Childhood Brain Tumor/ Appointment w/Mayo FL

Posted by jg1985 @jg1985, Dec 22, 2022

Hello, I am a Childhood Brain Tumor (Hypothalamic Glioma)survivor diagnosed in 1987 at the age of two. I had 3 forms of chemotherapy vp 16, Cristine & Lumistine. I also went through percious puberty at 3. My tumor was stabilized eventually & I was asymptomatic for 10+ years. Fast forward to 2006 I had some swelling in my brain & did cyber knife. About 5 years after I started having all sorts of problems. It started out as upper respiratory infections. Then I got fungal pneumonia 4 times. An endocrine panel was run & I was found out to have hypogonadism put on testosterone & thyroid meds. I was also on tons of steroids as a child & at that time which caused my adrenals to become lazy. I went to UVA & they concluded most of of symptoms were from poisoning from steroids & I was a healthy young man but I was still having problems (Iatrogenic Cushings). I have developed blood pressure problems, severely insulin resistant & much more. I am on blood pressure meds, Ozempic, testosterone, NP Thyroid, Metformin, Morphine (I'm in severe pain) I can't get off my couch & can't do much of anything I just exist.
I sent my records to Mayo almost 3 weeks ago. I had one call last week where someone asked me about a particular MRI that they claimed they didn't have & she wound up finding it. I have not heard anything & called two days ago to check on progress & lady put in a note for an update. I was told in the beginning that it would take 10-14 days. I have been to several hospitals including Shands, UVA, doctors in my area, & Sloan Kettering & no one will take a vested interest. I know I'm GH deficient but need testing amongst other things. I have been like this for 12 years steadily getting worse. I had to stop working in 2016 & I am now on disability. I was also told that Mayo is selective in who they take & I am deathly afraid that they won't help me. I worked so hard in sending my records to them because a lot of them are wrong. Mayo is my last hope. I'm severely depressed & if I don't get help & some quality of life how am I ever going to live my life? This is only part of my journey I'm just writing a condensed version. Just looking to find some information on Mayo because I was told they would call me either way to let me know if they are going to see me. Any help with Mayo Jacksonville would be appreciated thanks.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

I'm sorry this is so stressful to you. But you sent voluminous medical records and they have intake screeners who simply ask basic questions BEFORE your records are forwarded. So it was not realisti to expect an intake coordinator to have reviewed your entire submission. They just want to know a simply concise answer about what your goal was in reaching out, since you sent extensive records to you included further correspondence. You need to be clear + simple at every juncture because a medical facility can't sift thru your extensive records and know what you are seeking. That's just reality.
Hoping for the best for you.


You have to expect that an evaluation would be fluid process because of the volume of medical material you submitted. You can't hold anyone to a time frame estimate. I hope you can have a relaxing weekend + holiday.

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