Brain/Pituitary Tumors Community
Newly diagnosed
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Newly diagnosed

Good morning all.  I have just been diagnosed with a 2.5cmx2.0cmx2.1 cm sellar mass with suprasellar extension and prominent mass effect upon the optic chiasm. In addition a chronic cystic appearing structure of the basal ganglia region indicates perivascular spaces or lacunar infarcts.  I have not been seen by a specialist as I have no insurance.  All I have is the radiologist report, but no one to tell me what it all means.  What I do have are blinding headaches, weakness, fatigue, extreme nausea and a generalized shaky feeling.  Some blood work was done, but no hormonal abnormalities were discovered.  Any help is appreciated.
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657231_tn?1390151580
By my layman read, you have a larger pituitary tumor that has extended up into your optic chasm - in other words up near you optic nerves.

Did you happen to get a copy of the blood work? You would have needed a LOT of blood work to cover what you needed.

As you have no insurance, can you apply for medicaid? You need surgery ASAP. You can also have a doctor contact NIH - national institutes of health - and they take some patients - or some state hospitals take charity cases. You can also contact the expert here - he is an expert surgeon (which is something that you absolutely need - you need a surgeon with a LOT of skill) and that hospital takes charity cases. You are going to have to work and call around or your doc is going to have to help you - but you can find the care that you need.
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657231_tn?1390151580
By my layman read, you have a larger pituitary tumor that has extended up into your optic chasm - in other words up near you optic nerves.

Did you happen to get a copy of the blood work? You would have needed a LOT of blood work to cover what you needed.

As you have no insurance, can you apply for medicaid? You need surgery ASAP. You can also have a doctor contact NIH - national institutes of health - and they take some patients - or some state hospitals take charity cases. You can also contact the expert here - he is an expert surgeon (which is something that you absolutely need - you need a surgeon with a LOT of skill) and that hospital takes charity cases. You are going to have to work and call around or your doc is going to have to help you - but you can find the care that you need.
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Avatar_f_tn
Thank you for your response.  I have been turned down for Medicaid, and am considering applying for disability.  I am seen at a community clinic, and they sometimes can find doctors willing to donate services.  The blood work I had done was cursory at best, mainly the standard metabolic panel, and my thyroid. prolactin and cortisol levels were normal.I do take thyroid medication however, so I would expect it to be controlled.  I am 52 years old, have type 2 diabetes, high blood pressure, high cholesterol.  BTW I am 5'9 and weigh 130 lbs.
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657231_tn?1390151580
I would apply but keep in mind it takes some time to get disability (unless you have a pre-approved fatal disease ugh) and then a three year wait for medicaire.

What time did they do the testing? You did not get enough - and your tumor can be a non-secreting larger growing one anyway with mass effect issues.

One set of test won't do it and if you had the wrong tests at the wrong time - the test set would not have helped much. Have you looked in the health pages?
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Avatar_f_tn
The blood tests were done mid-morning, non-fasting.  I have read a lot of the posts from people with various kinds of tumors, and it seems even more confusing.  So many doctors that don't know much about pit disorders.
I think the hardest thing, besides having no medical care, is the isolation from family and friends.  This is not contagious, but people seem to be afraid to talk to me about it.  Have you had to look into therapy for depression?  I seem to be sliding down that slope, but don't know where to turn.
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657231_tn?1390151580
The tests should be done early morning, fasting. As for the docs not knowing much - totally agree there. They seem to go on size and not on the impact factor (and heck, the hormones impact everything in the body).

It is confusing at first - but after a while it does get clearer. People don't understand this and it is not just us, I was talking to a friend of mine just going through her second round of cancer - people don't know how to talk to her either so we talk to each other.

I would go get help for depression but make sure that person is skilled with pituitary and does not just toss pills at you. Our chemistry differs a bit and so we have anxiety for a physical reason and it make take a different *cocktail* (if you decide to go that route) to work for you and it may be temporary as well - when you get treated the depression should lessen and in many it goes. I have seen even some clergy that are aware while some so called professionals are duds when it comes to treatment so ask around and settle on someone that can help you.
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Avatar_f_tn
A possible Christmas miracle may be happening to me.  My PCP called yesterday, and believes he has found a neuro at the Shands Hospital Pit center who will see me.  Gainesville, FL is only a few hours from my home, and I have family there I can stay with.  Has anyone been treated there or have any information about the doctors?  I don't know which surgeon my PCP has talked to, but my research points to this center as a good one.  Any imfo would be helpful.  Thanks.
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657231_tn?1390151580
I don't know them, but I hope that they can help you! Keep us posted on your progress!
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