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5mm pituitary tumor in dangerous?

i was diagnosed having a 5mm tumor in the right part of my pituitary gland, my period becomes irregular, i feel dryness
all the time, and my left eye is blurry. i'm having head ache sometimes and its really painful as if i want to throw up. also i'm gaining weight and i'm not even eating too much, infact i work out all the time. i am very much concern in how i look physically, but now i am gaining weight and i cant stop it. i wanna know whats goin on. is it dangerous? am i dying? how will i loose weight? what can i do? i am so frustrated and i'm only 20 years old, i want to have my own family in the future. what can i do? i need your reply badly. my name is jeimey.
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Avatar universal
Wow tears are coming to my eye's because i was in and out of hospital with bad headaches for 2 whole years. I wanted to die as they where that painful. They keep telling it was my sinuses. To cut a long story short. My tumour was the biggest he had done. It was 6cm. My body had shut down for 3 days while i was at home. My sister found me on the 3rd day. After 2 and a half years i'm still fighting it. I've had 2 ops and radiotherapy end of 2016.
I'm now partially sighted and just started on my growth hormone needle last week as i'm always tired and also gained loads of waight.
For anyone that's got a tumour.,don't be scared. All will be ok and the op is easy. I also had a shut fitted 4 weeks after my first op in 2014. My shut then twisted and had to go back in for another op as my body had shut down yet again. But this time my dauvhter had called to fire service to brake into my home. paramedics was also called out.
You can say i've been through the mill. But thank god i'm still here fighting on.

Darren

Helpful - 1
1 Comments
Wow tears are coming to my eye's because i was in and out of hospital with bad headaches for 2 whole years. I wanted to die as they where that painful. They keep telling it was my sinuses. To cut a long story short. My tumour was the biggest he had done. It was 6cm. My body had shut down for 3 days while i was at home. My sister found me on the 3rd day. After 2 and a half years i'm still fighting it. I've had 2 ops and radiotherapy end of 2016.
I'm now partially sighted and just started on my growth hormone needle last week as i'm always tired and also gained loads of waight.
For anyone that's got a tumour.,don't be scared. All will be ok and the op is easy. I also had a shut fitted 4 weeks after my first op in 2014. My shut then twisted and had to go back in for another op as my body had shut down yet again. But this time my dauvhter had called to fire service to brake into my home. paramedics was also called out.
You can say i've been through the mill. But thank god i'm still here fighting on.

Darren
12 May 2017

Avatar universal
Hello. I am 33 and I was diagnosed as having a 3 mm cyst on my pituitary gland stock at 29. I went to the endocrinologist to discuss what to do. I have an MRI done every 6 months to assure it is not growing. I have weight gain/loss fluctuations ALL the time. It's the hormones, also lack thereof. You need to go see your Dr and get blood tests to determine what hormone you need or which one you need to decrease. It's a struggle and can sometimes take a while to figure it out but once you do, you will be able to keep your weight under control. Good luck hun. :)
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2 Comments
In your shoes, I would consult a pituitary center. There is no need for such frequent MRI scans as one year is the norm unless you have a non-functioning tumor which grows fast.
It does not sound like your hormones are being managed.
Yeah, clearly they are not as I just got diagnosed last night with hypothyroidism. Lol. Now I have to go back to the endocrinologist and figure out what's next for this condition. It seems like a never ending battle. But I'm hopeful that now that we know I have hypothyroidism, my anxiety and panic attacks will slow down a bit.
Avatar universal
Not just any surgeon treats pituitary - if they just go on size alone, which is taught in school, the lesion will be ignored. You have to go to a pituitary center where they know it is not the size but the hormonal secreting activity that needs to be addressed. Your tumor needs to be evaluated with lab testing first now to determine the nature of the lesion to see if it can be treated with medication or if you need surgery.

