the low range, which I am trying to remedy with supplementation. (Range of consistently done blood tests include: Full CMP (full blood counts) and CBC (glucose, kidney, liver functions, electrolytes, calcium, protein), thyroid, IRON and TIBC, Vitamin B12 and Vitamin D.)
My Thoraic and Lumbar MRI have been consistent before and after surgery/radiation. There does seem to be obvious damage specific to the radiation treatments:
The full MRI report:
One year following surgery, 6 months following radiation. Surgery relieved pressure on the spine and minimized many unpleasant side effects but not the loss of limb function. There was no resection from surgery, a biopsy only. Radiation has made pressure effects much worse than even preop. If I wasn't told I needed radiation by the entire Barrows board for better chance of survival, I would not risked it knowing how bad the side effects would be. According to surgeon cutting tumor out is not worth risk if can be contained with the radiation.
T-Spine: Vertebral body heights are preserved. Normal alignment. Marked fatty marrow change from T8 and below, consistent with radiation. T10-L1 laminoplasty redemonstrated. Marrow signal is otherwise normal. No significant degenerative changes.
Ventral epidural CSF collection from level of T3-T4 to level of T11 with posterior displacement and the draping of the cord is redemonstrated and not significantly changed in appeareance. Consistent with arachnoid cyst.
Stable appearance of heterogeneous t2 signal within the distal thoracic cord extending to the conus. Development of a tiny SVF intensity elliptical structure dorsally at the level of T11, measuring 4x9x23 mm in AP, transverse, and craniocaudal dimensions respectively. Difficult to ascertain whether is intrameduallary or extrameduallary.
No abnormal enhancement, however, did not enhance preoperatively.
L-Spine: Vertebral body heights are preserved. Normal alignment. Stable laminoplasty postsurgical changes extending from above to L1. Fatty post-radiation marrow changes from the L2. Stable heterogeneous, slightly expansile T2 signal abnormality within the conus. Stable mild ventral displacement of the nerve roots from L1-L3, likely related to a dorsal CSF loculation. No abnormal enhancement. Stable minor multilevel disc bulges, without significant spinal canal or neural foraminal stenosis at any level.
Causes of Ependymoma
Video on Ependymoma, including causation from the CERN foundation: CERN Foundation Video.
Doctor on video states (concerning adult primary Ependymoma): "It tends not to be hereditary. No link to occupational exposure and other causitive agents, no link to smoking, or environmental pathogen."
However, as they state, with as few as 300 cases per year, there is still very little overall information regarding causation.
I think at this point with the information collected, it's probably too early to speculate. I have to say as someone with this issue, it's sort of horrifying not knowing what caused it. You ask yourself, is there something I can do to prevent regrowth? Or am I just going to have to deal with the circumstance. I think from a logical standpoint there aren't easy answers.
I've talked to other epedys who've had family members with varying neurological problems and there are neurological problems that run in my family as well. When I was 20, I had a botched epidural and spinal fluid leak that was in the region that the tumor grew from. As well as the region in the South that I grew up in being a high risk area in the country for brain tumors.
As far as the epidural information goes: I had preeclampsia during pregnancy, was suffering from extreme swelling from the condition. I went in to have a c-section, and anesthesiologist said it would be safe to have an epidural. Due to extreme body swelling, he could not find the spinal segments and chose to puncture and re-puncture between 3-6 times to try and get epidural to take. Resulted in a spinal fluid leak and numbness in the upper portion of my body as well (inability to breath) temporarily.
Also worth noting, area I grew up in is ranked highest in the U. S. for brain tumors.
Doctor on video states (concerning adult primary Ependymoma): "It tends not to be hereditary. No link to occupational exposure and other causitive agents, no link to smoking, or environmental pathogen."
However, as they state, with as few as 300 cases per year, there is still very little overall information regarding causation.
I think at this point with the information collected, it's probably too early to speculate. I have to say as someone with this issue, it's sort of horrifying not knowing what caused it. You ask yourself, is there something I can do to prevent regrowth? Or am I just going to have to deal with the circumstance. I think from a logical standpoint there aren't easy answers.
I've talked to other epedys who've had family members with varying neurological problems and there are neurological problems that run in my family as well. When I was 20, I had a botched epidural and spinal fluid leak that was in the region that the tumor grew from. As well as the region in the South that I grew up in being a high risk area in the country for brain tumors.
As far as the epidural information goes: I had preeclampsia during pregnancy, was suffering from extreme swelling from the condition. I went in to have a c-section, and anesthesiologist said it would be safe to have an epidural. Due to extreme body swelling, he could not find the spinal segments and chose to puncture and re-puncture between 3-6 times to try and get epidural to take. Resulted in a spinal fluid leak and numbness in the upper portion of my body as well (inability to breath) temporarily.
Also worth noting, area I grew up in is ranked highest in the U. S. for brain tumors.
CERN Foundation
A must-have website in the arsenal of those dealing with Ependymoma: The CERN Foundation
Saturday, July 27, 2013
Introduction
Hello. My name is Lavonia. I'm known on the internet for making art (despite being a bit of a recluse), so I'm used to putting a lot of personal information online. I also feel the need to share my personal story of ependymoma with others because I feel collaborative information can be so helpful for people with rare diseases. This blog is created with the purpose solely of sharing information about my intramedullary ependymoma. 300 out of 7 billion people are diagnosed with ependymoma each year, a rare form of brain/spinal tumor.
I live in Phoenix, which ranks high with the medical neurological care of the Barrow's Institute. I know even there I'm pretty alone in terms of others with the same condition. It can be frustrating, even with great doctors in finding answers and trying make the best of it.
I live in Phoenix, which ranks high with the medical neurological care of the Barrow's Institute. I know even there I'm pretty alone in terms of others with the same condition. It can be frustrating, even with great doctors in finding answers and trying make the best of it.
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