new guy- pit macroadenoma- question

[mrfeelbad]

hey good folks,
first time posting to this forum.  
can i ask if any one else has crazy dizziness, a lack of coordination and weird odors?
or is it just me?
surgeon is not convinced that my tumour has anything to do with these symptoms, he chooses not to operate.
these symptoms have haunted me for over a year.
can anyone please shed light on this please?
not being able to walk properly blows.

[rumpled]

Are you currently on meds to lower your levels? What size is your tumor?

Are you being monitored at a pituitary center and was the surgeon an experienced pituitary surgeon (50/year, 500 lifetime)? Is your endo a neuro endo or a normal endo?

Symptoms with pituitary can vary and not every symptom you will have can be attributed back to your tumor. Your decision for surgery should be based on how the medication is lowering your levels and the size of your tumor. Do you get copies of your tests and MRI reports?

I can say that I had some dizziness, but I have no idea if it was attributable to my tumor. In general, I would think weird odors is probably a sinus issue and that can also toss your ears up causing both dizzy and the unco-ordination issue. Guessing. Have you been to an ENT?

There could also be other issues completely separate from your pit tumor - does your PCP have any ideas, or run any tests? A surgeon pretty much is the person you see after all is done - diagnosed etc. - someone else has to do all the legwork to get you there.

[mrfeelbad]

hey rumpled pleased to met you. thanks for you attn.  my wife is the smart one.. with all the answers, but i'lll do my best to answer all your questions.
- I've be on chaber for approx 9 months
- size is approx. 2cmx 1cmx 1cm
- I am not being monitored by a pit centre ( good suggestion)
- My neuro surgeon is super experienced from what i understand
- I think my endo is a normal endo ( another good point )

My surgeon seems to think my tumour is (slowly) shrinking, and because it is a secretor, he recommends us not to operate right now.. but rather see if the meds do their thing.  
regarding the weird odour, I have seen an ent who ruled out a sinus infection.  my neurologist counted out something more serious. my neurologist states that with the amount of tests she has done, that she thinks she can rule out the serious disorders.
i show parkinssonian- like Symptoms, but she seems hesitant to jump to this conclusion.. same with cerebellar ataxia.
As far as my hormones go.. nothing that is glaring.  
the doctor's seem to think i am a peculiar ( because of my symptoms.... not my third nubbin).
I thought about cranial pressure, after reading these forums, but the surgeon said no.  i thought i read (on this forum) about some patients smelling weird odours... which is why i was asking.
Anyhoo, God bless you all. I hope life stops kicking all our  butts.
Thanks rumpled, I'll take anything you got.
mrfeelbad

[LowCortisol]

I forgot to ask you if you check for MEN-1. I do.

This as you may know is a Multiple Endocrine Neoplasia type 1 or Wermer's syndrome is part of a group of disorders that affect the endocrine system through development neoplastic lesions in pituitary, parathyroid gland and pancreas.

I got the all clear for that (in my pancreas) a few months ago for this but my endo suggests this be checked annually.

This can develops following a pit tumor and is what killed Steve Jobs. Contrary to the mass media reports that he died of pacreatic cancer, he actually had a Neuroendocrine Tumor  (NET) in his pancreas.

[LowCortisol]

Be guided by rumpled.

She knows this stuff very, very well. I had a pituitary macroadenoma followed by 2 years of adrenal insufficiency, the opposite of Cushing's (which is what rumpled experienced).

I cannot add or improve on her comments. Except to say that if a tumor is slow growing many doctors will say one can wait with surgery provided three things are present:

1. The tumor can be treated with meds
2. The tumor is not as yet affecting your vision and
3. The tumor is not invading other areas, eg cavernous sinuses.

Once a tumor grows out it can wrap itself in or around other  areas making it tricky to remove, meaning some tumor could be left behind only to most likely regrow.

In my case the tumor was 3 cm long, growing north (towards the optic chiasm) but was not invading any other area.

My logic - given meds were of no help  - was to ask the neurosurgeons I saw one question:

"At some point will I need surgery?"

The majority said "ye"s and then I replied "ok lets get it on" after all, I will never be as young as I am now (and as fit) and in time (maybe years maybe less) the tumor will as they say "compromise" my vision, and the tumor will never be as "self contained" as it is when first detected.

If however your tumor is not growing towards the optic chiasm and is not invading other areas then I would NOT rush to surgery.

