MRI

[North48]

I am having an MRI on the 11th of May and I asked if it was a T3 dynamic and they said it was a 3T but didn't know what the dynamic was.  Will this be the same?

[LivingInHope]

Well, horselip, I had cortisone shots in the past for a shoulder injury and the first time, I had flushed face and headache, but with the second shot, I had itchy legs in addition.  Then people didn't seem to want to give me cortisone shots anymore, even though I was willing to have one and take benadryl.  The convincing would be with my PCP, if I need to enlist him to tell medicare I am still disabled (partly from migraine headaches).  It might help to have an article (thanks, rumpled on that score) to look at so he can mention the pituitary tumor might be contributing.

Yes, rumpled I guess the doc at Vanderbilt feels my tumor isn't hurting anything at present so she might just think it is an incidentaloma at this point.  I think she thought perhaps it might have affected me when I had a uterus and ovaries, but there's no way to go back and test about that now.  

A surgeon I saw in town about my hemangiomas on my liver mentioned an endocrinologist in Knoxville- I don't know if they will be who I try after my next MRI- maybe.  I live in a rural area where there is not one endocrinologist in the city.  And from one office in a city fairly close by, I was dismissed as a patient after I had already dismissed her as my endocrinologist and reported her office to my insurance and to medicare, due to their office engaging in insurance fraud- billing for testing, etc. not performed on me.  My understanding is the HMO I was with had a lawyer handling the case.  Don't know what happened about it and now that HMO was swallowed up by Humana, which is what I have now.

And the other endocrine office the closest did no tests at all but recommended I go to Vanderbilt.    

[North48]

I wish you well in your journey, that is how I look at this - a journey.  

My TSH has been at 3.? "normal" but I have the problem with gaining weight.  The last endo told me that weight gain from low thyroid does not happen.

I'm not always sure surgery is always the best route either, I wish I had a magic ball.

I wonder what Mayo would say now that my tumor has grown some and that I have developed cataracts and started headaches.  Probably the same as the dr's here in my hometown have said "it's not the tumor causing this".

There does come a time when you have to pick a really good dr and just trust what they tell you.  I have not found that dr yet in the midwest so I think I will go to California for a 3rd opinion and then I can put this to rest.

[testdeprived]

that would suck if they werent on your plans.

[testdeprived]

yeah, i went to an eye doctor and had a visual field test, and an eye exam, and he said aside from the same vision problems ive had for years, nothing's changed.

ever sicne we last talked  i saw a new neuro. this one is better than the other  i had seen, but still garbage as far as helping me.

she told me she thinks that a small tumor could cause issues, but she doesnt think mine is cause my hormone levels are ''normall''.

anyway she gave me a script to go to a guy for cyberknfe, but i opted against that. her itnent was that the guy would refuse to do it and confirm her belief that its not causing me symptoms...to ''reassure'' me  im fuine,...so i can enjoy my life and stop worrying LOL.

but even if he did agree to cyberknife,ive read some scary stories. she claims its not harmful. she didnt prescribe an mri,cause she said he would prescribe one he wanted from his facility.

i think my next step is im going to go to this antiaging doctor/hematologist i found a year and a half ago. this guy is one of those doctors that cares about his patients. ive never ben to him,but hes ordered blood work for me before through emails. im gonna go and request a thyroid workup,and all the other hormones to see what's going on with my hormones. maybe  my thyroid is the cause of my problem , maybe the doctors are right, and our tumors arent functioning symptomatically. ive had thyroid workouts done before and my numebrs were in the normal range...but according to a thyroid board they could be better. average person has a TSH of 1 i think, and mines over 3. i           struggle to put weight on.

im very glad you decided to stop giving money to mayo clinic. i just hope they were on your plans!

[North48]

Thank you for thinking of me....No, this guy was from my hometown because I had decided Mayo was not the place to be after what I'd been through with them. I have a neurologist appt on thursday so I'll see  what he thinks the headaches are from.  The eye dr didn't think my eyes were causing the headaches unless it was from the squinting due to the cataracts but he thought very unlikely.  

Hope you are doing well!

[horselip]

Hiya North48-
Have you gotten any leads on good docs in the Midwest? The Pituitary Network Association has a good listing and forum that might help you in your search. I think that Great docs are a rarity, no matter where you live. I've got a decent neuroendo, but he is in California. I'm happy to PM you his info if you want. Just let me know.
Horselip

[testdeprived]

hey north48 is this guy at the mayo clinic? im sorry to hear youre not doing so hot!

