After 8+ years of dealing with some nerve pain of varying degrees, I've decided to cave and go to meds for the pain. The severity of pain has quadrupled since having radiation. I'm at the point, I'm losing muscle mass from sheer inability to stand for the pain. I'm not sure why or what caused the severity of the pain, symptom set is similar to my normal nerve conditions pre-radiation, just magnified.
I'm on 50mg tramadol at night and during the day, as well as 1800 mg ibuprofen. Will see how the med changes work.
The tramadol has been nice. It stops the nerve signal from getting through for the all-over pain. However, my quadracep pain is still present. It's better though, as I don't have the all over hit by a bus feeling while on it. I'm going to work on managing this while I continue to try to find studies on radiation or cysts or whatever has caused the pain magnification.
For now, I'm doing well on the med, however the break periods while not on the med is tough. The anti-inflammatories at this point may be giving me more nerve sensations as the nerves heal. Right now I'm not certain.
I'll see how it works for me and try to report back. Best wishes.
Friday, August 16, 2013
Thursday, August 15, 2013
Further Update on Causes of Ependymoma
A fellow ependymoma survivor sent me this: "SCTA conference was in Seattle a couple of years ago, Dr. Wise Young was a speaker. He's an authority on spinal cord injuries of all types, and he speculated that ependymomas are usually caused by earlier trauma to the spinal cord." CERN also speculates the tumor is not due to pathogens, environmental factors, or genetics.
It means the most likely cause of the spinal tumor I have began from a doctor's error. The anesthesiologist that damaged my spinal cord in 2000 during a routine epidural is likely what caused the progression. The tumor grew out of the exact spot that the spine was punctured. I sustained spinal fluid leak as well and had headaches for 3-6 months post-epidural.
As few cases that pop up with this issue, I doubt I'll ever know for certain what happened in my lifetime, but I definitely have my suspicions.
It means the most likely cause of the spinal tumor I have began from a doctor's error. The anesthesiologist that damaged my spinal cord in 2000 during a routine epidural is likely what caused the progression. The tumor grew out of the exact spot that the spine was punctured. I sustained spinal fluid leak as well and had headaches for 3-6 months post-epidural.
As few cases that pop up with this issue, I doubt I'll ever know for certain what happened in my lifetime, but I definitely have my suspicions.
Wednesday, August 14, 2013
Tuesday, August 13, 2013
Learning to Love Your Style
So, in facing this tumor, losing my leg function (amongst other things) was bad enough. It's losing the little things that can be so difficult. Why is it that the sexiest pair of shoes you can find always only comes in stiletto?
I'm sorry, I'm not giving up on personal style just because I'm handicapped. However, I've had to evolve a lot to make it work. Truthfully, I'm still learning. Half of the clothes and shoes I had in my closet I can no longer wear due to issues with the no legs thing. So I really had to dig deep stylistically.
If you are clueless when it comes to style, this info will help. It's not the easiest stuff to figure out, so you may need some time to devote to working through it to find out what clothes will work well for you.
Determining Style:
-Step 1: Determine whether you have warm or cool skin tone: Warm or Cool?
(If you look best in silver you are cool, look best in gold you are warm, and look best in either you are neutral).
-Step 2: Determine your personal Color Palette: Color Palettes: Winter, Summer, Fall, and Spring
I think it's worth noting, if you color you hair, color palette is very important. If you are a cool for example and have warm highlights put into your hair it's going to look off.
-Step 3: Determine personality type. There are a lot of different tests for this, some rely on less than scientific means, but it's a generalization.
Expressing your Truth Personality Types or DYT: 1, 2, 3, 4
(What if you color palettes and your personality clash? For example, I'm a Cool Winter and I hate saturated (bright) color. I prefer soft muted tones that are typical of most 2 personalities. So I dress to the Summer Cool as it's fits with my personality. I do look fabulous in red, but it's just not me.)
