Possible pituitary adenoma but can't have MRI

[GailFiddler]

I am 58 and having a CAT scan in 3 days to determine if I have a pituitary adenoma.  My symptom is atypical and bilaterally symmetrical areas of peripheral vision loss in my eyes (in temporal quadrant).  I have small wires in my maxilla from jaw surgery 30 years ago, probably stainless steel.  Due to the undertainty of the type, shape, size, and location of these metal pieces, I am not having an MRI.  Is it possible to diagnose an adenoma with just the CAT scan?   Is there any way to ensure ahead of time that these metal bits won't do harm when exposed to strong magnetism?   If the CAT scan is inconclusive, what are my options?
Thanks for any help.
Gail  

[rumpled]

I am glad you found your diagnosis. I hope that you remain stable so that you have quality of life. Good luck!

[GailFiddler]

Thought I would close out this thread with my final diagnosis which I just received yesterday.  I do not have a pituitary adenoma.  I have an atypical form of RP (retinosis pigmentosa) called sector RP.  This retina problem is what is causing the bilateral problems in my peripheral vision.  Luckily, this form tends to be stable, just affecting one slice of the peripheral vision.  It is genetic in origin although none of my family members has it (at least not aware that they have it).   If this condition remains stable, I can certainly live with the symptoms I have now.  
Thanks again for all the help on this forum.
Gail

[rumpled]

Inferior Petrosal Sinus Sampling... they thread catheters from your groin to your brain (in your petrosals) on both sides and give you stuff to make your pit give off ACTH and then test if the acth is higher in the petrosals or in your arm at timed intervals to see if there is a tumor up there giving off more acth.

It sounds horrid, but it was not as bad as it sounded.

[GailFiddler]

What is an IPSS?

[rumpled]

They can be negative and you can still have one! I still have one and my MRIs show nothing. I also have eye issues. An IPSS confirmed my tumor is back.

A radiologist can miss it, if the MRI was not done properly... it can be so many things - lots of times if a surgeon looks at the scan, they can see more as they know what they are looking for.  This may not be over for you.

[GailFiddler]

The MRI was negative for a pituitary adenoma.  I guess you would have to say this is good news, but I still need to find out why I have the defects in my peripheral vision.  More diagnostic tests are in my future.  I appreciate the support and advice I have gotten from this forum.  Good luck to all of you out there who are facing various challenges regarding a very precious and complex part of our bodies.  
Gail

[GailFiddler]

Had my first MRI without/with contrast today.  The surgical wires in my jaw were no problem at all.  Being small, imbedded in bone, and made of stainless steel, they didn't even cause artifacts in the area of interest  (Whew!)  Results should be available by Monday or Tuesday.  Obviously, I am anxious about what the report will say.  I'll post back when I know more.
Gail

[GailFiddler]

I now have the MRI scheduled with a different facility, and it will happen this Friday.  I checked with the lab and their protocol is to do the dynamic MRI for a test of pituitary adenoma.  So I'm glad for the delay to straighten out the understanding.  
I appreciate your pointing this out.
Gail  

[rumpled]

I can tell you that well, you need to find another doctor. Your MRI was about to be done improperly so in a way, it was good that it was goofed up.

A proper pituitary MRI is called the dynamic protocol. It should be done both with and without contrast (hence getting the contrast before is incorrect) as well as you should get the contrast WHILE in the MRI so that they can take the pictures during the injection so that they can take pics of the uptake.

A few weeks should not matter, but it should be done correctly! At the moment, 40% of tumors do not show up, doing it more accurately will allow the best chance.

That is another reason why you should get an endo to order the test as they can make the order properly.

[GailFiddler]

A frustrating day.  My Drs decided I could have an MRI after all.  They x-rayed my head to take a look at the small surgical wires in my jaw.  Due to their small size and location (imbedded in bone), an MRI would be safe for me.  I was scheduled today to have an MRI with contrast but they failed to tell me to come 1/2 hour early to get the injection prior to the MRI.  Now it may not happen until the 25th.  I was so ready to have this MRI, that I cried when I found out the scheduling problem.  I'm better now.

