Aa
Aa
A
A
A
Close
Avatar universal

pituitary tumor, schwannoma or epideroid cyst?

I have been having problems for about a year come to find out I have a tumor. My first MRI no contrast said 2.4 by 1.6. Three weeks later with contrast it was 2.6 by 1.8
It scares me because it grew in a matter of three weeks between MRIs or is that just because the contrast makes things clearer.? I guess I'm just lost with this whole situation and very scared as I'm in 26 and have three kids that depend on.
18 Responses
Sort by: Helpful Oldest Newest
Avatar universal
I am a bit loathe the accept the whole PCOS thing as been thrown out as an excuse too easily without any real substance behind it.

I hope you still see an endo anyway.  
Helpful - 0
Avatar universal
Hey y'all. Seen the neurosurgeon yesterday. None of the three tumors the MRI doctors thought. The tumor is close to my left ear and he thinks its a nueroentric cyst which is rare. Or a atypical epideroid cyst/tumor. He doesn't think its the cause of my problems. So if my labs come back normal then he will monitor it and I will have another MRI in 6months. He thinks I probably do have pcos which is causing all the hair skin weight issues. So I'll be seeing another doctor for all that. Thank you all for the support. All this doesn't explain my eye issues so back to the eye doctor too!
Helpful - 0
9197017 tn?1429016816
Ditto what Rumpled said.
Please let us know what the neurosurgeon says.

I'm curious:
- is the tumor/cyst pressing on any cranial nerves
- what is the neurosurgeon's history with (1) this type of tumor/cyst and (2) tumors/cysts in your brain's location
- Which neurological & physical functions might be affected by the tumor?

Support groups in CO: (I hope it's ok to post link to external website)
http://biacolorado.org/programs-and-services/support-groups/
Helpful - 0
Avatar universal
Being overwhelmed in the beginning is... Standard. It is all new and scary. Plus everything you read sounds like gibberish and the stuff you understand does not sound good.

Please also realize that any board is skewed to problems. People that have no problems don't go posting or seeking info as all went well, so it can seems like everyone had problems. It just is not that way.

It takes a while to learn the med-speak, then adjust where you learn that ok, this is this, this is that, and okay, I can deal with this. You do need to find a coping mechanism IMHO be it church/temple, friends, music, crafts, reading etc. in other words a light easy distraction that is good and helpful and supportive.  

Even for my little tumor, I found that I had to prepare where I put my clothes, needed extra lip balm (why lips chap so much more after surgery!) and figure out meals... Even stockpile gift cards and menus if that helps out.

I was tired post op and your hubs needs to be prepared to take over, and when he needs a break, helpful friends and relatives to help out.  
Helpful - 0
Avatar universal
I'm sorry I thought she ment original size, cm or mm.  How did you get through it without being too overwhelmed?  Thanks for all the imput I should start making extra meals now to freeze. That way they just have to be unthawed.
Helpful - 0
Avatar universal
A 2cm change is a big change then...

Surgical recovery can take about a month. Figure on not being able to bend over, pick up etc. Start planning meals, clothing, shoes etc. so you can be able to slip things on and not bend over.

Pituitary surgery has the further recovery of hormonal recovery - that can take well... it never ends as you always have to monitor. You have to take meds for a while after surgery and some can be temporary, but some may be forever. I ended up with most being forever (but that was having the other glands removed, not just the pit surgery). You have to know the type of pit tumor and that helps know what will happen - testing testing testing.

You really do need help post op - your husband should get help too like a helper, neighbor, mother friend etc. It can get stressful. Just anesthesia just wipes you out and makes you so tired for a while.
Helpful - 0
Avatar universal
Thank you rumpled all your information has helped. Exactly what I thought the doc was just using a cop out. Thank you.
Helpful - 0
Avatar universal
It is centimeters. Not mm. My husband is going with me. I have a few questions. As I think of more I write them down. One of my main concerns is how quickly will I be able to continue with my routine as my two youngest are 3 and 1. I know a tumor in the head is serious but i'm optimistic that after a few weeks recovering I'll be back to normal. How are things for you what kind did you both have? At what age are your bodies back to normal now?
Helpful - 0
Avatar universal
I am in the Us I just moved to Colorado so I will be going to a pit center in Denver. I found the doctor myself. How would I find a support group near me? Thank you both you have made my past days better
Helpful - 0
9197017 tn?1429016816
Hey, rumpled--I just noticed you're in Northern NJ--so am I!!
Helpful - 0
Avatar universal
It sounds like, and I cannot tell acurately, that you have two potential issues, and they are close together.  They may or may not be related.

I can comment a lot on the pituitary issue as that I have myself. Empty sella simply means the CSF (cerebral spinal fluid) has filled the sella turcia where the pituitary sits. The pituitary could be there, somewhat squished, or fully squished.

