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How worried should I be?
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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
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657231_tn?1390151580
It is not that big but like real estate it is location location location...

I would also consult the surgeon here to get his opinion. I would not just see any surgeon but one that does a lot of endoscopic surgery and is experienced with the type of tumor that you may have.

You may also want to go to a pituitary center - they would be able to have the type of surgeon you need as well as any testing to see if you hormones are being effected.

Not just any neuro-surgeon can do this surgery...
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589816_tn?1332980371
Thanks for a response! I really am looking for any help in understanding this or where to go from here. I will look into a pituitary center..as I haven't heard of one before. I will also do my research on the neurosurgeons here now. Not sure if this will help in anything, but I'll post below the location stated in the report.

Findings: There is a 2.0 x 1.2 x 2.0 cm mass in the suprasellar cistern which demonstrates intense increased signal on T1-weighted images and intermediate signal on FLAIR and T2-weighted images and no significant enhancement. The mass appears to be separate from the pituitary gland, and anterior and separate from the hypothalamus. The mass extends towards the right orbital apex and appears to partially encase the right supraclinoid carotid artery. The mass appears well circumscribed and there is superior displacement of the optic chiasm but no definite involvement of the optic chiasm or optic nerves.
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Part of your tumor is probably inoperable... that part that is wrapped around the carotid artery is something that most surgeons will not touch that part so it may need radiation. For that part, you need an excellent surgeon who uses endoscopic tools so they have great line of site.

Pituitary centers are generally at large universities or larger hospitals. There are some doc lists in the health pages that I posted.
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589816_tn?1332980371
I have 4 kids..12,11,7 and 11 months...my 11 y/o has Aspergers and ADHD..and my baby is a special needs baby who require extra attention. He has delayed myelination which caused lots of problems and they didn't even think he'd make it..and if he did he would probably never walk or talk. With TONS of therapy and lots of work he's become a true miracle (as stated by many of his 12 doctors) What I'm getting at is...is this going to limit me do you think? If I have to have the surgery what kind of recovery might I be looking at? I know nobody can tell me exacts at the moment but I think it would help me if I had an idea of what I'm facing.
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Endoscopic surgery in the hands of a good surgeon will make the surgical recovery happen much faster but while you may not have scars (they often go through the nose, but may not with you) it still may take a couple of weeks to a month to get off surgical restrictions. After surgery you usually cannot lift a certain amount and bending over is a no no for a while... even straws (at least it was for my surgery). But I felt ok.

If you have a hormonal issue, which is does not sound like you do - then recovery can be longer. Radiation takes longer. But the doc really has to see what type of tumor it is - the MRI was not definite.
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596605_tn?1369950227
Hiya there-
Try not to be tooo worried. Hard I know, I've been there. A lot of this is out of your control and you will need to accept to some degree that what will happen is what will happen.

What you can control though, is picking the best possible surgeon.

If you research your condition and how the surgery is done you will better understand what the transphenoidal using an endoscope procedure, is all about. If you look at pictures of the anatomy of the area around the pituitary gland and get to know the main structures. There are videos of this procedure on the internet. They are the real deal, and not for the sqeamish. It just depends on how you are personality-wise and how deep you want to get into it, info wise.

Some people talk to the surgeon, get their questions answered then and then have the surgery scheduled end of story.

Usually the surgery, if a routine pituitary tumor is being removed through the nose takes just a few hours. Your tumor is not a simple round pea and so the surgery will probably take longer? guessing 6-8 hours?. It is close to the carotid artery and it is of an uneven shape: so the surgeon will need to be very careful about removing as much as possible while causing as little damage to you as possible.

If there are no complications from the surgery you will probably be in the hospital for 3-4 days.

Once you are home from the hospital the first five days you should plan for mostly bed rest and have some help around for your kids.

After that you will get back on your feet slowly but surely. You will still be healing but you will find that physically you will be back to your old self within a month or so. Things that some of us can come down with after the surgery are sinus infections and/or small csf leaks that heal themselves. So I would read up on that ahead of time to be prepared.

Your hormones might need lifetime work after the surgery and when they off they can affect how you feel. This part is very individual form person to person.

You may come down with Diabetes Insipidus which is something that you should read up on. It might be short term for just a few weeks or permanent depending on the damage done to your pit gland. But in short your pit gland stops making the hormone that tells your kidneys to concentrate your urine. So you are very thirsty and become a pee machine. There is a medication called desmopressin that replaces the hormone. It is tricky and at first you need to weigh yourself and monitor all of your fluid intake and output. You don't want to become overhydrated or underhydrated as both can land you back in the hospital.

Most likely you will lose some if not all of your Pituitary function but that can be dealt with with replacement hormones and a good neuroendocrinologist. This takes time. It took me about two years to get it "right",

That's what I can think of right now- Others might have more to say or maybe they had a different experience than I. I hope that this helps. I do not want to add to anxiety and went back and forth on whether to reply to your post.