[rumpled]

I am only a patient - and not perfect! So feel free (please) to do further research. I post websites in the health pages as a start. I had other people help me and without them I would have been in dire straights myself.

Your tumor is considered large - so I hope you have your report so you see, like LC, where it went - did it grow up near the optic nerves or down into the cavernous sinus or wrap around the carotids. That I would want to know.

Medications work on most people - but on a tumor that size, the placement is what should dictate a treatment course first. On something that size, I would *guess* like LC, you may have to have surgery as well unless meds take you down pretty fast. So I would find a pituitary center AND a pituitary surgeon... they would treat you probably much differently. A skilled surgeon and a pituitary skilled surgeon is different. These lesions are always small or smallish - so going to a normal surgeon they will always defer not realizing it is location and the hormones that is the factor.

You have been on meds for 9 months -did they do a 6 mo. MRI?

I know I got some myasthenia gravis sort of thing (sort of as 50% say yes) and I kind of gave up on finding the real diagnosis after a while. I get tired, I fall, I can't swallow and things get weird - but no one can figure it out - but my neuro finds me alternatively fascinating and frustrating.

Low Cortisol:
Re pancreas and MEN. I tell people I have MEN-JEN (my name is Jen - get it!) but all my tumors have hit everything else but the classic MEN places. Bummer. So I got a ton of tumors and cysts, but no name. No one will check my pancreas except blood sugar. :( I did ask. My CTs do come out clear when I have them though.

[mrfeelbad]

prolactin secreting macroadenoma
hey rumpled,
there is no onus on your advice... good or bad.  I'm a big boy and I'm comforted by people who can empathize with  same unique perspective as i  have.  
That said, i have been through enough symptoms to fully understand all of your aches, pain, frustration and fear... even if our symptoms may vary.  rumpled, thank you for your thoughts.
i have done a 6 mo mri.  the surgeon's  decision, not to operate, came after looking at my latest mri result.  the tumour appeared to him, as shrinking.... but the tech's report seemed to imply no difference in tumour size.  the 2 conflicting reports, cause me a little hesitancy to fully commit either answer... which is why i research forums.
what i'd like to find out: Does anyone else smell weird odours?  Are others CRAZY dizzy? two  of the MOST annoying symptoms i suffer from daily.

i have already been tested for everything my neurologist can think of.  

I've had mixed hypothesis, that pressure from the tumour could be causing these. I was hoping to get validation for both these symptom's by members of this forum.

my neuro surgeon definitely doesn't seem to think the tumour is causing enough pressure for me to be so unbalanced...   BUT...  my acupuncturist believe's 100% the tumour causing the unbalance.  

I don't care who's right. I'd JUST like to climb a flight of stairs normally again.. without a handrail.

any help would be appreciated.

strength,
mrfeelbad

[LowCortisol]

Normally when there is a conflict of views between radiologists and neurosurgeons, I take the word of the latter as they are more skilled. Many radiologists report on the brain, spine, finger, and other pats of the body without specialising in any one part of the body.The neurosurgeon 's speciality is the brain. Although some are brain, neck and spine.

That said, if you are not really convinced by the neurosurgeon I would seek another neurosurgeon for an opinion.

You cannot make an informed decision without knowing exactly if the tumour is growing or not and if it is, at what rate per six months.

[rumpled]

Usually the surgeon has a much better read on the films than the radiologist. I know countless people that have had films read as normal and the surgeon finds a tumor. In my case, my glands keep growing back. It is not unheard of to get other opinions and some of what that guy said kind of makes me think he is not a pituitary surgeon, so perhaps contact the expert here (who is for sure) for a free read.

In general, a larger tumor like yours is an automatic removal from all I know unless it responds pretty quickly. I would make sure too that you have the report and know in what direction it has grown. In your case, that is critical info.

Re smells - I was in my neuros office Monday and checking out his brain 3-D (maybe 2-D) things hanging in his office - and what do I see - the olfactory nerve hanging out right under or near the optic nerves! So depending again on how your tumor went, your tumor could be pressing up there? Not a doc, but I had no idea it went there.

Sorry for delay - got sick.

