Somehow, I have started to do so much research into the removal of my meningioma and the after-effects, that I am making myself crazy! (More so than usual!) I joined a group on a social network called, "Meningioma Mommas" and it is has been very helpful but today, I read an article someone posted and "Yikes!" It is some pretty scary stuff. I guess I should know better than to keep reading and researching but....
Here is the article. Knowing I have a titanium plate in my head is really not too comforting now! NOt that I was so comfortable with it before but when you start reading, I start wondering, am I really electro-magnetic sensitive now?
http://articles.mercola.com/sites/articles/archive/2012/08/25/heavy-metal-electromagnetic-fields.aspx
FB PIXEL CODE
ROUGH RIDE
So, I am having some serious trouble moving on from the whole craniotomy thing. It's been 3 weeks since my surgery to remove a (benign) meningioma. Thankfully, I am much better, but now I am getting paranoid about having headaches and weird sensations in my nasal passages, the tightness in myskull: from the plates and screws holding the bone
flap ( I guess!) It feels very tight like your skull is ridged instead of fluid
feeling. (It is hard to explain but feels super weird plus continued poor vision out of my left eye. The surgeon says that the vision problem has nothing to do with the surgery. Hmm? I know I am getting into the bi-focal stage (age 45 yr.) but I am very skeptical about that not being related. The meningioma was the size of a lemon located in my left frontal lobe, so hmmm?! I am also super freaked out about my scar and how big it is. I was told by a massage therapist that I should massage it and put Vitamin E on it so that it doesn't remain hard and give me more headaches in the future. Today, I looked at the actual entry point where the worst part of the scar is and I almost fainted. Everyone tells me it's not so bad and that it is healing nicely, but I haven't shown anyone the ACTUAL entry point. I know this is all superficial stuff but it concerns me, nonetheless. I guess I got worse because I started reading blogs about other people who have had removal of meningiomas and their stories are not all pretty. Almost everyone says exhaustion is normal, so I don't feel so bad there but one person said it could take months even years to have your brain completely heal! Wow!
I will tell you this, in the whole scope of things, right now , everything in my life makes sense. If you have gone through this or any life change health-related event, I can tell you that the little things that bother you will fall by the way-side and you’ll just be really grateful to be alive, as I am! I am truly trying to enjoy that feeling (at least when I don't have headaches or when I am not being a referee to my two kids who are always arguing! :o)
It's a rough ride and very surreal and I know it will be a long road to full recovery but I keep telling myself how lucky I am and trying to learn a little more each day.
I will tell you this, in the whole scope of things, right now , everything in my life makes sense. If you have gone through this or any life change health-related event, I can tell you that the little things that bother you will fall by the way-side and you’ll just be really grateful to be alive, as I am! I am truly trying to enjoy that feeling (at least when I don't have headaches or when I am not being a referee to my two kids who are always arguing! :o)
It's a rough ride and very surreal and I know it will be a long road to full recovery but I keep telling myself how lucky I am and trying to learn a little more each day.
STIR-CRAZY
I said I was moving on from the topic but I can't! This is why I blog, to vent! I am feeling much better physically but now my vain, superficial-self is showing! I am frustrated at this scar, although I am so grateful they did not shave my head. I am tired of wearing a bandana but the scar is so creepy, I must. It is itchy and it stings and my hair is three different colors! My surgeon said I have to wait at least one month before I dye my hair again! I am eating like a manic and I can't even blame it on the steroids anymore! I go into fits of anger and rage and again, I cannot blame it on the steroids because I finished them a week ago!!! Right, it's not the steroids after effect? I am going stir-crazy with two kids in the house until January 6th! I really am grateful, but damn, I really I need "normal" again. Whatever that is...
"Everything will be alright does not mean, Everything will stay the same."
"Everything will be alright does not mean, Everything will stay the same."
TIME TO REST
I believe I have delved enough into the logistics of what I went through physically and hopefully I can help someone out there who may be in the diagnosis research stage of meningiomas as well. I believe it is time for me to move on with some more venting, analyzing fun and photos!
When I think about what I went through and my crazy lack of rest, I think I must really be nuts! Two days after brain surgery I was with my family taking our 11-year old on a Friday night to a trampoline bouncing themed-amusement place! Luckily, it was not mobbed. The next day, I was "shooting hoops" with my 6-year old outside, a few days later, we were at our city's holiday parade standing in the streets waiting for our daughter to go by with her marching band! Really?
