meningioma

I am post removal of beniggn pituitary tumor 4 years. I have had some cognitive and other rehab services for 1 year, and had some improvemnt but still have memory deficits. During surgery had some damage to carotid artery because of location of tumor was very close to artery. Life has beeen difficult since surgery and wondered if my residual effects are common...headaches, trigeminal neuralgia, memory deficits.

[LivingInHope]

Hopefully some other community members who have actually had that surgery can give you some more info about residual side effects.  You might also put a call in to the surgeon and ask.  

But you titled your post meningioma, which we were told is a non-cancerous tumor on the lining of the brain.  Do you now have that type of tumor, versus the micro or macro adenoma you had removed from your pituitary?  Because an immediate relative of mine has that type (found after she had the worst headache she ever had had), and depending on the size and location, it can press in on the brain and affect various things.  The one my immediate relative has, we were told if it had grown too large, could have pressed in on the part of the brain that affects personality (hers is between her eyes).  She had a gamma knife surgery in the nick of time, because her optic nerve was in danger.  

There also may be something to meningioma and heredity- so you might want to check with other relatives!  It is thought my grandpa had a meningioma (discovered too late and before the days of MRI).  And recently, they discovered one in my great aunt (grandpa's sister).

I believe I had trigeminal neuralgia flare up for awhile with my TMJ dysfunction (pain in my face below my left eye) and I considered nerve block injections, but opted not to due largely to expense and not without some risk.  Have you ever considered getting a pain management doctor with expertise in those injections to try those on you?

Also, regarding those memory deficits- have you had your vitamin B 12 level checked lately?

[rumpled]

Also, if you have had a pituitary tumor removed, have they been managing your hormones effectively afterward? You would need thyroid meds at a minimum since the TSH would not be accurate and many need at least that, and many need growth and other hormones - that would effect the symptoms of cognitive and emotional health.

Also, make sure the tumor has not grown back - you have to keep checking on it. What kind was it? It sounds like it was rather large since it was near the carotid.

[movingforward23]

My tumor was benign but was diagnosed during pregnancy because of rapid growth due to hormonal changes during pregnancy. It could not be addressed until after delivery. There was compression of my optic nerve causing damage to my vision with now complete blindness to one eye. The trigemnal neuralgia I continue do deal with. I have not considered pain management for this, I will look a little further into it.

Thank you for the feedback on hereditary..will speak to family mambers. I would not want them to undergo the 8 hours of surgery I underwent.  

[movingforward23]

Thank you, I will request a complete work-up (hormonal) to get an idea of what levels are today. That may be contributing to the continued fatigue I seem to experience.
My TSH has been normal, therefore  I have not been placed on any thyroid meds. You however stated the levels may be inaccurte..can you give feedback on what additional test should be done.

Thank you, I am already feeling I am not alone in this. This has been a long fight and continues.

[rumpled]

It is unusual to have a normal thyroid reading after pituitary surgery, and wow - did you have a surgery - you had both eye and carotid involvement! What was the size, and what ultimately did they say was the type of tumor?

Was it sheehan's syndrome?

Effects post-surgery are common - I got trigeminal neuralgia too. That is not common, but it happens. Effects though are usually from hormone management. You need to keep up with that. Do you keep getting pituitary hormone checks?

[LivingInHope]

I am sorry you lost your sight in one of your eyes- how tragic for you!  You said they removed a pituitary tumor.  Do you still have a meningioma (tumor on your brain lining)?

[horselip]

Hiya-
So sorry to hear of your woes. My heart goes out to you.

These are the hormones made by the Pituitary gland:
-Thyroid stimulating hormone (TSH)
TSH stimulates the Thyroid Gland to secrete its own hormone called Thyroxine (T4). TSH is also known as thryrotropin. Another hormone produced from the thyroid is called tri-iodothyronine or T3. Thyroxine controls many bodily functions, including heart rate, temperature and metabolism. It also helps metabolise calcium in the body.
-Adrenocorticotrophic Hormone (ACTH)
-Lutenising Hormone (LH)
-Follicle- Stimulating Hormone (FSH)
-Prolactin
-Growth Hormone (GH)
-Antidiuretic Hormone (ADH)
-Oxytocin

There is a lot of good information on the net about these. But for someone who has pituitary issues the TSH is unreliable since your Pituitary gland may not make very much of it. In a "normal" person, a lower TSH usually means that you have good thyroid function. And in people with a healthy pituitary gland TSH is considered to be a good test.. So you need to have other thyroid function tests like your T4, Free T4, T3, reverse T3 etc.

And yes there are surgical remedies for Trigeminal Neuralgia where the nerve is blocked. I am a headaches patient too and man they suck big time! Makes it hard to think straight when you are doubled over with an ice pick headache, don't you think?

Horsey

[movingforward23]

Since surgery I have just gone through the many referrals and treatments while putting the extra time into raising my child born 4 months pre surgery.

So now since being on this site and the questions arose about location of my tumor it prompted me to look back at a few things and get some clarity.

You specifically asked about pituitary Vs. meningioma. I underwent surgery to remove a large meningioma that was compressing the pituitary galnd to my best understanding. Because of the effect on the pituitary gland I subsequently had abnormal hormone levels. This also contributed to issues of fertility.

Because of the size and location of the meningioma with proximity to the carotid artery surgery was the best option to debulk..followed by radioation. While undergoing surgery the carotid artery was damaged in addition to the optic nerve also- the result on my blindness to one eye.

I continue to get follow-up MRIs every 6 months.

I am curious to know how you are mananging on a daily basis.  What specialist are you following up with.

Thanks for all the good information

[LivingInHope]

Thank you for clarifying that!  I last saw a specialist at Vanderbilt who ordered very little testing, because she felt I'd had most testing already that she thought pertinent to my presentation.  I likely won't be back there unless I need surgery in the future (hopefully won't)... it's a number of hours from home and it was a tiring trip, even though we spent two nights at the motel there.

How I manage- by God' grace.  I really don't know if any of my symptoms are caused by my pituitary tumor or not.  But I do have a number of things that pop up their heads I have to deal with, leaning on Him- chronic migraines, TMJ arthritis flare-ups, interstitial cystitis flare-ups, IBS, GERD, osteopenia, etc..

Did you get the opportunity to check with your relatives to see if any of them suffering any headaches or even possibly showing an abnormal lump on their head have gotten MRIs about them?

[rumpled]

Did you get a copy of your pathology from the hospital or the doctor after your surgery?  I have heard of really large pituitary tumors, but not menigiomas on the pituitary. It may be useful to know the path of the tumor so you know what was there - as some pituitary tumors do tend to recur.

I had two of them, and one of mine grew back - it was Cushing's disease. I am now panhypopituitary. I replace all of my hormones but ADH. I also had fertility issues.

How many surgeries has your surgeon done? Sad that he/she hit both the carotid and the optic nerve.