Get the right doctor then you will get the treatment - get copies of everything.
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3 Comments
I went to a neurosurgeon i have a 5mm i have horrible migraines and my cortisol is high also he said that its just big and wants to do another mri to make sure its not going anywhere should it b removed since it is already 5mm
I also just found out i have a 5 mm upper posterior pituitary nodule. i have been on thyroid meds for Hashimoto’s for 8 years or so. i have had migraines for as long as i can remember. I have headaches daily for years. I also have FAP, Pcos. so everything gets blamed on that and allergies bad. had MRI on back and neck have deterioration, of disk and faucet joints. which is how they just found mine. i will be 42 Tuesday. I pray they do further testing. i have not been right in years. cant lose weight. I can starve my self and gain weight. so tired of being tired and in pain. prayers for all!     Tired of doctors telling me im fine and to lose weight! I know they have thought I was full of crap but I know how i feel and what i do. just about over it all.  Good luck everyone!
also 2 years ago i started having swelling on right side of head they did ct scan showed 5mm lymoh node possibly . went back to hospital last month, they did ct again showed nothing sent me home in pain. felt like lightning bolts on the right side of my head. so i left hosp went straight to my family dr whom gave me a nerve blocker in my head ,instantly worked. not sure if it is related to growth or not. i do know these doctors are dragging their feet, all in the mean time , im losing my mind
Avatar universal
Hi I was recently dx with a pitutary tumor 5mm. I was less fortunate that all of you. Neurologist referred me to a surgeon who spent approximately 5min with me and told me go see my Neurologist in a yr for another MRI. despite my having headaches everyday, blurred vision, arm/legand neck pain.

This was my very first visit with this surgeon and it was my last. I am searching for a new doctor.
Helpful - 0
327385 tn?1378360731
hi jemica, i had a pituitary tumor 22mm. i also gained weight and had breast discharge. my periods were nonstop. i stayed so tired and the eye and temple pain made me sick and i would throw up to. my eye site started getting blurry . i dont want to scare you at all, but call your neuro and tell him about your vision change.he will order a mri to check for any changes. dont ingore the blurry vision, i almost went blind.i had a crainotomy and now i have my vision back. i still havent lost all the weight i gained. just call and tell your neuro any changes that you may have . hope i dident scare you. take care of yourself.best wishes
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Avatar universal
Sure.
First, make sure you have the most experienced surgeon you can find. Ask a lot of questions and be comfortable with him - do not just take any old neurologist - this is a special surgery and requires special skills. It is best to have over 500 lifetime and 50 in a year to be experienced in pituitary surgeries and also to know that the doctor knows a lot about your particular type of tumor as they are not all the same. For instance, I had Cushing's and those tumors are known to be soft and jelly like are harder to remove. Larger tumors or tumors that are small but in bad places like too near the carotids also require a surgeon who is super experienced. So do not be afraid to ask questions and travel. Have copied of everything for yourself and read everything.

Usually it is done through the nose although some will do it through the upper lip if the sinus is too small. Surgeons differ in that some use packing, some will not, some will put in shunts automatically, most will not, some will put you in ICU for a night, some will not, some will keep you for a couple of days, some will keep you longer. All of this is very dependent of the surgeon - just like post op instructions like if you can use saline or not, if you have to sleep with your head elevated for a short time or not, and how long you can not bend over etc.

As for danger, the real danger is the risk of stroke and blindness from being close to the optic nerves and the carotids - hence why you need the absolute best surgeon. The rest of the risks are the normal ones from any surgery which are from anesthesia.

There is surgical recovery and hormonal recovery. You did not give the type of tumor so it is hard to say about all of it but surgical recovery should take about a month or so. It may not look like much on the outside though!

I am not sure what you mean by side effect?

Hormonal recovery depends and can take up to two years. For some people like me ha ha - it takes longer. I had Cushing's and a prolactinoma.
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Avatar universal
My teen-age daughter has a large Pituitary tumor and requires surgery. Can you give me some advise on what she should expect as far as Surgical procedures, before and after treatment and how dangerous is the surgery, then what are the side effect.
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Avatar universal
Jeimey,
Having had two pituitary tumors, they are certainly something not to be ignored and any pituitary tumor of any size needs attention.

With eye symptoms, have you been directed to a neuro-opthomologist?

The other symptoms should be covered by a neuro-endocrinologist.

Uncontrolled weight gain, irregular period sounds like Cushing's syndrome. It can be treated and when treated, you may lose the weight and get more normal. It requires a lot of testing. I suggest you do some research on the doctors and testing as lab error and not using an expert will hold you back from getting adequate treatment.
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