MRI showed cyst in pituitary gland 13 y/o F

[pepahs]

i posted yesterday but have not heard from anyone.  please help, my daughter is wasting away.  she has been vomiting anything that she eats or drinks since Jan 6. prior to Jan 6 she was healthy, a great eater, and A-B honor roll.  it came on all of a sudden, no warning signs just started.  we have seen the pediatric GI doc and had all the tests done and found out it is not a gastric problem. when she started haveing severe headaches in Feb he sent us for an MRI of her brain and CT of her abdomen, both with and without contrast.  CT came back normal but the MRI showed a cyst in her pituitary gland. the radiologist said "increase in size of bright spot located in the posterior aspect of the pituitary glad that normally represents the neurhypophysis noted.  in the present exam the anterior portion of this bright spot probably represents a hemorraghic par intermedia cyst or a cyst with increased protein contents".  since then she has been hospitalized for a week for iv fluids and nutrients.  she gained 3 pounds after the iv (she was in hosptial for a week) and she had another MRI of the brain.  they also had a psychologist come talk to her and he ruled out any eating disorder but did say she may be depressed now (she has never been depressed before i can imagine all that is going on is making her depressed). the neurologist she has seen is not helpful at all; did not return calls from us or the nurses while she was hospitalized.  
the symptoms she has go along with the Rathke's Cyst symptoms: vomiting, abnormal weight loss, headaches, vision changes, menstrual changes, dizziness.  her blood pressure has been very off also 90's over high 50's low 60's, which most people think is good but it is not her normal BP (110/70).  she is weak, she cannot go to school because of the symptoms, and I am at my wits end trying to find help.  any advise/suggestions are greatly appreciated.

[ggreg]

All,
Good grief, I just stumbled over this group of posts.  I am so sorry that you ladies are having to put up with no treatment for your daughters.  I am truly outraged.  All of you have got to find someone who will operate on the pituitary gland, for crying out loud.  I don't care what the endo or anybody else said.  It is absolutely completely abnormal for their awful symptoms to go on this long!  I mean, if it were just a few weeks or something, maybe, and if the symptoms were mild, fine.  But you guys do not fit that sort of "oh, this is normal in teens" thing.  

What you've got is perfectly okay kids that are now in a ruinous state that is only getting worse, and in fact the abnormal pituitary gland has gotten so bad that their entire health situation is in the danger zone.  What really offends me is the docs are treating them symptomatically, when the obvious solution and in fact required procedure is to operate on the pituitary, particularly when the op is not all that complex.  But the risks are high, so perhaps that's why all the waiting around, but at the cost of your daughters falling apart.

I would recommend that you take your girls to your state university medical hospital or one in a nearby state in a university setting, or if you want, research online the top ten best hospitals who have surgeons who do this procedure often, and go to one of those.  It will be well worth the time and trouble to find an expert who is willing to do the operation on the pituitary, and who recognizes the serious ramifications of this gland getting totally out of control.  

You three have tried very hard to go along with all the moderate treatment I can stand, and so I want you guys to please take this thing by the horns and demand the operation that your children so desperately need.  And the reason I am upset is because I have witnessed and personally experienced as an older person a lot of miscommunication amongst the medical profession on account of all the private insurance interference and shackles, so I do not mind and in fact feel compelled to help you as best I can.  God speed.
GG

[lys68]

my daughter is 4 years old. She was diognosed with a cyst over a year ago, since that time she has had no treatment for it even though she has several severe symptons. She has numerous other health problems so the doctors assume her problems are caused from them. She has severe pain in her legs and joints she screams and cries all the time. She gets bad headaches and is about to have a second surgery for her eyes. She has seen two neurologists among other doctors but I have gotten no help. I am so sorry for your daughter and know some of your frustration. I wish you the best of luck please know you are not alone.

[pepahs]

look up the side effects of lyrica.  there are a lot more than just what is listed when you get the med. see if one of the side effects is seizures (unless of course she may have had seizure prior to the meds).  i know it is an anti-depressant that happens to help with the physical symptoms that depression can bring on but it is also used for treatments other than depression, as the dr. see fit also called off-label use.  there are lots of warnings regaring teens and anti-depressants (whether he gave it to her for depression or not the ingredients are the same, ya know?)  if it helps her though great.  reglan has not done much but cost a lot of money; along with the prevacid-that stuff is pricey! we are still giving it a month too, i know sometimes it can take a while for meds to really start working. let me know when your week is up because our first week just ended.  i am trying to get the results of all the bloodwork she had, poor thing hates needles and has been poked so much i lost count.   good luck!