My question is this:  Can this test wait 3 weeks?  If it really is an adenoma, how much am I hurting myself by delaying the process by this much (aside from emotionally)?  I plan to talk to the ophthamologist tomorrow morning to see what his view is.  The defects in my peripheral vision have been very slow progressing over the last 3 years so maybe a few more weeks won't matter much.
Gail    
'

[GailFiddler]

Well, today didn't go as planned at all.  The retina electrical test I thought I would I have today has been scheduled for September.  Today was just the examination and consultation.  I was impressed with the doctors in this practice.  

The CT scan I thought I would have will now be an MRI.  They took two X-rays today of my head to locate the bits of stainless steel in my jaw.  The head radiologist said based on their size, location, and composition, an MRI would be safe for me, and an MRI was essential to get a decent chance at a diagnosis.  Soooo, the MRI will happen Monday if they can get the new prescription from the ophthamologist.  I am happy that an MRI can be done because it is much better information than a CT scan.  I'll post when I have more.
Gail  

[rumpled]

Yes, a neuro-opthomologist will probably take over the eye tests and continue to monitor the nerve and the visual fields.

Hopefully the CT will show something, but you need an endo to run tests - it is the hormones that will show what is up, usually. Pit symptoms are subtle, hence why they are often missed. They can range from depression to acne, stretch marks to high cholesterol to messing with your other hormones.

[GailFiddler]

I have had a visual field test and an optic nerve test photographs and examination every year for 4 years now.  I have peripheral vision defects in both eyes; just one quadrant is affected.  There has been very gradual progression of the defects. I think the retinal test and CT scan are the right next steps.  I have tremendous confidence in the Dr. ordering the tests.  We will discuss referrals once we get the test results.  He has already said he probably wouldn't be my long-term eye doctor because he specializes in glaucoma only.  I'll post the results when I have them.  
Gail    

[rumpled]

Are your visual changes with changes to the peripheral vision? That is usually pituitary.

It is strange that the first move is a CT and not a neuro-opthomologist which should be the first move IMHO as they can check the nerve and do visual fields. I go there a lot.

Thanks for the kudos.

[GailFiddler]

Thanks so much for your quick response.  I don't even know if I have a tumor yet, much less what type.  My only symptom is a symmetric segment of peripheral vision loss in my eyes.  I don't seem to have any hormonal imbalances, at least not that I am aware of.  No headaches.  I feel fine with normal energy levels, appetite, and body weight.  The CT scan is the first step in a diagnosis.  I am also having a retina test to rule that out as a cause.  If the CT scan shows no tumor, not sure what to do next.  As you say, it could miss a tumor.  The physician ordering the CT scan is a well-regarded glaucoma specialist, and he believes it is not glaucoma ('atypical' defects he said).  Once I have these tests, I will decide on the next step. I am being treated at the Albany Med Center but as you say, I may need to travel elsewhere to get an expert in pituitary tumors if that's what it is.  Is Mayo Clinic a good place to find such experts?  How about St. John's in the Los Angeles area?  This is all pretty scary stuff.  Your dedication to this forum is a real help to people like me.    Thank you.
Gail  

[rumpled]

A CT scan usually will not pick up a pituitary adenoma unless it is pretty large. Since you are having vision changes, then perhaps it may pick it up. There is no way to do an MRI with the metal there. But even MRIs can miss things.

The way to really "diagnose" is via bloodwork as it is - the MRI is just to confirm size and shape. Do you know what kind of tumor you have? There are many kinds. I had two separate secreting tumors.

Have you seen a neuro-endo, a neuro-opthomologist? Please make sure, since your eyes are effected, that you get the most skilled surgeon possible. You may have to travel.