[rumpled]

If, and that is a huge if (because, in my non-medical opinion, your doc is wrong wrong wrong!) you had a non-functioning tumor, that type of tumor requires surgery because of the symptoms that I listed before. The endo is thinking of the the name (it is named badly) and not really of what the tumor really IS, and thus is not really saying what she really means - incidentaloma. BTW if you wait until your eyes are involved, you are really in deep, deep _... Why lose your eyesight over a lousy doctor? Those that finally see a doc when the eyes are involved generally have a lot of problems. And even small tumors have tons of symptoms - heck mine was only 6mm (which shrank to a shadow, ended up being as hyperplasia) and I ended up disabled. It is the disease process - they need to look at that. It is sometimes very hard to find that doctor.

Still, you have a tumor, you have symptoms. and you need a competent doctor to figure it all out.

[North48]

You are absolutely right!!!  I'm trying to find a good doctor that will give me good advise and what my options are.  It's been really hard to find them in the midwest.  I haven't heard of anyone talk about nerve impingement.

[horselip]

I don't really know if there is any point in trying to convince? I mean you have headaches and the treatment is kind of the same as you are probably dealing with nerve impingement. I've never heard of being allergic to cortisol? But yeah, the decision to push for surgery (or not) is a HUGE one. You need doctors who believe you and to give you the facts straight up with the good and bad.
Horselip

[LivingInHope]

On the original MRI,the radiologist found the tumor to measure 4 x 6 mm.  On the most recent MRI (last July), a different facility did the MRI in a different state and radiologist felt it was not as obvious as on previous 2 studies and that the tumor looked closer to 5 mm than 6, plus he couldn't get a measurement the other direction.  The neuroendo at Vanderbilt could barely see anything on the most recent MRI, though she was kind enough to show me the tumor on a previous MRI.  Makes me wonder if maybe it's one of those cysts Horselip or somebody talked about?

[North48]

What size is your tumor?  We sound like we have very similar symptoms.

I'm not advacating for surgery for my self but I would like a dr to admit this tumor could be the cause of many of my symptoms.  These doctors keep sending me on so many goose chases that haven't accomplished a thing except to waste my time and money.

[LivingInHope]

Well, the doctor that ordered the MRI where they found the tumor said something that small couldn't possibly be causing my headaches (don't live there anymore).  I believe I had an endo I was referred to there in CA say the same thing- was not cause of any of my headaches- too small.

  The neuroendocrinologist I wound up with at Vanderbilt I don't think believes my tumor is causing any of my problems & doesn't believe surgery is necessary unless the vision is affected with pituitary tumors.   She feels my tumor is non-functional, I believe.  Since the radiologist, the neuro-endo & I think my tumor might be shrinking due to the latest 1.5 T MRI, I tried to get her to recommend a two year MRI f/up.  She put 1-2 years on her recommendation.  So, then I thought maybe I'd split the difference and ask for one in 18 months.  Now with this 3 T scanner available (which it sounds like the hospital that has it says they pull the patient out normally to give the dye and then put back in... I asked if they could do it with pulling me out and they said if I wanted), well I guess I'll likely try to wait the 18 months, but it is a tempation.  

Thing is, I don't know that I could have surgery because it sounds like it requires cortisone and I may be allergic in addition to making life a stressful nightmare from the way you guys talk about life after surgery.  But I am on disability partly for migraine headaches, and it may be useful info to show a doc that there may be a connection with the tumor as a possible trigger (one of many) to some of the migraine headaches I suffer.

[horselip]

Surgi-
It is a known fact that Pituitary adenomas can cause headaches.Now whether your tumor is causing your headaches, who knows. But it certainly could be. What would be a reason to not believe this? Are you pushing for surgery because of your headaches and your doctor is not in agreement? The sucky part is that surgeries can make it worse (or better) depending on the surgeon and your situation.

Google "Pituitary tumors and headaches" TONS comes up. You can pull up a lot that you can show your doctor to prove this point. But then if the doc is so stuck on this belief, then I would want to change doctors. You should not have to be proving things that are known facts like that. It may be that the doc is simply not in favor of surgery and is just using this as an excuse.

Some docs just get so pissy when we use the internet to learn, but heck they can use it too to become better doctors. They can also read their medical journals and go to conferences too.
xx
Horselip

[LivingInHope]

I too have been told that my tumor couldn't be causing any of my headaches.  Wish I had something solid to see and show doctors, written by a medical professional they might respect that says they can cause headache, even if they aren't macroadenomas.

[rumpled]

That made me laugh out loud.
Run, run away...

Alas, yes, they think of the size (which he admits he has not a clue, not a single freaking clue) but not the effect...