I guess, this is why this week, I sit quietly at home typing away and trying to rest. Sooner or later it all catches up with you. I am figuring it is the fear of not being around anymore that makes one want to live every moment with fierceness. Gotta remember that feeling!
When I think about what I went through and my crazy lack of rest, I think I must really be nuts! Two days after brain surgery I was with my family taking our 11-year old on a Friday night to a trampoline bouncing themed-amusement place! Luckily, it was not mobbed. The next day, I was "shooting hoops" with my 6-year old outside, a few days later, we were at our city's holiday parade standing in the streets waiting for our daughter to go by with her marching band! Really?
I guess, this is why this week, I sit quietly at home typing away and trying to rest. Sooner or later it all catches up with you. I am figuring it is the fear of not being around anymore that makes one want to live every moment with fierceness. Gotta remember that feeling!
LOCATION OF TUMOR
What difference does the location of the tumor make?
Convexity meningiomas
These grow on the surface of the brain, often toward the front. They may not produce symptoms until they reach a large size. Symptoms of a convexity meningioma are seizures, focal neurological deficits, or headaches.Falx and Parasagittal meningiomas
The falx is a groove that runs between the two sides of the brain (front to back), and contains a large blood vessel (sagittal sinus). Parasagittal tumors lie near or close to the falx. Because of the danger of puncturing the blood vessels, removing a tumor in the falx or parasagittal region can be difficult. Large parasagittal meningiomas may result in bilateral leg weakness.Olfactory groove meningiomas
Olfactory groove meningiomas grow along the nerves that run between the brain and the nose. These nerves allow you to smell, and so often tumors growing here cause loss of smell. If they grow large enough, olfactory groove meningiomas can also compress the nerves to the eyes, causing visual symptoms. Similarly, meningiomas growing on the optic nerve can cause visual problems, including loss of patches within your field of vision, or even blindness. They can grow to a large size prior to being diagnosed due to changes in the sense of smell and mental status changes being difficult to catch.Sphenoid meningiomas
Sphenoid meningiomas lie behind the eyes. These tumors can cause visual problems, loss of sensation in the face, or facial numbness. Tumors in this location can sometimes involve the blood sources of the brain (e.g. cavernous sinus, or carotid arteries), making them difficult or impossible to completely remove.Posterior fossa meningiomas
Posterior fossa tumors lie on the underside of the brain. These tumors can compress the cranial nerves causing facial symptoms or loss of hearing. Petroclival tumors can compress the trigeminal nerve, resulting in sharp pain in the face (trigeminal neuralgia) or spasms of the facial muscles. Tentorial meningiomas or those near the area where your spinal cord connects to your brain (foramen magnum) can cause headaches, or other signs of brain stem compression like trouble walking.Intraventricular meningiomas
Intraventricular meningiomas are associated with the connected chambers of fluid that circulate throughout the central nervous system. They can block the flow of this fluid causing pressure to build up, which can produce headaches and dizziness.Intraorbital meningiomas
Intraorbital meningiomas grow around the eye sockets of your skull and can cause pressure in the eyes to build up, giving a bulging appearance. They can also cause an increasing loss of vision.Spinal meningiomas
Spinal meningiomas account for less than 10% of meningiomas. They tend to occur in women (with a female/ male ratio of 5:1), usually between the ages of 40 and 70. They are intradural (within or enclosed within the dura mater), extramedullary (outside or unrelated to any medulla) tumors occurring predominantly in the thoracic spine. They can cause back pain, or pain in the limbs from compression of the nerves where they run into the spinal cord.How common is each location?
Falx or parasagittal 25%Convexity 20%
Sphenoid wing 20%
Olfactory groove 10%
Supresellar 10%
Posterior fossa (petrosal) 10%
Intraventricular 2%
Miscellaneous (e.g., optic nerve, clivius) 3%
(ref. http://www.brighamandwomens.org/departments_and_services/neurosurgery/meningioma/meningiomafacts.aspx#what_is)
WHAT IS A MENINGIOMA?
What is a meningioma?