[mrfeelbad]

hey guys,
thanks for your  responses.
I agree with both of your advice on the MRI results.  Surgeon trumps radiologist.  
That said, my concern is regarding these "weird symptoms" being dizzy everyday of this existence is not so fun.  neither is smelling this weird aroma.
I was hoping to get some insight by a surgeon, but he says the tumour has nothing to do with my balance or smell.
i kinda hoped he would confirm that the tumour could be causing the issues... guess not.
i looked into a pit center, and we do not have one in my city.  
Also, the credentials of my surgeon concerning pit tumours, seem to be outstanding.
I will seek a second opinion from another surgeon... but this will take me months to do.
til then, rumpled, be as well as u can. i hope you can feel better.
LC... thanks for your advice. Appreciated.

[LowCortisol]

I agree with the surgeon who says the balance and smell issues are not related to the tumour. They seem to be different problems that need to be addressed. That said, both issues should be brought to the attention of the same neurologist.

Also, forget the acupuncturist.

[mrfeelbad]

hey folks,
it's been a while. I thought i might give folks a small history/refresher.  not much ch ange since Feb. except I am a little more depressed losing s so manysenses.
I am a 43 year old male that was diagnosed with a prolactinoma, accidentally, last year on an mri (2.4X1.3X1.2 cm) while trying to figure out some issues i was experiencing. the pit- tumour is growing on the right-side and is growing into my cavernous sinus.

i have obviously have done all the tests and done pretty thorough research and am pretty sure i can rule out ms, parkinson's, spinal cerebral ataxia (genetically), als.

i'll cut to the chase.
my team of specialists have not been able to explain some weird symptoms i have been having. have any of you fellow Prolactinomers, experienced any of these?
- unsteady gait (dizziness)
- weird odours
- incoordination
- difficulty speaking (hard to gather thoughts and difficulty pronunciating clearly)
- fatigue
- mild resting tremours in my hand (i suspect from chaber)
- weight gain (60 lbs over ten years... but 30of those lbs came in 6 months)
- tinnitus

As i said, my doctor's cannot explain my condition with any certainty. Originally i went to the doctor's complaining of unsteadiness while walking.
One mri later, they stumble upon my pit- tumour. Good times!
Since then i've been shuffled from specialist to specialist. Neurologist, Endocrinologist, Optemologist, ENT, Neurosurgeon, all of which take months to see... all of which told me that i do not present typically... none of which can help me.

From what iTHINK I can say, is that IF my condition were life threatening, that one of my doctor's would have seen it on one of my mri's, ct scan's, ultrasounds, bloodtests etc.
14 chaber months later, I finally see my surgeon, to have him tell me that he cannot explain my condition and the my pit-tumour has got nothing to do with my symptom's, and that he will not operate as he feels the meds are shrinking the tumour (marginally as the radiologist claims it is the same) All my doctor's, sound very reputable in their fields.

Not to sound like a martyr, but things could be SO MUCH worse. I will say however, that the dizziness has affected my livelihood greatly.
Any responses, stories, advice or cures would be greatly appreciated. Other forum members say my symptoms are absolutely normal they too also experienced my symptoms.... while my med professionals do not believe my symptoms are tumour related.  all your guy's input to clarify my symptom's a bit would certainly be helpful.

I go for another MRI in a few weeks. I am sure to have more to say after the results come in, in a moth or so.  

if i get rid of the dizzies ( spinocerebellar ataxia)  i'll be a lot happier.

mrfeelbad

[sickandtired456]

I have many of the same symptom as you. Like you, my neuro-endo at a pit center in a teaching hospital says my 3mm pit tumor (that mildly elevates my prolactin levels to 48) is not the cause of my symptoms. He sent me to the neurologist that diagnosed the headaches as Occipital Neuralgia/ SUNCT headaches. Currently doing PT to loosen the neck/skull muscles with hopes that it releases the muscle squeeze on my nerves and blood vessels.

- dizziness from sitting or laying down to standing occasionally. Never happened before this. Could by HCTZ med tho

- weird odors! Drives me CRAZY! Been to the ENT who finds no sinus infection. I read that elevated prolactin can cause heightened sense of smell tho, shrugs.

- fatigue. Had it strong in the months before tumor was discovered, slowed with cabergoline, but the day after I take the pill i feel pretty tired. It does go away until i take my next dose, tho. 2 days a week of fatigue is better than the whole week i guess, shrugs.

- mild resting tremours in my hand. I can see the vein jumping thru my skin next to my thumb. Dr increased my Cabergoline and all my muscles started twitching, so I went off for a month and restarting now. Still twitching :(

- weight gain (45 lbs since I started having symptoms about 11 months ago. I vigorously exercise with a trainer 3 days a week, can't lose a pound. I need to diet, but restricting food makes me feel worse. lame excuse, but true, food makes me feel better. Also mucho water retention. I gain 5lbs if i miss a water pill.