[kkrylee]

My daughter is 16 yrs old and has missed 21 days of school since Jan due to doctor visits, test, and feeling bad.  She has seen 2 neurologist, 1 pediatric endocrynologist, opthamologist, internist, & cardiologist. Everyone has ignored the pituitary because the endo said it is okay.

She has had more blood work than I can count, Tilt table test, chest xrays, MRI & MRA of brain & cervical spine, 2 EEGs, EKG, Echocardiogram, vision tests, & spinal tap.  Other than Orthostatic Hypotension and a positive Babinski response, the tests are all okay.  It is so frustrating knowing that you can't help your child.

In order to see the photos, just click on my member name then click on the tab that says photos once on my member page.

I would see both and endocrynologist & a neurologist.  I have found that the specialist looks only at his field of medicine and does not notice or consider anything that is not within his area.  I finally had my daughter seen by an internist that I heard does not give up until he finds a diagnosis and is very devoted to his patients.  He is the one who sent her to the neurologist and cardiologist.  She has already seen the endocrynologist before we saw him. Perhaps, starting with a good GP or Internist and then getting them to have each specialist (neuro, endo, gastro) see her to check for their area of expertise might be the best way to go.

I will try to keep you updated if we get any answers.  Currently we are on hold waiting to hear the results of her last EEG because it now looks as though she may be having seizures.  And we have her on Lyrica (search internet for info on this med) and I think that it may be doing some good as far as general feeling and fatigue even if her symptoms did not go away.  The neuro wants to give this med a full month to see if it helps and we are a week shy of a month on it.  Levsin helps her alot with the nausea, but she does not have the vomitting.  Nothing has worked for the headache and they have tried many migraine meds.

Stay in touch,

[pepahs]

thank you so much for replying.  i will ask for a CD of the MRI she had.  her cyst was 3mmX5mm which is not huge however if it is pressing on the right spot in the pituitary (usually anterior) it doesn;t matter how large it is.  the report says to have her re-checked in 6 months but if i wait that long i fear she won't be here anymore.  from what i have read, and my eyes are crossing from it all, it does not always effect the hormones.  
my daughters headache is pretty constant on the top front of her head but, according to what i have read, a rathke's cyst can cause sphenoid sinitus, which my daughter has, becasue it is so close to the sinuse (or something like that).  i am sorry your daughter feels so bad but i am glad i found someone else who is going thru what my daughter is going thru and i truly do not mean that in any horrible way at all.  the GI doc is still treating her for acid reflux which she doesn't have according to his tests.  he gave her reglan because he said it helps food digest faster so maybe she can keep more of it in her stomach.  i am very new to this forum and i don't know what to do to get to your member page.  do i just click on your name above?  thank you, thank you, thank you for responding.  again from what i have read most women have this type of cyst with no symptoms.  but if there are symptoms, again from what i have read, the best course of action is to drain the cyst.  they do not have to open the skull to get to the gland; they can go thru the nasal cavities to drain it.  as much as i don't want them messing with her brain (technically it is not a part of the brain but a little sac off of the brainstem from what i have read) i wish they would drain it and see if her symptoms go away.  most times after it is drained everything goes back to the way it is supposed to, from what i have read.  i know i keep repeating that but i am not a doctor either and i don't want to get into trouble.  have you seen a neurologist in addition to the edocrinologist? will it make a difference which one to see?

[kkrylee]

I am not a doctor.  My daughter has all these symptoms except the vomitting.  Her pituitary gland shows on MRI as a large (9mm) & globular in shape with a suspicious area on the posterior gland.  But when we saw an Endocrynologist at Children's Hospital, he state that this is normal in a teenager.  We have had every possible test done and cannot find any other cause for her symptoms which are extensive and progressing weekly.  It has been 6 months now with no answers.

She also has Orthostatic Hypotension ( the extreme drop in blood pressure upon standing or sitting) which was determined by a Heads Up Tilt Table test.  She has constant (24/7) headache pressure at base of skull, temporary blindness lasting seconds, blurred vision, peripheal vision loss, constant nausea, fatigue, dizziness, numbness/tingling in face and right side of body to name a few of the symptoms.   I would be very interested in seeing your daughter's MRI of the pituitary gland to see if it also large and globular.  I still wonder if the pituitary gland is my daughter's problem even though the Endo ruled it out because her blood tests for homone levels were fine.

I don't know how this all works, but I will put my daughter's MRI on my member page to see if you can see it.  They gave me a CD of the MRI and that is how I have the images.