A meningioma is a type of tumor that develops from the meninges, the membrane that surrounds the brain and spinal cord. There are three layers of meninges, called the dura mater, arachnoid and pia mater. Most meningiomas (90%) are categorized as benign tumors, with the remaining 10% being atypical or malignant. However, the word "benign" can be misleading in this case, as when benign tumors grow and constrict and affect the brain, they can cause disability and even be life threatening.In many cases, benign meningiomas grow slowly. This means that depending upon where it is located, a meningioma may reach a relatively large size before it causes symptoms. Other meningiomas grow more rapidly, or have sudden growth spurts. There is no way to predict the rate of growth for a meningioma, or to know for certain how long a specific tumor was growing before diagnosis.
Most people with a meningioma will only have a tumor at only one site, but it is also possible to have several tumors growing simultaneously in different parts of the brain and spinal cord. When multiple meningiomas occur, more than one type of treatment may have to be used.
Meningiomas vary in their symptoms and appropriate treatment options depending on where they are located.
A primary brain tumor originates in the central nervous system, while metastatic brain tumors spread to the brain from other parts of the body. Meningiomas account for about 27% of primary brain tumors, making them the most common of that type.
Symptoms
Because meningiomas commonly are slow-growing tumors, they often do not cause noticeable symptoms until they are quite large. Some meningiomas may remain asymptomatic for a patient's lifetime or be detected unexpectedly when a patient has a brain scan for unrelated symptoms. Presenting signs and symptoms depend on the size and location of the tumor. Symptoms of meningiomas may include any of the following:
- Headaches
- Seizures
- Change in personality or behavior
- Progressive focal neurologic deficit
- Confusion
- Drowsiness
- Hearing loss or ringing in the ears
- Muscle weakness
- Nausea or vomiting
- Visual disorders
(ref. Brigham and Women's Hospital and http://www.aans.org )
RESEARCH
So now that I have been through the physical ailments of removing a meningioma and its after effects, I figured I'd do a little research. I know, most "normal" people do the research at the beginning, prior to surgery but my surgeon was so confident and non-chalant, that consequently, I was as well. Nonetheless, I am going to add all the info I find in the efforts of perhaps helping those out there who may be researching the topic as well.
WHAT THE HECK JUST HAPPENED?!
Wow, what horrible pain I experienced. I don't know how people do drugs, willingly! Really? They must be nuts! Exactly, one week after having a meningioma removed from my left frontal lobe, I began to experience headaches and swelling and pain to the touch in every part of my body. Even wearing my bra hurt me. My eyelashes hurt. If I laughed, it hurt. I can't believe I had taken zero pain meds and was now being forced to take some pain killers one week later.
Where in the world was this coming from? Well, it turns out according to my neurosurgeon, this is all "normal stuff" coming off of the steroids. He was was more concerned on how my incision was doing than the horrible pain I was experiencing all over my body. I guess I have to say it was somewhat comforting to know the surgeon was not freaked out about this, but I, on the other hand, was like "what the heck just happened to me?!"
I guess it's all part of the process. One day at a time.
MY HAIR FALLING OUT
I know there are hundreds and hundred of blogs out there, especially on people who like to talk about their life experiences, and I know that this one is probably not that much different from the next but somehow, it helps me and perhaps it may help or at least entertain someone out there as well, so I continue to write and vent and share and pass the time until "reality" again. Whatever that may be.
Yesterday, as I finally got the "green" light to wash my hair after brain surgery six days prior, I stood in the shower pulling clumps of my hair out, thankfully. Yes, thankfully appreciating that it was the mix of blood and iodine and whatever other disgusting stuff was in my hair. Thankful for the 90% chance my tumor was/is benign. Thankful that I escaped the horrific possibility of what could have been. I am grateful that I have an opportunity to continue in my children's lives and in the lives of my family and friends. That I am blessed with another day, another week and however long this life gives me.
I am blessed that I can write about this now. That I can look back and see what it could have been. It makes me look at what my mother went through with her "death sentence" (cancer diagnosis) and that horrific battle. Like the millions of women and people out there fighting cancer and disease and constant battle on a day to day basis, my life lesson remains the wisdom of knowing there is more to life than the day to day silliness we stress out about. Life is way too complex to just be meaningless. Sure, these experiences change you and I for one am glad my hair fell out because I was pulling it out, not because of a horrible diagnosis. I was lucky. I am lucky.