-Step 4: The ins and outs of fashion: Basic fabrics and styles. -Chic Fashionista: Fashion basics and your best colors. Kibbes style system. Seasonal Color Forums: Thorough but definitely a lot of info and not easy to sort.
Also, regarding general fit and tips and tricks for ladies of all shapes and sizes, please refer to this pinterest board: Style Guide.
In the end, go with your instincts. It's all about who you are. The whole point of this post is to help you find a guideline for fashion if you need one. If you are comfortable with what you have, why change it?
Here's how I used the guide system:
I'm a cool skin tone. I look good in silver and have pink undertones. If I were a classic style person loving bright colors (sapphires, rubies, emeralds) and bold patterns, that would be pretty easy to shop for. However, I've got a romantic body type (lots of curves), a 2/4 personality type (romantic and intelligent/melancholy). So, I hate bright colors on me, or pretty much any saturated color. So I revert to more of a summer cool palette with soft grays, purples, cool soft browns, blues, or black or white. You can see samples on my Pinterest board: here.
I do like classic line though, so I mix soft fabric with classic lines, like a sleek jacket. For me, though it hinges on that neutral color. I tried to work my cool winter palette in for a long time. Bright colors. It's not me, so I opt for the softer colors. It's a matter of balance, finding who you are and then finding the clothes that work.
I do recommend Pinterest. If you can find Polyvore swatches you like, you can find the actual clothes. I find that just going to a store doesn't help me, I never can find anything I like and I feel too picky. Searching DYT 1, 2, 3, 4 might be useful. Depending on your personality profile.
Special Needs:
Blowfish shoes. Flat! beautiful shoes are hard to come by. Not all shoes are flat, but they usually have a couple of pairs of great flats that are super sexy. If you have trouble walking or just need to look chic in a wheelchair, this will do.
Maidenform. Underwear that is sexy, soft and comfortable. I prefer the soft microfiber boyshort. Their bras are wonderful, too.
Gillian O'Malley Sleepwear. I had to convert to gowns, because I have a tendency to fall over in the middle of the night. Pants were too much trouble! They have some sexier racerback gowns that are nice for sleepwear if you can no tolerate pants but can't stand the thought of a grandma type gown.
Happy styling.
I'm sorry, I'm not giving up on personal style just because I'm handicapped. However, I've had to evolve a lot to make it work. Truthfully, I'm still learning. Half of the clothes and shoes I had in my closet I can no longer wear due to issues with the no legs thing. So I really had to dig deep stylistically.
If you are clueless when it comes to style, this info will help. It's not the easiest stuff to figure out, so you may need some time to devote to working through it to find out what clothes will work well for you.
Determining Style:
-Step 1: Determine whether you have warm or cool skin tone: Warm or Cool?
(If you look best in silver you are cool, look best in gold you are warm, and look best in either you are neutral).
-Step 2: Determine your personal Color Palette: Color Palettes: Winter, Summer, Fall, and Spring
I think it's worth noting, if you color you hair, color palette is very important. If you are a cool for example and have warm highlights put into your hair it's going to look off.
-Step 3: Determine personality type. There are a lot of different tests for this, some rely on less than scientific means, but it's a generalization.
Expressing your Truth Personality Types or DYT: 1, 2, 3, 4
(What if you color palettes and your personality clash? For example, I'm a Cool Winter and I hate saturated (bright) color. I prefer soft muted tones that are typical of most 2 personalities. So I dress to the Summer Cool as it's fits with my personality. I do look fabulous in red, but it's just not me.)
-Step 4: The ins and outs of fashion: Basic fabrics and styles. -Chic Fashionista: Fashion basics and your best colors. Kibbes style system. Seasonal Color Forums: Thorough but definitely a lot of info and not easy to sort.
Also, regarding general fit and tips and tricks for ladies of all shapes and sizes, please refer to this pinterest board: Style Guide.
In the end, go with your instincts. It's all about who you are. The whole point of this post is to help you find a guideline for fashion if you need one. If you are comfortable with what you have, why change it?
