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Thread: 4 Yr old Boy in Bali, Indonesia Diagnosed with SPACE OCCUPYING LESION

  1. #1

    Exclamation 4 Yr old Boy in Bali, Indonesia Diagnosed with SPACE OCCUPYING LESION

    We have dear friends who are Balinese and live in Bali, Indonesia. They are very afraid as their 4 year old son has just been diagnosed, in Bali, with a brain tumor. We know that the medical situation in Bali is not as up to date as it is in the US. We have been to Bali several times and have seen some pretty scary medical "advice" and procedures that the Dr.'s in Bali have done. We are very afraid for our friends and their child and they are over whelmed and don't understand what the Dr. is telling them. They were in the hospital with the boy for about 5 days, and they finally took and MRI and told them this:

    Massa "Space occupying lesion" intra vertrikel lateralis cornu posterior right left not see edema perifokal,dilatasi cornu posterior,rim enhanced with kontras Dd/Choroid plexus cyst bilateral.Choroid plexus papiloma bilateral. We would like to understand this condition/prognosis is, what the suggested care protocol is, etc., so we can offer them some guidance. (possibly some of the words have been misspelled as their English isn't great).

    Then the Dr. sent them home. They are confused and frightened. We are trying to understand what this boy has been diagnosed with, what the typical medical protocol would be and what the prognosis is. Not even sure where to start! I have contacted, thru email, an international hospital in Bali but waiting to hear back. Any help, guidance, understanding and explanation would be very helpful and greatly appreciated. We would like to call our friends and help them understand this better and possibly guide them into a 2nd opinion.

    Open to all feedback!
    Many thanks,
    Laura

  2. #2
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    ((((((Laura & Friends))))))

    Welcome to Brain Talk!

    You are truly a wonderful friend to assist your friends in Bali with their son's condition.

    First of all, I want to clarify that I have no personal experience with brain lesions or reading MRI results. I'm just hoping that I can make a few suggestions to help you help your friends.

    Begin by Goggling "space occupying lesion" and reading all that you can about it. Knowledge is power.

    Looking at a world map, it appears to me that the nearest metropolitan area to Bali is Singapore. A bit further is India. I'm thinking of your friends taking their son to a larger metropolis, where he might receive better or more advanced care. Perhaps you could research what kind of neurological/neurosurgical care is available in these locations, if it is possible for the parents to take their son there. My guess is that he's going to need more sophisticated medical care than he can receive in Bali.

    It is a long flight over a big ocean from Bali to the United States, but it might be worthwhile to research US hospitals, who are willing to take international patients, specifically pediatric patients with a brain lesion.

    Please feel free to post on our Child Neurology forum, as there might be parents there, who can help you, and who might not notice your post on this forum. Child Neuro is here:

    http://www.braintalkcommunities.org/...hild-Neurology

    I'll keep thinking. And praying.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  3. #3

    Smile Good information, thank you!

    Thank you for taking the time to write me! I appreciate your suggestions and will look into them. Unfortunately, traveling out of Bali is out of the question for this family. They live on about $200 a month for their entire family. There is no way they could afford plane tickets, travel, etc. If I had the money I would provide this for them in a moment. They are special people. Sadly, I do not, so I will do what I can from this end to help them.

    They do not understand what the Dr. is telling them, BUT, he did say that although he originally thought surgery was the answer, now he is content to wait 6 months for another MRI. At least that makes me think it's not an emergency situation.

    I am talking to them about what they are feeding him. I was worried that food might be a major contributor to his condition and I think that this possible. They haven't completed a list for me yet, but do say he is hooked on soda, something we all know is about one of the most unhealthy things we can put in our bodies. I know that diet soda has been directly linked to brain tumors so that's what I'll focus on helping them understand.

    Again, thank you for your suggestions! Much appreciated.
    Laura

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