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CSF Leak/IHP/Pituitary Macroadenoma
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CSF Leak/IHP/Pituitary Macroadenoma

My question is: Is a nuclear medicine study called a Cisternogram using radioactive isotopes a good test for confirming a CSF Leak. I was given this test and it came back "dramatically abnormal". I was sent to one of the best hospitals in the state for repair to be told that "I didn't have a leak" after a CT scan. I am so confused. I have clear, watery leakage from my right nostril daily and at night I gag from this running down the back of my throat, most of the time causing me to throw up. The headaches are almost unbearable. The doc I was referred to had me collect spinal fluid (hard to do by the way, whatever this is absorbes into my skin pretty quickly and I have little warning it is about to happen), Anyway, I collected it and took it back to the hospital which is 300 miles from home. They failed to tell me to refridgerate until the night before my appointment, so I stuck it in the fridge at the hotel and it froze. I told the nurse and she said it should not make any difference. That test can back negative so they declared no leak.  One doc belives that I DO have a leak and the other does not. One doc sees the pituitary adenoma a 12x6x4 and the other does not. One doc believes that I have Intercranial Hypertension and the other does not. All I know is that they don't know and that if I don't get some relief I don't know what I am going to do. Anyone else had anything like this happen? I originally went to the doctor for a reoccuring sinus infection and it turned into all of this.
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657231_tn?1390151580
That test should detect the leak, but if you have pseudotumor cebebri, or the leak is only intermittent, there may be issues and your test may be normal.

I had a friend with that issue.

That seems like an awfully large lesion to be in dispute - that could cause a pressure issue as well.

My suggestion: Find a neuro-endocrinologist so at least when you travel, you are seeing someone competent and get evaluated and treated for the pituitary tumor. One that large should not be left alone like that. You need testing.

For the leak, caffeine helps. To collect, use coffee filters as they are very absorbent and you can observe how the fluid separates - CSF will show a distinctive pattern.

Get a pituitary surgeon to look at your films. Get a copy of the films on CD and the report yourself. Heck, look at them yourself. I have mine on my profile. Those are post op, but you can look at them to see where to look on yours. Learn all you can.
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657231_tn?1390151580
That test should detect the leak, but if you have pseudotumor cebebri, or the leak is only intermittent, there may be issues and your test may be normal.

I had a friend with that issue.

That seems like an awfully large lesion to be in dispute - that could cause a pressure issue as well.

My suggestion: Find a neuro-endocrinologist so at least when you travel, you are seeing someone competent and get evaluated and treated for the pituitary tumor. One that large should not be left alone like that. You need testing.

For the leak, caffeine helps. To collect, use coffee filters as they are very absorbent and you can observe how the fluid separates - CSF will show a distinctive pattern.

Get a pituitary surgeon to look at your films. Get a copy of the films on CD and the report yourself. Heck, look at them yourself. I have mine on my profile. Those are post op, but you can look at them to see where to look on yours. Learn all you can.
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1093617_tn?1279305602
Thank you for your question. CSF leak or spinal headache usually resolves within few days or week as many of the causes of leak go away on their own after a few days. Complete bed rest or blood patches for several days are usually recommended. Additionally, pituitary adenomas are brain tumors that may remain asymptomatic for long years. But if it is large it can cause headache, vision problems, hormonal imbalance, paralysis, seizures and gait disorders. Therefore, surgical intervention is essential to remove the large adenomas and if permanent damage needs to be avoided.  Craniotomy, needle aspiration and cerebral shunts are common surgical treatment that may help.  Please consult a neurologist right away in this regard. Hope this helps.
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Avatar_f_tn
Thank you for your response. I am under the care of 2 neurologist that agree that I have a significant CSF leak, the issue is with the ENT. I was referred to him by my local physician. The first thing he did was look at my medical records and say "this test is garbarge" referring to the cisternogram. He promptly ordered a CT (no contrast) and declared me leak free. The other doctors, however do not agree. And here I am, with no relief. One physician just said, I'll let him handle it. I don't know if I mentioned that I also had an endoscopic sinsus surgery 15 months prior to symptoms. I really do appreciate your response. The physician most active in my case is extremely worried about a brain infection of soem sort. All the while I am receiving no care until the resolve their dispute. I have come to have a distaste for "specialist". It seem that they each want to one up the other at the expense of their patients. Hope this is not true in all cases.
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