Here's how I used the guide system:
I'm a cool skin tone. I look good in silver and have pink undertones. If I were a classic style person loving bright colors (sapphires, rubies, emeralds) and bold patterns, that would be pretty easy to shop for. However, I've got a romantic body type (lots of curves), a 2/4 personality type (romantic and intelligent/melancholy). So, I hate bright colors on me, or pretty much any saturated color. So I revert to more of a summer cool palette with soft grays, purples, cool soft browns, blues, or black or white. You can see samples on my Pinterest board: here.
I do like classic line though, so I mix soft fabric with classic lines, like a sleek jacket. For me, though it hinges on that neutral color. I tried to work my cool winter palette in for a long time. Bright colors. It's not me, so I opt for the softer colors. It's a matter of balance, finding who you are and then finding the clothes that work.
I do recommend Pinterest. If you can find Polyvore swatches you like, you can find the actual clothes. I find that just going to a store doesn't help me, I never can find anything I like and I feel too picky. Searching DYT 1, 2, 3, 4 might be useful. Depending on your personality profile.
Special Needs:
Blowfish shoes. Flat! beautiful shoes are hard to come by. Not all shoes are flat, but they usually have a couple of pairs of great flats that are super sexy. If you have trouble walking or just need to look chic in a wheelchair, this will do.
Maidenform. Underwear that is sexy, soft and comfortable. I prefer the soft microfiber boyshort. Their bras are wonderful, too.
Gillian O'Malley Sleepwear. I had to convert to gowns, because I have a tendency to fall over in the middle of the night. Pants were too much trouble! They have some sexier racerback gowns that are nice for sleepwear if you can no tolerate pants but can't stand the thought of a grandma type gown.
Happy styling.
Monday, August 12, 2013
Cosmetic, Beauty, and Products
Finding out you have a tumor is a nightmare concerning consumer products. You suddenly start to query everything. Is this product good for me? Is that one? If you are careful about what you put into your body when you eat, you should probably be careful about what you put on it. Skin is quite permeable or things absorb into it easily.
All people should be concerned about products. There is no regulation in this field, they are allowed to put dangerous chemicals into products and it is buyer beware.
This is one of my favorite product search guides: GoodGuide.
Also for cosmetics: EWG: Skindeep.
Personally here are some products I've found to be completely or at least fairly safe that are in my buy list: Burt's Bees, Tarte Cosmetics, Pacifica perfumes, Jane Iredale (great liquid eyeliner), Kiss my Face, Hugo, Giovanni. Sally Hansen for nails.
Natural products like coconut oil, extra virgin olive oil, lemon, etc. can go a long way as well. The Free People Blog has some interesting d.i.y. cosmetic options.
If you have concerns with these products, please just leave a comment. Using products is a work in progress, constantly changing. I do have to say, I've changed everything I use from deodorant to shampoo. There are some good products out there.
All people should be concerned about products. There is no regulation in this field, they are allowed to put dangerous chemicals into products and it is buyer beware.
This is one of my favorite product search guides: GoodGuide.
Also for cosmetics: EWG: Skindeep.
Personally here are some products I've found to be completely or at least fairly safe that are in my buy list: Burt's Bees, Tarte Cosmetics, Pacifica perfumes, Jane Iredale (great liquid eyeliner), Kiss my Face, Hugo, Giovanni. Sally Hansen for nails.
Natural products like coconut oil, extra virgin olive oil, lemon, etc. can go a long way as well. The Free People Blog has some interesting d.i.y. cosmetic options.
If you have concerns with these products, please just leave a comment. Using products is a work in progress, constantly changing. I do have to say, I've changed everything I use from deodorant to shampoo. There are some good products out there.
Thursday, August 1, 2013
Food Preparation: Personal Journey
The below information is how I survive from day to day. I know for others with ependymoma or even inflammatory diseases things may be different, but the more information that's out there regarding how people are making it, the better.