Horselip
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589816_tn?1332980371
I've been having trouble with my internet and wasn't able to respond yesterday..I had a CT done Monday which from what they told me now they're almost positive it's an epidermoid tumor. I tried researching it, but there really isn't that much information on those in the brain. I've joined a FB group in order to try to get some info and hope to learn some more about this particular tumor. My dr is sending me to get my eyes dilated on Friday since I'm having problems with my right eye..not sure what they will make out of that.

Horselip- I'm very glad you replied! Thank you..I feel better the more information I get. It might not always be exactly what I would want to hear, but I'd rather be totally armed ahead of time.

rumpled- No text book can take the place of personal experience so thank you for all of the information you've given me! I'm relieved that I've found a place I can go with my questions.
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171768_tn?1324233699
I do not have experience with your type of tumor, but I did have a brain tumor removed 7 weeks ago.
~Get several opinions! I saw 3 neurosurgeons, and they each had a different opinion on risks of surgery, and approaches varied too.

By the way, my tumor did completely encase the carotid artery, and they were able to remove the entire thing. My vision was also effected, as it displaced the optic nerve significantly. If your vision is being effected, and the cause is a tumor, I would suggest you see a neuro opthamologist, and not just a regular eye doctor. Their technology and expertise can give insight to how much of an impact the tumor is having on your vision.

I can speak about recovering from brain surgery while caring for children. I have 2 little ones, an almost 2 yr old and almost 4 yr old. My surgery did involve a craniotomy. I do not know about endoscopic surgery, but wonder if it would be possible given the dimensions of your tumor (sounds like it may be irregular- mine was), and given that it is so near the optic chiasm. A surgeon would be able to give you a better idea of which approach is safest. Anyways, my biggest complaint post surgery is fatigue. It is extreme, and I have needed a lot of help with my kids. It is not something that you can just push through, and if you do try to push through it instead of resting, you pay for it dearly. Still, it's not as bad as I thought it would be. While I am frustrated with not being able to care for my kids fully on my own, I am improving daily and know that I have to take this time to heal so that I can be there for them long term.
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657231_tn?1390151580
Ah yes, fatigue is a huge issue... even my cousin with a thalmic tumor has that as well... Do talk to a few surgeons and ask questions on approach, technique, and get things out that may or may not bother  you (some use catheter, some do not, some use packing, some do not, some move you out of the hospital asap, some keep you in longer etc.).

TBH - your surgery was an open surgery or endoscopic (they call both a craniotomy!)? Usually with endoscopic, they will chip away around the carotid but they may not be able to get it all...but if yours was open, I could see that they could.

When I push, I get sick... it bites...

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171768_tn?1324233699
sorry- it was open surgery. 8 inch incision. i am relieved they removed it all, although I was told that a person can live with a tumor wrapped around the carotid.

I have read that fatigue is a major issue with all kinds of brain surgery. Anesthesia will have effects, and while a person can rest other parts of the body after surgery, you can't give your brain a rest. So, it takes a lot of time to heal.
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589816_tn?1332980371
Okay..I know this is probably a silly question..but I haven't looked it up yet..what's is the optic chiasm?

I'm really happy to be getting all of this information that you all have offered! I had my first surgery when I was 27, it was a tonsillectomy and turbinate reduction. 9 days out I woke up drowning in blood. I had a stitch cut an artery in my throat..and had to be rushed into emergency surgery. Soooo my experience with what was supposed to be a routine surgery turned out not so well...so I'm sure when it comes time that I'm going to be way more worried about it than I am right now. Having an idea of what to expect when that day comes is already helping.
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Basically the place where the optic nerves cross. It is near the pituitary and near the carotids. You will have to look on anatomy sites and compare your films to see. I was supposed to get the same surgery you had as an adult (yikes on complications) but they said I was too much of a bleeding risk... go figure. That is a horrible surgery for an adult - brain surgery is way easier! LOL...

TBH... dang - us pit people end up with radiation if we have anything around the carotid or in the cavernous sinus! I wonder why the disconnect? It must be tumor type...Although yours was larger and more aggressive... it just must be the hormones of the pit one they are after in the pit case...
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171768_tn?1324233699
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.
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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!
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589816_tn?1332980371
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.
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596605_tn?1369950227
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
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589816_tn?1332980371
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.
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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.
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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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589816_tn?1332980371
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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596605_tn?1369950227
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
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589816_tn?1332980371
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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171768_tn?1324233699
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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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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589816_tn?1332980371
My appointment's day after tomorrow..getting more nervous now.
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596605_tn?1369950227
Sending positive thoughts your way...
xxHorselip
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589816_tn?1332980371
thanks :D I'm excited and scared at the same time..I really need some answers though
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Good luck! It is both exciting and scary at the same time! Let us know how it went!
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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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589816_tn?1332980371
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.  
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596605_tn?1369950227
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
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171768_tn?1324233699
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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@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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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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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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657231_tn?1390151580
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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