Yesterday, as I finally got the "green" light to wash my hair after brain surgery six days prior, I stood in the shower pulling clumps of my hair out, thankfully. Yes, thankfully appreciating that it was the mix of blood and iodine and whatever other disgusting stuff was in my hair. Thankful for the 90% chance my tumor was/is benign. Thankful that I escaped the horrific possibility of what could have been. I am grateful that I have an opportunity to continue in my children's lives and in the lives of my family and friends. That I am blessed with another day, another week and however long this life gives me.
I am blessed that I can write about this now. That I can look back and see what it could have been. It makes me look at what my mother went through with her "death sentence" (cancer diagnosis) and that horrific battle. Like the millions of women and people out there fighting cancer and disease and constant battle on a day to day basis, my life lesson remains the wisdom of knowing there is more to life than the day to day silliness we stress out about. Life is way too complex to just be meaningless. Sure, these experiences change you and I for one am glad my hair fell out because I was pulling it out, not because of a horrible diagnosis. I was lucky. I am lucky.
THE OUTCOME
Well, I am happy to report that I am back to blogging after successful brain surgery on Dec. 3, 2013. I was so non-chalant about it as I went into it, that now sitting back and reflecting upon it three days later, all I can say is "WOW!" I was sent home ONE day after brain surgery for the removal of a meningioma. Oh! and I also had to have an embolization procedure. (An embolization involves threading a thin tube (catheter) up the leg
veins or arteries directly into the blood vessels that feed the
tumor. Then a glue-like clotting substance is injected to choke off and
shrink the tumor.) In my case, they went up the groin area and I was pretty much awake. This was not any fun at all! I kept asking for more "twilight" medicine, so I would not hear and see the procedure, but no luck!
I am eternally grateful for the outcome. The tumor that was removed was benign. The surgeon said, it is most likely Grade 1" ( Benign: these are very slow-growing tumors and account for 75 percent of all meningiomas.) I will still have to wait for the pathology report but, it is benign according to the surgeon. I was very very lucky that this MENINGIOMA was operable and benign and easily accessible.
I cannot even begin to express the gratitude. I know there will be many more bumps in the road of life but at least I know this is a pretty huge one I just crossed! I am very happy with the outcome and just want to let you all know that may be researching what in the world a "meningioma" is, that it will be okay!
I am eternally grateful for the outcome. The tumor that was removed was benign. The surgeon said, it is most likely Grade 1" ( Benign: these are very slow-growing tumors and account for 75 percent of all meningiomas.) I will still have to wait for the pathology report but, it is benign according to the surgeon. I was very very lucky that this MENINGIOMA was operable and benign and easily accessible.
I cannot even begin to express the gratitude. I know there will be many more bumps in the road of life but at least I know this is a pretty huge one I just crossed! I am very happy with the outcome and just want to let you all know that may be researching what in the world a "meningioma" is, that it will be okay!
GRATEFUL
I guess these life changing things happen to put life in perspective. As I said goodbye to my son today, Dec. 2, 2013, as he left on the bus and as I dropped off my daughter in middle school, I said "I love you" to them both in a whole different way. I said goodbye as if it was my last time. I guess knowing you are going to have brain surgery will do that to you! This is how I believe we should always live, except we all get complacent and forget.
Thanks to this experience, it is very clear on my mind that I am very grateful and appreciative of my kids and my life. I mean, I have ALWAYS been grateful but it is with extra love that I sent them off this morning.
Thanks to this experience, it is very clear on my mind that I am very grateful and appreciative of my kids and my life. I mean, I have ALWAYS been grateful but it is with extra love that I sent them off this morning.
THANK YOU!
Recently, when I started feeling "weird" I thought to myself "oh, oh, here we go!" I started having headaches, blurry vision, ocular migraines and an overall feeling of not "feeling right." I kept telling my best friend, I don't feel right. She kept telling me "you'll be fine." And I kept saying, "I know my body." I usually do not go to the doctor. Yea, sure I donated my kidney and all but that was enough for me, other than the basics, you know, the doctor for pap and mammogram. So, if you know me, you know I had to be feeling really weird to go to the doctor twice in two weeks and pursue an answer, which I got! I insisted on seeing the main doctor, not just the P.A's (even though they are good too) but experience tops it all and my doctor has just that.
