6 thoughts on “Contact

  1. My 8 year old daughter likely has a tumor that the Doctor is describing as lhermitte-duclos-disease. Can we please contact you for advice?

  2. Is there a number my wife and I can reach you at or would you mind to give us your email address so we can email you our contact information.

    Here is our back ground story. For about 10 days our 8 year old girl, Norah, has headaches and intermittent upset stomachs. We along with our pediatrician thought something else was wrong. Thankfully, the recommended an MRI. The MRI revealed that Norah has hydrocephalus and a large tumor in her cerebellum close to her brain stem. Initially, we were told that we were going to the University of Iowa for emergency surgery. After that, the story changed every several hours as we were passed from doctor to doctor and other areas of the hospital.

    Once we met the Staff Neurologist who is assigned to Norah, we found that she most likely has Dysplastic Gangliocytoma also known as Lhermitte-Duclos disease. They are saying there is really no boundary to the tumor, and it is hard to tell where the tumor ends and the brain begins. In the case of surgery it would appear as normal brain matter and can really only be identified as a tumor under a microscope or in an MRI. Due to this, the size, and the location in the brain, it is impossible to completely remove the tumor. The Doctor will meet with us Monday night to decide what the next steps are. The tumor is blocking the flow of Cerebral fluid and causing high pressure in her brain. This has to be dealt with. They will somehow relieve the pressure and may perform the biopsy. The biopsy is dangerous itself and sometimes has undesirable side effects.

    After the biopsy, if the doctor is correct, there is really no other treatment other than keeping the cranial pressure low and dealing with any further damage the tumor causes.

    We want to learn as much about LDD as possible. We are trying to find if there are any other resources we should put in our doctor’s hand or if there are an other specialist we should have evaluate her MRI and/or condition.

    Norah is an amazing little girl. We are really blessed, she is completely unaffected by all of this so far. We just don’t know what to expect next and how to give her the best and most help.

    Thanks,
    Gary and Tiffany

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