How worried should I be?

[steph9803]

I was having weakness in my hands and was sent to a nerve specialist. He tested me for some things that came out negative so he went on to order an MRI of my spine and brain. The one of my brain came back as follows

Impression: 2.0 x 1.2 x 2.0 cm nonenhancing mass in the suprasellar cistern which appears to be separate from the pituitary gland, optic chiasm and hypothalamus as well as the internal carotid artery. The differential includes craniopharyngioma and epidermoid cyst. Less likely is a cystic glioma or cystic astrocytoma. CT scan of the sella turcica would be of benefit in further characterizing this lesion as the presence of calcifications or fat within the lesion may distinguish it as being a craniopharyngioma or epidermoid cyst.

How worried should I be? Is that big for being in the brain?  Doctor is sending me to a neurosurgeon, but has no clue how long it will take to get in there. I would really appreciate ANY advice at all...since I totally lost at this point.

Thanks,
Stephanie

[tiredbuthappy]

radiation was our back-up plan. If they found the tumor to be hard to remove due to consistency or adhesiveness, they would have left it. They were up front that they wouldn't know until they got in there. We want to attempt removal since radiation can cause more meningiomas to develop later on down the line. Obviously, I already have risk factors that cause me to grow them, and we wanted to minimize factors that may contribute to more. I do wonder if the willingness to try removal is because of the tumor type. I'm "saving" radiation in case God forbid I have a recurrance that is inoperable, or need radiation for another. I know of several others who have had it removed from around the carotid. It seems that if you go to surgeons who specialize in skull base, you get more of a chance of them being willing to try removal.

Out of curiosity, are pituitary tumors considered skull-base? I'm still learning about the brain.

rumpled's description of the optic chiasm is my understanding as well. I had 2 surgeons do my surgery together, but the consultations with them were separate. The second NS gave the risks to total vision loss higher than the first (at a 10% chance of total blindness). When I asked the 1st NS about this, he said "Oh, he must think the tumor is closer to the optic chiasm." He explained that damage to the optic chiasm can result in total blindness because that is where the optic nerves cross. I asked him if he shared that opinion, and he said he felt it was far enough away to not pose as a great a risk. They did agree about the risks to vision in the eye directly affected by the tumor. They both also agreed to go in conservatively, and only remove as much as they could while minimizing risks to vision. A 3rd NS I consulted had yet another drastically different perspective and much more invasive approach. This is why it is very important to ask lots of questions, and get several opinions, regardless of what type of tumor you have.

[rumpled]

Pit tumors are skull base as well. I know one of my buds who had a pit tumor removed and had a meningioma grow back in the same place (or close) - weird! So she had to have a second surgery but it was a different type of tumor but for those reading, don't freak - that is the only case I know about...

I am also saving radiation as a last resort. I may be there but I am kicking and screaming before I have the radiation since my target is not clear. My rationale is why am I abnormal enough that you think oh, when you open me up all will be normal, yet you feel comfortable enough to zap the heck out of me??? I sense a disconnect here...

I have abnormal visual fields as well (which makes me easy to scare...) but since it does not look classic, it cannot be related. I love having symptoms that just don't make sense.

Re optic chiasm - from when I went to a seminar and the surgeon talked to us, the doc said that once you get in there (and he was talking endoscopic, not open), the anatomical markers can differ in everyone so even though  you are working in a very small area, you can get a bit off - and that can be super bad in an area where where there are super sensitive nerves and large blood vessels. So experience and good tools really is primo. At the same seminar was a lady who barely survived her surgery - she lost an eye, and had had a stroke when the doc not only cut her optic nerve but nicked her carotid... she was lucky to be alive.  

You have to talk to the docs, get an idea of what you have, what you are comfortable with and feel good about what you are doing - but it is essential to get a good surgeon!

[steph9803]

Got a new computer so I can get back to researching now :D thanks for all of the great info!

I had an appt with a dr in knoxville (an hour and a half away)..but had a funny feeling. So I did some research on him and it didn't help..so I got ahold of a cranial neurosurgeon at UT who I think is willing to see me. I have a much better feeling about him. I'm really just looking for an opinion at this point. We'll see how it goes though. Hopefully at the least I can get some question answered after he sees the mri and ct's.

[horselip]

Make sure that you check out Boston too! There are some very good surgeons there. I travel from Hawaii to where ever I have to go...for important things like brain surgery!
Horselip

[steph9803]

I don't have good insurance at all....do any of you know of anywhere that takes people with limited funds. I haven't worked in a year now because of my baby needing 24 hour care...so we have been very strained financially.

Trust me....I hope that I can find some available options soon.

[horselip]

I cannot speak for Brigham and Women's...but Stanford where I go now, supposedly has financial aid.

I am on Medicare and they do accept that. I do not know what you have insurance-wise but if it is an HMO you can go through a lot of hoops to be seen out of network. I wish that I had done that with my initial surgery. I really, really  wish that I had pushed for it. I  did not know then how the surgeon and surgery would affect the rest of my life.