The Cheat Sheet:
I stick with things that I can finish making or prepping in less than 15 minutes because of my legs. Sometimes I'll work on things throughout the day. Getting one thing started and then coming back to it. I avoid recipes that require me to stand at the stove for long periods of time without a break. For me it takes a budget of 40-60 dollars a week in food. I buy local when I can and seasonal.
These are food ideas meant to save you time but still eat healthy. My time on my feet has to be utilized well, so I work on getting the best I can as quickly as I can.
-Fruit and nuts on hand. Apples and oranges that are already washed, container of nuts where I sit and reach easily.
-Sweet potatoes. 2-3 at a time, cooked and put in foil.
-Frozen fruits. If I run out of fresh fruit, I usually have a bag of fruit in the freezer. It's my emergency backup.
-Easy Salad components. Spinach/romaine, olives, olive oil, fruits, onions, lemon or balsamic, cucumbers, nuts, etc.
-For full vegans: Spices. As many as possible especially if you go vegan. Loosing fat and protein components make it much harder to make things tasty. Also, avocado and Extra Virgin Olive Oil.
-Tofu/Veggies. In case I'm running short on protein. It'll store a couple weeks and can be mixed with one of those precut veggies from the freezer aisle.
-Extra virgin olive oil. I use it for salads and cooking. Keeping the heat medium to low, usually for steaming.
-Flaxseed (ground) is another protein option. Stick it in a blender with frozen strawberries, a little soymilk and voila.
-Lentils are a good bean option. They don't have to be presoaked and cook in about 30 minutes. Otherwise, the frozen beans tend to be an easier option than presoaking fresh beans.
-Mornings: Fresh fruits. Blueberries, blackberries, strawberries. Whatever can be shoved into a bowl and eaten without stress. I also have a cup of coffee with soymilk. My fiance helps with both breakfast and coffee. My stiffness is worse in the morning, so I have to get some ibuprofen and fruit down to function or I wouldn't get out of bed at all.
-Lunch: I usually have something pre-prepared. Again, fairly stiff at lunch time so I manage to pull off a salad or sweet potatoes or leftovers.
-Afternoon: Fruit, green drinks, green tea. Spend more time doing physical things on my feet during this time.
-Dinner: This is usually when I cook. I cook enough for leftovers and plan 2 days in advance.
-Speaking of stiffness and pain. Fruits and vegetables contain natural painkillers. Another important reason to eat them, even aside from the fact they are protective from cancer, tumors, disease and nutrient deficiency.
The Cheat Sheet:
I stick with things that I can finish making or prepping in less than 15 minutes because of my legs. Sometimes I'll work on things throughout the day. Getting one thing started and then coming back to it. I avoid recipes that require me to stand at the stove for long periods of time without a break. For me it takes a budget of 40-60 dollars a week in food. I buy local when I can and seasonal.
These are food ideas meant to save you time but still eat healthy. My time on my feet has to be utilized well, so I work on getting the best I can as quickly as I can.
-Fruit and nuts on hand. Apples and oranges that are already washed, container of nuts where I sit and reach easily.
-Sweet potatoes. 2-3 at a time, cooked and put in foil.
-Frozen fruits. If I run out of fresh fruit, I usually have a bag of fruit in the freezer. It's my emergency backup.
-Easy Salad components. Spinach/romaine, olives, olive oil, fruits, onions, lemon or balsamic, cucumbers, nuts, etc.
-For full vegans: Spices. As many as possible especially if you go vegan. Loosing fat and protein components make it much harder to make things tasty. Also, avocado and Extra Virgin Olive Oil.
-Tofu/Veggies. In case I'm running short on protein. It'll store a couple weeks and can be mixed with one of those precut veggies from the freezer aisle.
-Extra virgin olive oil. I use it for salads and cooking. Keeping the heat medium to low, usually for steaming.
-Flaxseed (ground) is another protein option. Stick it in a blender with frozen strawberries, a little soymilk and voila.