[North48]

Thanks for the reply.  I suspected he doesn't know what he's doing because I asked him what the size of the pituitary was and he showed me his little finger tip. I clarified it by asking is it 10mm or 1cm or what and he couldn't answer me. He changed the subject and asked if I had seen my tumor on the computer so he showed it to me and from what I could see it was somewhere between 1/4 to 1/3 the size of the pituitary.  So...if you had a tumor on your lung that was the size of golf ball you wouldn't worry about it as long as it wasn't cancer?  Sorry I'm being sarcastic....Sorry to vent on you...

I'm going to run away from him...fast

I just needed some reassurance that my gut was right....thank you, thank you

[rumpled]

Non-functioning tumors are generally macro-adenomas.

It is a well-known fact that those tiny little monsters cause headaches - he should read more.

He should do blood work. Even though the name of the dang tumor is non-functioning - it has hormonal issues. But I guess he does not know that. What it is is a tumor large enough to press on the pituitary on so many places that it causes many hormones to NOT function so you would have abnormalities and in addition, you would have eye and headache issues. Again, he should pick up a medical book.

From a website:
"Non-Functioning Tumors (Endocrine-Inactive Tumors):


Pituitary Disorders


Non-Functioning Tumors (Endocrine-Inactive Tumors)
Categories:

"As their name indicates, these relatively common pituitary adenomas do not result in excess hormone production. Instead they typically cause symptoms because of increasing size and pressure effect on the normal pituitary gland and on structures near the pituitary such as the optic nerves and chiasm. The major symptoms of patients with endocrine-inactive tumors are those of pituitary failure (hypopituitarism), visual loss and headache."

"Symptoms of hypopituitarism may include:

    * Nausea and vomiting
    * Loss of appetite
    * Weight loss
    * Fatigue, decreased energy
    * Decreased mental function
    * Dizziness
    * Joint pains
    * Women: infertility, irregular or nonexistent menses
    * Men: infertility, impotence in men, loss of body and facial hair
    * Loss of sexual drive

Symptoms of pressure or "mass" effect

    * Headache
    * Loss of vision - loss of peripheral vision or decreased acuity in one or both eyes
    * Double vision"

"DIAGNOSIS

Hormonal Evaluation

In patients with symptoms suggestive of pituitary failure (hypopituitarism), a complete endocrinological evaluation should be performed. These blood tests should include:

    * TSH (Thyroid Stimulating Hormone), Free Thyroxine
    * A.m. cortisol and ATCH (Adrenocorticotropic hormone)
    * LH (Luteinizing Hormone), FSH (Follicle Stimulating Hormone)
    * Estradiol (in women) or testosterone (in men)
    * Prolactin
    * GH (Growth Hormone)
    * IGF-1 (Insulin-like growth factor 1). This is also called somatomedin-C.

Based on the results of these tests, additional hormonal studies may be ordered."

If you can get his comments in writing, I would turn him in to the medical boards for incompetence.

[North48]

The micro non funct tumor has grown from a 3x4 mm to a 3x5 mm in 1 year and actually it's a little more than 1 mm because the 3x4 was really a 3x3.5.  The endo insists that this is not causing my headaches because it's just to small.  He also claims that a non-funct will not become functioning so there is no need to do any blood work.

Does anyone have any thoughts on this?

[rumpled]

That is a 1.5, not a 3T... You can tell if they pull you out - they have to stop the machine, and pull you out, inject, stuff you back in. The whole point of dynamic is NOT to stop the machine so they can take pictures while the contrast is given.

The other film was a 1.5 T too...

But yours is pretty visible, so they should be able to find it...

[LivingInHope]

"Utilizing a GE 1.5 Tesla MRI scanner multiplanar and multisequenced views of the pituitary gland were obtained."  I spoke to a radiological tech there after posting the above and she didn't make it sound like that's 3T- am I right?  She's planning to check the film to see if she can tell if they pulled me out or not- she said they do dynamic, but sometimes they have to pull a person out a little bit to put the dye in.

  The original MRI where the radiologist found the tumor to measure 4 x 6 mm, they described "Magnetic resonance imaging of the brian was accomplished in the environment of a high field "short bore" superconducting magnet operated at a field strength of 1.5 Tesla (Edge-Eclipse, Marconi)." etc.

[North48]

Thanks for the clarification, I will call and ask again.  I know I was just speaking to the scheduler.

[LivingInHope]

I've been parroting your "dynamic" MRI rhetoric to people on the forum but never realized that's what it meant!  I'm not sure they did it that way on my last MRI  I think they might have pulled me out put the dye in and put me back in- wonder if that's the way it was and if that would explain why it was barely seen and appeared smaller? (Radiologist thought 5 mm rather than 6 and didn't have enough to get a measurement the other direction like on one previously which I think was 6 by 4 mm.)

[rumpled]

If you were speaking to the scheduling people, they may not know, ask to speak to one of the techs directly.