I had been noticing neck discomfort, and increasing fatigue for several months. During a routine visit to my doctor I mentioned the fatigue and he ordered a thyroid panel and a CBC. The thyroid panel was a little abnormal and the CBC was normal. Nothing that explained the fatigue. A few days later, while working, I started having neck pain and just feeling bad. My symptoms worsened within just minutes. I began having extreme head pain and after being taken to the ER was found to have a CSF pressure of 306. After nuclear med scans, MRI's, and a repeat spinal tap, I have been diagnosed with intercranial hypertension/pseudotumor and they have noticed that the opening in my foramen is smaller than usual with minimal Arnold Chairi and have empty sella syndrome. I have also been told that this probably contributed to my previous problem with infertility. I have had two surgical opinions in regards to consideration of a shunt, surgically enlarging foramen, and release of tonsils. At present I have chosen to use diuretic therapy and have done well with this for over three years and only visit my physician about every 6 mo. I do notice that my symptoms of fatigue with head and neck pain increase before and during my menstrual cycle. My physician has added spironolactone to take concurrently during this time. I'm finding that the symptoms that used to occur for only a few days per month are now lasting more days. Knowing how I feel each month, I can't help but think that the high ICP and hormone shifts are affecting each other. I wonder if hormone therapy would help and hope that this problem can be managed without surgery. Do you think my next step should be going to an endocronologist?
I think you are analyzing the problem very well. A discussion about this with an endocrinologist is a great idea. It can't hurt and it may provide you with an alternative to surgery, or at least temporize. Make sure your neurosurgeon is aware of the ups and downs of your symptoms. You don't want to miss a real danger sign.
God luck, come back and let us know what the endo said. Quix
My son was diagnosed with pseudotumor cerebri when he was 7 months old (yes, that's rare). He was on Diamox (acetazolamide) for well over a year, which brought his ICP down to about 200, which is still not considered normal for a child but did relieve his headache and swelling of the optic nerves. Interestingly, though, during this time his growth rate slowed significantly, and the 2-hour+ growth hormone test (whatever it's called) showed low growth hormone. He received a V-P shunt when he was 2, and within about a 6-12 month period, he got back on track growth-wise.
I know this isn't exactly the hormonal problem you're talking about, but the fact that my son had an endocrine problem along with his pseudotumor cerebri seems to substantiate your concern.
Here's the thing, though. I found a study (admittedly with a small number of participants) that showed that Diamox slows growth in children. So was it the increased ICP or the drug? Who knows.
About the Chiari. My sister was diagnosed with that and had the surgery, but it was not the miracle she hoped it would be. In fact, she has had a multitude of other problems since.
I hope your visit to the endocrinologist provides some answers.
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