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589816 tn?1332976771

How worried should I be?

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
36 Responses
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Avatar universal
Pit tumor docs are experienced in that area (which is called the skull base) and they typically have the tools to get stuff out using minimally invasive surgery so it is an easier recovery at times - not all lesions can be removed that way but it is worth getting the opinion.
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589816 tn?1332976771
I knew I was forgetting something :P He told me to get another opinion from a dr who has experience with this area of the brain. He said he thinks that with something so serious anyone would feel better with a second or third opinion for piece of mind. If we were to decide to watch it he already scheduled another MRI for 4 months.
I'm here at Vanderbilt's Children's Hospital and the neurology social worker came in and we started talking about it..she's going to go over to the Pituitary Center to see what they can do for me. I brought my records and discs so maybe they'll take a look at them while I'm up here.
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Avatar universal
On the W&W - just don't let it get more complex... I would get another opinion... can't go wrong with at least one more.
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589816 tn?1332976771
@horselip- I'm waiting on a call back from an endocrinologist back at home to see if they can fit me in..the opthomologist appt is set for august 1st. Thanks for all the prayers...I sure could use them right now :D

@tiredbuthappy- I'm so glad to hear you're feeling better! I have a dermoid tumor which doesn't respond to any of the above mentioned. It's usually a slow growing tumor..but there's so little known about them that he said we need to watch it close if we decide to wait. He's leaning more on the W&W side if we can because of the risk of complications in the surgery. It's absolutely the locations like I was told by you girls on here before..that's the problem.
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171768 tn?1324230099
I'm happy you found a surgeon that you trust! Still, I would encourage you to get a second opinion, if you haven't done so already. If surgery is risky, you want to learn about all of your options. Would radiation, gamma knife, cyberknife, or anything else be an option? What are the risks and benefits of each? Some neurosurgeons specialize only in physical surgery, so that is the only option they discuss. Others are trained in these other areas as well.

Does this type of tumor grow slowly or quickly? If surgery may be inevitable since you are so young and have a long life ahead of you, you may want to just do it before it becomes more involved and complicated. Definitely keep us updated, and if you need any info about craniotomy or recovery please ask. By the way, when I last responded I mentioned extreme fatigue. I have turned a corner, and now at 2 1/2 months post op, I am functioning at near normal as long as I stop and rest midday (thank goodness for naptime!). I can even keep up with the kiddies on most days =) So, while being life-altering, brain surgery is not life-ending.
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596605 tn?1369946627
Hiya Steph-
It sounds like you did get a lot of information! Good.

So are you going to see the opthamologist and endo on this trip?

I assume that the endo  will run all of the pituitary labs then to check your hormonal function.

Do try to get copies of everything! Even the pit MRI can be put onto a CD rom disc, you ask the tech when you are getting the MRI. That way if you want to send it around to other surgeons for a second opinion you have a copy to send.

Continuing to send positive thoughts...and thanks for the update
Horsey
Helpful - 0
589816 tn?1332976771
Sorry it took so long to update..things just didn't calm down until now. The baby is settled in and finally getting some good rest so I have a few minutes.

LOVED Dr. Walsh. He was very informative and seemed to really care. He had lots of knowledge about this tumor which is hard to find. I even asked one of the young neurologist's here yesterday about it..and he said that it's so uncommon that he knows nothing about them. He is sending me to an opthomatrist and endocrinologist and also ordered another more pituitary specific MRI asap so he can get a better look. As I was talking to him he was amazed at how much I knew (thanks to you girls and a few others) My mom went with me and also had the same impressions of him.
As for the surgery...he said it is very high risk...but it's also risky to leave it in. It would require a craniotomy due to it's location and entanglement. If the specialist he's sending me to say that it's affecting me he wants it out now...if they say otherwise he said it's up to me if we remove it or W&W with frequent MRI's.  
Helpful - 0
589816 tn?1332976771
I'll try to update when I get home..I have to get ready to leave Tues for Vanderbilt with the baby for 4 days..so it's going to be a crazy day :D My appt's at 1 so I should be back by late afternoon
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Avatar universal
Good luck! It is both exciting and scary at the same time! Let us know how it went!
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589816 tn?1332976771
thanks :D I'm excited and scared at the same time..I really need some answers though
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596605 tn?1369946627
Sending positive thoughts your way...
xxHorselip
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589816 tn?1332976771
My appointment's day after tomorrow..getting more nervous now.
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Avatar universal
Do take someone with you to the appointment. I know I got so overwhelmed that I could not remember everything - or maybe it was my dang tumor... but it was just a lot to take in!
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171768 tn?1324230099
I have the person with me at the appoints write down everything the NS says. I actually also recorded all of our meetings, with their permission. I have never had to go back and review something, but I liked knowing it was an option.
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589816 tn?1332976771
Same here with my mom :D I'll be at Vanderbilt with the baby from the 12th thru the 15th so my mom and DH are trying to arrange their schedules for the 11th too now. I'm hoping the kids can all stay home with dad that day so we can really pay close attention. I was on an epidermoidbraintumor site and they had an entire FAQ section to ask the NS...well now their site is down. I'm going to keep trying though.
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596605 tn?1369946627
Good luck with your appt on the 11th! Be sure to make a list of questions and bring someone else ,if you can. I usually take my mom with me to appts. Then we go out for lunch and recap the appt afterwards. She often picks up on things that I don't and vice versa.
Keep us posted.
Horselip
Helpful - 0
589816 tn?1332976771
I have an appt at UT medical center in Knoxville on the 11th...my insurance will cover it as out of network. His name is Michael Walsh. I'm about to start doing my homework on him. In the meantime I'll be making more calls.
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Avatar universal
There are places that do - and I would look for a place that does with an excellent surgeon - like Horse said, that decision WILL impact the rest of your life...
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596605 tn?1369946627
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.
Helpful - 0
589816 tn?1332976771
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.
Helpful - 0
596605 tn?1369946627
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
Helpful - 0
589816 tn?1332976771
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.
Helpful - 0
Avatar universal
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!
Helpful - 0
171768 tn?1324230099
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.
Helpful - 0
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