Re: EDS due to excessive melatonin/pineal cyst ?

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Posted by Sharon Nelson on July 18, 2000 at 11:56:09:

In Reply to: Re: EDS due to excessive melatonin/pineal cyst ? posted by Janine on July 18, 2000 at 05:11:07:

Hello Janine. I would be happy to tell you more. First of all my cyst unlike my daughters was found in arachynoid space right by the brain stem. Mine was the size of a small lemon. I at first thought I had sinus infections because my head was hurting. I was treated with 3-4 months of antibiotics. Went to an ENT he took x-rays said I needed sinus surgery. I went for a second opinion(I did not have a history of sinus trouble) They did CAT scans said I didn't have a sinus infection and it did'nt appear that I ever had . His recommendation was an immediate MRI because by that time I had gotten pretty bad. The MRI showed the cyst and as I said I went to numerous neurosurgeons, neurologists all telling me they simply couldn't help me. At least 8-9 months had passed and I did try various "treatments" such as acupuncture, migraine meds,treatment of rotating hairlike structures within the inner ear. In the meantime I was becoming more and more incapacitated. My memory was pretty bad I had a difficult time walking, writing, basically functioning. I was also diagnosed during this time with a low thyroid. That added to the problem. I also went into full flare up stages of ulcerative colitis. I am just now getting back to what I consider a normal life. As I said when Clara's cyst was found we knew for a certainty that her pain was being caused from that cyst. She also had no history of headaches of any kind. I have 5 children and although we have seen a lot of unusual things with our kids we really knew the difference of a normal headache and one being caused from a cyst. We are going to take Clara to an endocrinologist next month because now that we know the cyst was involved we do see other signs of an endocrine problem. She is a pretty active child and yet has put on 8 pounds in just a few months. At lease our pediatrician is agreeing with us now and even made the comment that they were all wrong and how happy she was we got answers and help for Clara. I do hope this helps you some. Please feel free to contact me any time. Kind Regards,
Sharon

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