- tinnitus. I can make it louder by jutting out my jaw and stop the sound by pressing my finger just below my ear lobe. PT therapist says where i am pressing my finger is where the nerve extends out from my 2nd cranial nerve. She says this ties into the occipital neuralgia. Who knows...

I pretty much feel crazy from all this. Drs don't seem to want to take responsibility for any symptoms outside the basic realm as then they are beholden to try to fix them and apparently some of this stuff is unfixable?  Family and friends are tired of my always feeling sick or down. I'm tired of it too. I'm fat now, I'm tired and depressed. I don't want to add an antidepressant as i already take Cabergoline, Gabbapentin, lisinpril and HCTZ and occasional packs of predisone and I'm only 48 years old :(

[sickandtired456]

PS
Sorry for being a 'Debbie Downer'. Some people (here especially) have it much worse than I do. I guess complaining doesn't do a darn thing, I'm just feeling down tonight.

[LowCortisol]

You said that the doctors "think" the tumor or is shrinking with you taking meds. Well, frankly "thinking" is not worth a hill of beans. The tumor's size can be measured. It is either shrinking or not.

Comments like "marginal changes" are often falsely made when comparing 2 or more MRIs, often from different imaging centres who measure differently.
If doctors are convinced the change is "marginal" then I would read that as NO CHANGE.

How long have you been on the medication?

I had a non functioning macro adenoma but recall that for folk with prolactin secreting tumors, either cabergoline or bromocriptine are prescribed.

If they work then surgery is often not needed.

Cabergoline is claimed to work better and may have fewer side effects.

That said, 20% of tumors do not shrink. They may just not grow.

MRIs should be done 3 months after starting treatment.
And at 6 mths.
If after 6 months the tumor hasn’t responded well enough to treatment, or if serious side effects occur, then surgery should be considered.

My worry is that you mentioned the tumor is invading the cavernous sinus. This makes it a trickier job to remove the tumor if you ever need surgery.

The comments of some of your physicians who say your symptoms may not relate to the tumor may be right.

Have you investigated other possibilities:

1. Have you had a battery of sexually transmitted disease tests? These can manifest in many forms and not just in the genital region;

2. Have you visited a well regarded pituitary centre in a high volume hospital where you could meet with a neuro opathamologist?

3. Have you visited a well regarded pituitary centre in a high volume hospital where you could meet with a neurologist?

[mrfeelbad]

hey folks,
"sickandtired456"- you will never sound like 'Debbie Downer", you wrote your own experiences down.. in detail... and I appreciate that.

LowCortisol- always offering good opinions. Hope you are doing well

To all those who have it worse off... my apologies for belly aching when i know you are suffering way worse... i feel a glimpse of your pain.  Bless you guys.
That said,  Doctor's seem to think, although the SIZE of my tumour hasn't changed.. that its SHAPE is more towards what they expect to see.  
I do not care about being on meds (although i'd prefer not to have any tumours)I am more interested in finding out why all the discrepancies about this balance/dizzy issue.  like i said, other members of other forums, seem so sure about the commonality of this symptom... mostly all of my symptoms... yet others are not...including all my professional's.
I tried to go to see a pit- endo... and go to a see pit- center.   but they do not SEEM to have a good ones in my town.  
I will say that, my neuro-surgeon has a crazy good reputation.  His feedback makes him sound almost God- like.  ALL my med team seems to respect his point of view.
Although,my point of view, is that of someone who wants to understand this dizzy/gait issue and feel better.  I got a life to get back to.  My own GP is saying that i have spinocerrebellar ataxia.  I am not disagreeing with him.... however... i would like to understand what the cause is.  
I just would like to know... Will removing my Tumour, eventually make me feel like myself again.  
I have a son.... for his sake (if he ever is faced with an ailment like me....knock wood) as well as for myself and my family.  i have to find the answers.
thanks for reading/ writing.

mrfeelbad

[LowCortisol]

You raise many interesting points, but at the crux of it:

a) your neuro is held in very high regard in a community where his knowledge dwarfs that of others

b) you want to know if the tumor is causing your symptoms and if its removal will remove the symptoms.