-Lentils are a good bean option. They don't have to be presoaked and cook in about 30 minutes. Otherwise, the frozen beans tend to be an easier option than presoaking fresh beans.
-Have a little more energy? Make a green drink in a juicer. Juicers do require a bit more cleanup. I do a kale, cucumber, ginger, green apple drink on occassion. When I need to really power through some greens. The green apple cuts the grassy taste, but green drinks might not be for those with weak stomachs.
-Green tea. Hot and cold. Though I like a cup of hot tea when my muscles are achy. The tea always makes me feel better. Couldn't live without a tea infuser cup -> Tea Tumbler.
I'm far to wobbly to bring hot tea across the house without something spill proof.
-Wine. Red wine will help inflammation in moderation. Moderation is key, more than 2 servings can have the opposite effect and spike the inflammatory process. They also make a spill proof wine glass -> Wine Tumbler
-Wine. Red wine will help inflammation in moderation. Moderation is key, more than 2 servings can have the opposite effect and spike the inflammatory process. They also make a spill proof wine glass -> Wine Tumbler
-Dinner basics: Soups such as seafood soups or veggie soups. Roasted vegetables. Stir frys.
Once I week I try to cook something nice that'll last a day or two. I found this recipe for Butternut squash soup. This week I went to the farmer's market and grabbed two butternut squash, fresh cilantro, fresh garlic, avocado. I have both canned and fresh black beans, but I'm just going to use the canned. I'm going to make my own veggie stock for the soup and work on that today. Each week I try to do something different. Some of my recipes: Personal Recipes.
Cooking Supples:
Must haves:
-A stainless steel wok-type pot. I have a rounded large pot that's good for stir frys and soups and most everything in between. Pretty much the only pot I use.
-Cookie sheet (for roasting vegetables and sweet potatoes).
-Aluminum foil (easy clean up and storage of roasted items).
-Knife set
-Cutting board and collapsible colander
-Some storage items
-Good mixing bowls
Nice to haves:
-Juicer
-Blender
-Rice cooker
-Immersion blender
-Fruit bowl
-Apple corer
-Mornings: Fresh fruits. Blueberries, blackberries, strawberries. Whatever can be shoved into a bowl and eaten without stress. I also have a cup of coffee with soymilk. My fiance helps with both breakfast and coffee. My stiffness is worse in the morning, so I have to get some ibuprofen and fruit down to function or I wouldn't get out of bed at all.
-Lunch: I usually have something pre-prepared. Again, fairly stiff at lunch time so I manage to pull off a salad or sweet potatoes or leftovers.
-Afternoon: Fruit, green drinks, green tea. Spend more time doing physical things on my feet during this time.
-Dinner: This is usually when I cook. I cook enough for leftovers and plan 2 days in advance.
-Speaking of stiffness and pain. Fruits and vegetables contain natural painkillers. Another important reason to eat them, even aside from the fact they are protective from cancer, tumors, disease and nutrient deficiency.
Food and Nutrition: Personal Journey
For me, the tumor and added pressure from fluids on the spine are compressing the nerves that run my legs, gluts, intestines and bladder. Any deviation from a very strict diet causes inflammation that puts pressure on those things and causes havoc.
Most epys I've met do not have to adhere to as strict a diet as I, but mine is a combination of research and trial and error. Due to the added bladder pressure from radiation, I have a physical indicator of what causes added stress and pressure and what does not.
This is primarily an inflammation-based diet, which according to current nutritionists is responsible for healthy diet in people in general. Meaning to control heart disease, diabetes, etc.
-Fresh food is best.
-Meats should be from the best sources you can get them from. This takes a little research. For example Alaskan salmon is much better than the Atlantic salmon. Most restaurants do not serve Alaskan. You really have to learn what you are eating with meats.
-Natural canned food is better than processed food. Processed foods should be eliminated completely.
-If you choose to go vegan, be sure to supplement B12. Not getting B12 can cause permanent damage to your body. Occasional zinc supplementation might be good as well.