The doctor order an MRI for me. Two of them as a matter of fact. Once with contrast and one without. And "wala," my diagnosis. I never thought I would be grateful to have a diagnosis of a MENINGIOMA. I will let you Google that one. You can do a little research as you read too!
For now, all I know is that 90% of the time it is benign and I am happy to take that. I do have to have surgery but I am fortunate that it is operable! All in all, if I have to have something, I'll take this. I don't know what else life has in store for me down the line, but hopefully, it will be what I can handle. No matter what I have to go through, I am very grateful as this happens to me on Thanksgiving weekend 2013. I am grateful for my life, my kids, my family, my friends and all my experiences, good, bad and in between! Thank you!
STRANGER DANGER
This is not really the uplifting kind of story I want to talk about in my blog, but when I read this, it hit me like a ton of bricks! How MANY times have I been at the store with my kids and have been talking out loud about our personal stuff, like these kids? This little girl was asking for something and the mother was telling her out loud how she couldn't afford it! I have done that out loud because I wasn't going to buy something for my kid, I get that. But what I do NOT get it is how this mother allowed her and her children to get into a vehicle with a stranger, or to even engage in a conversation with a stranger? I know hindsight is 20/20, but my goodness, how can you allow your kid to even accept anything from a stranger, even if you are broke. Today's world does not allow for any breaks. It is a cruel, cruel world. And here we have it, the poor little girl is gone, dead.
I know this happens all the time, and I may have come close to this kind of stranger danger as well, on occasion. For example, just yesterday, I was at Starbuck's with my family, I was at the counter waiting for my turn to pay and my two kids were sitting at a table a little further away from me and when I looked over there one of the times, there was a man talking up a storm discussing the Miami Heat. When I realized it, he was talking to MY kids! My 6-year old was of course totaling engaging in this conversation and arguing his points, as he always does, but my 10-year old had her back turned to him and was only nodding yes or no to some questions. I know she was making every effort to maintain the rule of not talking to strangers, which for that, I am proud of her. My son, well, I still have a LOT of teaching to do on that topic.
It turns out the guy was the security guard there at Starbuck's or the whole shopping center (with a badge,) but in my opinion, and like I tell my kids, badge or not, security or not, he should NOT have been engaging in a conversation with two children who were in the eyes of the public, sitting alone! He kept asking them questions, telling them how smart they were etc...
As this was going on, I was in a huge line and I interrupted the cashier and asked her if he was really the security guard there. "Yes," she said. "Well, I said, he is interrogating and talking up a storm with my kids, not cool." When I finished, I said to the man, "If they are being rude to you or not answering you, it is because I tell them not to talk to strangers." He said, "Oh, yea that's very smart," as he showed them his badge trying to justify that it was okay to speak with him. And once again, I tell my children, I don't care how nice they are, what they show you, what they offer you, you NEVER go with anyone for any reason unless one of your parents have indicated to do so. It is a tough line to draw between your kids being polite when a random person says hello or ignoring a stranger. Honestly, I rather my kids IGNORE the stranger and be safe and alive!
Here is the heart-breaking story below. Please people, do not let your kids talk or go with a stranger ever!
The body of 8-year-old Charish Lilly Perriwinkle was discovered near a church in Jacksonville, Fla. around 10 a.m. Saturday, Jacksonville.com reported.
UPDATE: Initial reports suggested that Charish Perriwinkle's mother allowed her daughter to go to McDonald's with Donald James Smith. The mother has now told Action News Jax that she did not realize Smith left with the girl.
Perriwinkle was abducted from a Walmart in Jacksonville at around 11 p.m. Friday.
Donald James Smith, a registered sex offender, has been arrested and charged with murder, according to Action News Jax.
Police have not commented on the cause of Perriwinkle's death.
The girl's mother, Rayne Perriwinkle, told Action News Jax that she and her daughter met Smith Friday evening at a dollar store. Her two other children, ages 4 and 5, were also with her, according to Jacksonville.com.
Smith overheard the mother saying she couldn't afford to buy her daughter a dress, and offered to help her out. She says Smith told her his wife had a Walmart gift card, and could meet them at Walmart and use the card to buy items for the family.
They headed to the Walmart in Smith's van. Once there, Perriwinkle says Smith kept insisting they were waiting for his wife. At one point, he said he was heading to the store's McDonald's. The mother says she did not realize her daughter was going with him.