Both (a) and (b) can only be answered by visiting a busy pituitary centre which has

a) physicians that have seen MANY different types of such tumors and can explain with some confidence what you are experiencing AND can advise on what a tumor removal will do for you AND

b) at such a centre they will know if all the symptoms you are experieincing relate to the tumor or are altogether a different kettle of fish.

The fact that there is no good pit centres near you offers you a choice:

a) go to the nearest BEST high volume centre. if that means traveling a fair way then I urge you to do so. I travelled half way around the word to remove my tumor OR

b) going to a centre near you that is not up to the job COULD result in you having problems for a longer period than is necessary. Doctors who you mention eg GP who know little are wasting your time. And with tumors, time is important. You do not want to delay showing the scans to a very good doctor at a good pit centre.

As for me, I am doing well inasmuch as I am on no meds. The downside is that recently ANOTHER tumor was found, this time in the spine which will be removed next month. "Apparently" many say there is no correlation between the pit tumor and the spine tumor, but I wonder.

[Elizabeth901]

This just caught my attention... you have trouble swallowing?  Please explain more.  

[Elizabeth901]

Hello!

I am following your thread but wanted to comment on this.  I have a 9x9x8mm Prolactinoma.  It has grown from 5x6x7 mm in Nov. 2012.  I have had what I thought was side effects to the medication, that are similar to yours.  I"m really struggling with dizziness.  Also, trouble concentrating, weight gain (30 lbs in 1 year) and a CRAZY humming in my left ear for over a year that will not go away.  Are you on Cabergoline?

[rumpled]

It is said to be a form, zero-negative or atypical of myasthenia gravis that causes my swallowing issues. Really, not sure.

[Elizabeth901]

Oh wow...is that tied to your pituitary tumor?  I have had trouble swallowing for over a year.  (I have to drink LOTS of water when I eat or I literally will choke).  I went in for a throat scope and all they said was maybe it was just irritated from food allergies.  I am so frustrated.  3 years ago I ran my second half marathon.  I am SO far removed from that now and I just keep feeling more cruddy.  :/

[mrfeelbad]

hey guys, thank you for all the responses.

LowCortisol, not to sound too 'Kumbaya' on you... but sh*t news about your other tumour.  Hope all goes your way my friend.

I have been on Cabergoline 2X a week.  My dizzies started before starting taking Pituitary Meds.

I  too have had an unexplained ear ringing for about a decade.  At the time my ear doctor thought it was from all the guns i fire. I thought it was more likely my wife's snoring cause my deafness... seeing as how i've never fired a weapon before.

I have been dizzy for a year now.  It is destroying my life a little.  I know things could be worse.... but imagine being dizzy,every minute of everyday.

Along with my balance issues, I have crazy slurred speech, uncoordination, tinnitus and a slew of other weird symptoms. I know we are all different... but i wondered if any other Prolactinomers felt the way i feel.

Other forum members have said they have experienced similar symptoms.  I was hoping to seek out others... so i don't think i am nutz.

LowCortisol..... good luck.

mrfeelbad

[mrfeelbad]

Elizabeth901.

you sound as frustrated as me.  I feel your pain, but can't comment on your experience, without giving you some bulls**t.  info.
I can offer my condolences for what you are struggling with.... and promise you that if i find a way to improve my own drama..I will pass it along.

I started out with mild dizziness  over a year ago.  and over the course of some time... have worsened with these crazy symptoms...  I display some MS, Parkinsonian, and Ataxia- like symptoms, I have done a battery of testing including hormone and blood-tests.... all the tests are 'normal', and as far as my specialists can say.  However my condition doesn't present typically for any of the aforementioned (they have no test for Parkinson's yet). I suppose i am lucky not been dx'd with any of these yet... but I do not feel healthy either.

i am in the process of figuring out my next steps, and will look for a pit clinic as I've been advised time and again, from people with our disease. I will come up with a plan, after my results from my MRI scheduled for next month.
I've already started the ball rolling.

I don't have any full blown troubles swallowing yet... but I find weirder than normal aspects when i do drink a glass of water.  kind of like with my pit tumour began.  I knew something did not feel right.  you all know the feeling, of things not feeling quite right.

Keep us updated on your swallowing woes once in while when/ if you feel like sharing.  Til then... sorry you are experiencing that symptom.  


til next update,

mrfeelbad

[rumpled]

The MG is not related...

Hope all goes well with your other tumor LC...

[LowCortisol]

thanks.