I would see a pituitary center for it - and if your tests are not at 8am fasting, and not done properly (get copies) you have to get more. Lab error and doc error held me up for  years. ACTH is a fussy test, and other silly things like time, messed me up bad.

Your symptoms sound consistent with a pituitary issue - more like Cushing's or a growth hormone issue.

The pituitary area is just in front of the pons (dang auto-correct! don't worry about it... lol) so it may be the lesion could be the cause of both issues, or they are two separate issues. I have had my pit buddies have a meningioma come up later... or some tumors just get weird and invasive.

BTW having PCOS does not rule out a pituitary disorder - you can have both or more likely the doc is just a using *cop out* diagnosis...
Helpful - 0
9197017 tn?1429016816
OMG--how could I forget to tell you... (brain fog today!) I had a cyst in the right pons.

I assume your tumor is 2.6 mm, not cm?

There isn't a ton of literature about tumors in the pons. But there is some to be found.

Do you have a list of questions for the neurosurgeon?
Is someone going to go to the appointment with you, to help take notes and  help you answer questions in case you feel anxious?
rpw
Helpful - 0
9197017 tn?1429016816
Thanks for responding. I really feel for you.
It's got to be a challenge having the hormone-related symptoms as well..hair, nails, etc. All our bodies want is to have all of these symptoms in balance!

Are you in the US? Where are you seeing the neurosurgeon? Was he recommended to you? If you were in the NY area, I would invite you to the Non-Malignant Brain Tumor Support Group. They are a wonderful resource.
Rpw
Helpful - 0
Avatar universal
*right
*pons

Helpful - 0
Avatar universal
The MRI with contrast says. Differential diagnosis, includes an epideroid cyst o. The basis of a small amount of restricted diffusion. A schwannoma is also in the differential diagnosis. Meningioma is less likely because of lack of displacement brain by the tumor.

I haven't discussed mris with my doctor. I see the neurosurgeon Monday.
For about a year my symtoms have been. Hair loss,weight gain,excessive hair growth. Sex drive , skin ,acne ,nails are not normal, I'm also insulin resistance. Abnormal periods( which my whole since aunt rose came I'm like clock work). My regular doctor says I have PCOS but she cannot do anything about until we have this figured out. But the only reason she referred me for an MRI is because I went to the eye doctor I have loss of peripheral vision. And my Rx has changed dramatically. All my labs for extra hormones came back in the normal range except for my sugar and being insulin resistant. Thank you all for the help. Its helps me to know other have been through similar situations. I haven't had any real talks with the doctors about this. I started going to my primary Carr manager as the army calls them in January. I seen here twice she said I have Pcos. I seen the eye doctor once which he pointed the PCM towards having an MRI. After those results I've been referred to a pituitary center in another state as my husband has retired.
Helpful - 0
Avatar universal
Well I have the reports for the MRIs I haven't had a discussion with any doctor about them I've just read them my self. They say , There is an extaa- axial tumor in the eight paracentral cistern abutting the anterior surface of the medulla and lower portion of the pins. Further evaluation with contrast enhancement recommended. Flattened pituitary consistent with empty Sella. The cerebellar tonsils protrude below the level of the foramen magnum constituting benign tonsillar ectopia
Helpful - 0
9197017 tn?1429016816
First off, take a deep breath. Receiving results while waiting for a discussion with a specialist can be unnverving.
Do you have an appointment scheduled to discuss the results of the MRI.

I agree with what rumpled said about the technology. The differences reported don't necessarily reflect an actual change.

Where in the brain is the tumor located and what kinds of symptoms are you experiencing?
I wish you well. Keep us posted here.

rpw
Helpful - 0
Avatar universal
A change of 2mm is not a huge change (I am a patient though) and can be caused by either the contrast, a different machine, or slice changes... as in MRIs can be set to do 3mm or 5mm slices - so guess what, they miss sections and small size changes can be what falls in the slices.

I would get a copy of both MRIs. I would also read the reports. The scans can tell you if they think it is benign or cystic or hopefully not anything else... then you have to see the location as that is telling. Some locations are more worrisome than others.
Helpful - 0
Have an Answer?

You are reading content posted in the Brain/Pituitary Tumors Community

Top Cancer Answerers
Avatar universal
Northern, NJ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Here are 15 ways to help prevent lung cancer.
New cervical cancer screening guidelines change when and how women should be tested for the disease.
They got it all wrong: Why the PSA test is imperative for saving lives from prostate cancer
Everything you wanted to know about colonoscopy but were afraid to ask
A quick primer on the different ways breast cancer can be treated.
Get the facts about this disease that affects more than 240,000 men each year.