"He asked if I wanted anything and I heard Cherish say 'cheeseburger.' I thought she stayed near me. I didn't realize she went with him. I didn't let her go with him like people think," the mother told the station.
Smith, 56, was previously convicted of attempted kidnapping and lewd and lascivious assault on children. Police tracked down Smith's van driving on I-95 in Jacksonville at around 9 a.m. Saturday. They have not said whether or not Smith led them to the girl's body.
Rayne Perriwinkle's two younger children were unharmed and remain in her custody.
I know this happens all the time, and I may have come close to this kind of stranger danger as well, on occasion. For example, just yesterday, I was at Starbuck's with my family, I was at the counter waiting for my turn to pay and my two kids were sitting at a table a little further away from me and when I looked over there one of the times, there was a man talking up a storm discussing the Miami Heat. When I realized it, he was talking to MY kids! My 6-year old was of course totaling engaging in this conversation and arguing his points, as he always does, but my 10-year old had her back turned to him and was only nodding yes or no to some questions. I know she was making every effort to maintain the rule of not talking to strangers, which for that, I am proud of her. My son, well, I still have a LOT of teaching to do on that topic.
It turns out the guy was the security guard there at Starbuck's or the whole shopping center (with a badge,) but in my opinion, and like I tell my kids, badge or not, security or not, he should NOT have been engaging in a conversation with two children who were in the eyes of the public, sitting alone! He kept asking them questions, telling them how smart they were etc...
As this was going on, I was in a huge line and I interrupted the cashier and asked her if he was really the security guard there. "Yes," she said. "Well, I said, he is interrogating and talking up a storm with my kids, not cool." When I finished, I said to the man, "If they are being rude to you or not answering you, it is because I tell them not to talk to strangers." He said, "Oh, yea that's very smart," as he showed them his badge trying to justify that it was okay to speak with him. And once again, I tell my children, I don't care how nice they are, what they show you, what they offer you, you NEVER go with anyone for any reason unless one of your parents have indicated to do so. It is a tough line to draw between your kids being polite when a random person says hello or ignoring a stranger. Honestly, I rather my kids IGNORE the stranger and be safe and alive!
Here is the heart-breaking story below. Please people, do not let your kids talk or go with a stranger ever!
Charish Lilly Perriwinkle Body Found: Donald James Smith Arrested In 8-Year-Old Girl's Abduction
The Huffington Post
|
By Hilary Hanson
Posted: 06/22/2013 12:02 pm EDT | Updated: 06/23/2013 8:42 am EDT
UPDATE: Initial reports suggested that Charish Perriwinkle's mother allowed her daughter to go to McDonald's with Donald James Smith. The mother has now told Action News Jax that she did not realize Smith left with the girl.
Perriwinkle was abducted from a Walmart in Jacksonville at around 11 p.m. Friday.
Donald James Smith, a registered sex offender, has been arrested and charged with murder, according to Action News Jax.
Police have not commented on the cause of Perriwinkle's death.
The girl's mother, Rayne Perriwinkle, told Action News Jax that she and her daughter met Smith Friday evening at a dollar store. Her two other children, ages 4 and 5, were also with her, according to Jacksonville.com.
Smith overheard the mother saying she couldn't afford to buy her daughter a dress, and offered to help her out. She says Smith told her his wife had a Walmart gift card, and could meet them at Walmart and use the card to buy items for the family.
They headed to the Walmart in Smith's van. Once there, Perriwinkle says Smith kept insisting they were waiting for his wife. At one point, he said he was heading to the store's McDonald's. The mother says she did not realize her daughter was going with him.
"He asked if I wanted anything and I heard Cherish say 'cheeseburger.' I thought she stayed near me. I didn't realize she went with him. I didn't let her go with him like people think," the mother told the station.
Smith, 56, was previously convicted of attempted kidnapping and lewd and lascivious assault on children. Police tracked down Smith's van driving on I-95 in Jacksonville at around 9 a.m. Saturday. They have not said whether or not Smith led them to the girl's body.
Rayne Perriwinkle's two younger children were unharmed and remain in her custody.
I'M BACK
Well, as usual it's been a while since I posted anything on my blog because I have been so busy with all my side projects and social media world. But here I am to keep posting and venting in the online world determined to keep it going!
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