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01/15/2012 07:13 PM

Disturbing Eyes Changes...7.5mm Pituitary Tumor(page 2)

LeslieVA
 
Posts: 11
Member

In the last year or so my endo has wanted me to go on ritilan. He said "Leslie you are in the fight of your life and its important that you stay focused". With some of the meds Im on they have to be taken at certain times and that has been hard for me.

Consistancy if difficult for me. Last week when I had my appt with him he said again that he wants me on the ritilan. I finally agreed! I havent started in yet, but should be getting it filled next week. I was scared of that drug because Im not ADD or ADHD. He said it will not have the same effect on you, it will just help you stay focused. I have missed drs appts because of my memory and such. Maybe you could ask your dr if this could help you. I cant vouch for it yet because I havent started it yet but with you having such an important job maybe it could be an option.

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01/17/2012 12:14 PM
JSMANNING
 
Posts: 15
New Member

OK...good point about the Ritilan...but I have a question, probably the same one as you. At what point do they say "OK, enough Ritaln, let' fix it"? I don't want to be on meds, doing MRI's, bloodwork and all that mess for the rest of my life. I just assume them take it out and be done. Let me know how the Ritilan does and if your doc had any 'next steps' for you. Also, how big and what kind of pit tumor do you have? If you don't mind me asking...and how long have you had it?

Mine is 7.5mm, non-functioning or Rathkye's Cleft Cyst. They aren't sure, my symptoms started in May, diagnosed in Augsust, next appt at UAB in April...if not sooner. Waiting on doc to call me back now about the speech/vision problems.


01/17/2012 05:02 PM
LeslieVA
 
Posts: 11
Member

Yeah, thats how I feel about the meds! My tumor is only 3mm x 6mm but is pushing on my corodid artery. I have an issue with my platelets not either producing enough sometimes and also being defective. Ive yet to recieve an explanation as to how that happened. I had never had an issue with that before. So I am a bleeder. My tumor is not producing enough growth hormone and has cause me to have severe pain in my bones. My lower back has 2 bulging disc and I have degenerative disc disease. Now my thyroid is underactive. And Ive developed insulin resistance. It makes me so mad sometimes because at least 9 years ago I went to the doctors with swollen joints and I kept telling them my bones hurt and there cold. They looked at me like I was crazy. They kept saying "do you mean your joints" I said all my bones. It wasnt until around a year and half ago that they found the tumor. They did the MRI because of I was getting headaches and my vision was getting so blurry so fast. Like one day I couldnt see the numbers on my phone. My new endo said that if they had of listened to me a long time ago he would have helped stop the bone and muscle wasting sooner. I take gh shots everyday. Most of my meds are replacing what my body doesnt produce enough of. Because of my lower back issue along with the disc problem Ive developed "facet syndrome". It has made me have incontinance at times lately. Its so embarrasing because when it has happened I cant feel it. Im just 48 and not ready for depends. Last Christmas I was on my feet too long and at a parade with my grandchildren and just wet my pants. Can you believe that! So many years of not feeling well, sometimes my heart just sinks. Please please please make the doctor listen to you. And keep all your labwork and copies of your mri's. Ive been feeling bad for so long and have had a very hard time getting real help until I found that new DR. One Dr sent me to pain management and I had a severe reaction to the med. and for 4 days I couldnt get them to call me back and I ended up in the ER. Ive chosen not to take that route and never went back there again. You are so young and you deserve to feel better.

01/17/2012 05:11 PM
LeslieVA
 
Posts: 11
Member

My endo said he sees people with very small tumors that can cause huge problems and some people have large tumors with little or no symtpoms. Its weird.

01/18/2012 09:26 AM
JSMANNING
 
Posts: 15
New Member

Oh Leslie, that is awful. Have they said if they plan on doing surgery or at what rate the tumor appears to be growing. That is funny you say the whole incontinance things because there are times when I 'trickle' and didn't even know I had to pee then I am running to the potty. At least I don't feel alone now. Good luck to you hun!

01/18/2012 05:10 PM
LeslieVA
 
Posts: 11
Member

They keep saying because of my platelet issue Im high risk but Im willing to take that chance.

04/27/2012 06:57 PM
hkrull
 
Posts: 10
New Member

I realize this was posted a long time ago. But the symptoms that you have listed are the same as mine. Like literally. My endo was horrible. She kept telling me that they couldn't have anything to do with it. She wouldn't even believe that I was having vision problems! Then I got my vision field test done and failed... badly... and my endo then told me my eye doctor wasn't a real doctor! finally I have to go get an MRI and I have to meet with a neurosurgeon in a couple of weeks. I wonder if you've gotten any answers because it sounds like what I'm going through. I feel for you!

04/28/2012 05:44 AM
escinkc
 
Posts: 195
Member

Just read through this thread and want to make a quick comment about the vision issue. When my pit tumor was discovered, it was huge (larger than 5 cm) and was pressing on my optic chiasm (nerves). What led to the discovery of my tumor was a vision exam. My peripheral vision was blocked out from the area between 'nine to noon' in my left eye if you think of your visual field as a circle with clock hands on it. And it had been that way for at least months, because it takes a long time for a tumor to grow as large as mine had. My tumor was also completely encasing my carotid arteries on both sides, and had crammed its way down into my sphenoid sinus - completely obliterating the bone structure that normally is present between the pituitary and that sinus area.

I tell you all of this for this reason - after my first of two surgeries, my vision immediately improved. As in within 2 months, my field of vision was 90% better. After 6 months, 95% better based on visual field testing.

So - good news for you all! Please don't worry too much about the ability of your optic nerves' ability to snap back once the tumor pressure is relieved. It can and will get better. Especially since you are talking about tumors with sizes in the mm range, not the cm range. My tumor was pressing so hard on my brain my whole frontal lobe was off-set by several millimeters. You could see it in the MRIs pushing my brain up. Like someone put a little ballon in that space where your pituitary sits, and blew it up way too big!

And even though my tumor was completey wrapped around both carotids (still is), I had MRAs done on my head that showed 100% normal arterial blood flow. That artery is pretty resilient and doesn't cave in from some measly little tumor trying to force its way in its space!

But of course the endocrinology is the hard part to straighten out - it takes time and balance but if you can find a good endo AND you take the driver's seat in your medical treatments, you will be ok!

This was supposed to be an uplifting post - not sure if it came out that way...

Ed

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