Despite concerns about a vegan diet, I do not have trouble maintaining protein, calcium or other levels by just eating fresh veg, nuts and a little soy.
Before radiation, with the pressure less than it is now I could eat things like small amounts of cheese and small amounts of fish, etc. Now that pretty much causes a noticeable reaction, so I limit them.
Just remember, fresh is best. Know your food sources, where your food is coming from and it's quality.
My Diet Basics:
1. Fruits, vegetables, nuts, green tea. Both cooked and not cooked. Adding garlic and ginger to dishes will help for inflammation. You can both cold brew and hot brew green and white teas.
Fresh is key and these comprise most of my diet along with beans (about 75+%). I have to eat some dark leafy greens, green tea, and garlic/ginger each day to keep the inflammation at bay. I also eat nuts each day, good for inflammation and good for protein.
2. Beans and Whole grains such as wild rice or brown rice. Limited amounts of non-GMO soy products such as unsweetened silk or tofu.
3. Limit sugar. A little honey or stevia is tolerable. Stevia shouldn't be consumed in large amounts, more than 2 packs a day.
4. In limited amounts: coffee, dark chocolate, and red wine. Swap unsweetened soymilk for coffee creamer if you have dairy issues. I find it works better than almond milk, it's got a fatter taste which is what you look for from cream.
5. Extra Virgin Olive Oil. For everything needing fat. I use no other oils, they will all cause inflammation.
Nutrition Facts has a lot of information on proper ratios of things like teas and wines. What amounts of stevia are safe, etc.
Most epys I've met do not have to adhere to as strict a diet as I, but mine is a combination of research and trial and error. Due to the added bladder pressure from radiation, I have a physical indicator of what causes added stress and pressure and what does not.
This is primarily an inflammation-based diet, which according to current nutritionists is responsible for healthy diet in people in general. Meaning to control heart disease, diabetes, etc.
-Fresh food is best.
-Meats should be from the best sources you can get them from. This takes a little research. For example Alaskan salmon is much better than the Atlantic salmon. Most restaurants do not serve Alaskan. You really have to learn what you are eating with meats.
-Natural canned food is better than processed food. Processed foods should be eliminated completely.
-If you choose to go vegan, be sure to supplement B12. Not getting B12 can cause permanent damage to your body. Occasional zinc supplementation might be good as well.
Despite concerns about a vegan diet, I do not have trouble maintaining protein, calcium or other levels by just eating fresh veg, nuts and a little soy.
Before radiation, with the pressure less than it is now I could eat things like small amounts of cheese and small amounts of fish, etc. Now that pretty much causes a noticeable reaction, so I limit them.
Just remember, fresh is best. Know your food sources, where your food is coming from and it's quality.
My Diet Basics:
1. Fruits, vegetables, nuts, green tea. Both cooked and not cooked. Adding garlic and ginger to dishes will help for inflammation. You can both cold brew and hot brew green and white teas.
Fresh is key and these comprise most of my diet along with beans (about 75+%). I have to eat some dark leafy greens, green tea, and garlic/ginger each day to keep the inflammation at bay. I also eat nuts each day, good for inflammation and good for protein.
2. Beans and Whole grains such as wild rice or brown rice. Limited amounts of non-GMO soy products such as unsweetened silk or tofu.
3. Limit sugar. A little honey or stevia is tolerable. Stevia shouldn't be consumed in large amounts, more than 2 packs a day.
4. In limited amounts: coffee, dark chocolate, and red wine. Swap unsweetened soymilk for coffee creamer if you have dairy issues. I find it works better than almond milk, it's got a fatter taste which is what you look for from cream.
5. Extra Virgin Olive Oil. For everything needing fat. I use no other oils, they will all cause inflammation.
Nutrition Facts has a lot of information on proper ratios of things like teas and wines. What amounts of stevia are safe, etc.
Tuesday, July 30, 2013
Food and Nutrition: Websites and Books
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.
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.
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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