Avatar universal

Pituitary Surgery Set For Oct. 20

To Rumpled and everyone,

It has been three long years since my son's pituitary tumor/cyst was found on MRI.  In that time, he has gone from being a tired, stressed-out but active ten year old, to an almost completely incapacitated thirteen year old (he's been getting around in a wheelchair since June, due to severe orthostatic intolerance).

Just yesterday I got to see for the first time, a sagittal view of the tumor. His pituitary is squashed flat, with only a tiny portion of the gland visible. No wonder he is severely hypopituitary! If his first docs had shown me this scan, I would have pushed harder for an earlier surgery, perhaps avoiding the severely depleted condition he's in now. The docs made it sound like there was no hurry, it could wait, until six months ago when they "strongly recommended" he get the surgery.
We are going with a new neurosurgeon now, and I am completely confident in this doctor's ability. However, I am extremely worried about my son's ability to recover from the effects of all the drugs, anesthesia, sedation, not to mention physical trauma. Nutritional testing he had four months ago showed he has impaired detoxification, severe oxidative stress and glutathione wasting, and other significant problems have developed (H. Pylori infection, positive ANA - 1:1280, and more). Docs don't want to treat him for anything until after surgery.

I will bring all of this to the attention of the anesthesiologist when we meet. Does anyone with surgery experience have suggestions for preparation, for a better recovery?  This kid won't/can't swallow pills or even take a vitamin anymore.

Wish us well.
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875426 tn?1325528416
I do wish you well.  I suggest if you know the Lord, that you not only pray but ask others who are believers to be in prayer for your son and for the doctor and for your peace.  God is the best source of help in time of trouble and it has been so important to me to know people are praying for me when going through a really difficult time.  

I am interested in the fact you mentinon sagital view- is that a view always taken w/pituitary MRIs?  I had an endocrinologist tell me recently that the radiologist he viewed my MRIs with felt that not all the views were on the MRI- I don't know why.
Also, I have orthostatic problems- was diagnosed with postural orthostatic tachycardia syndrome in 2004.  I have an appt. Monday with a neuroendocrinologist at Vanderbilt.  I plan to ask people to pray for that appt. myself, as I am nervous.

  I am glad you feel good about the surgeon for your son!  May God use their hands to skillfully remove the offending tumor cyst and leave intact the pituitary itself and may He heal your son miraculously with this surgery!
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Avatar universal
I wish your son well and I'll be thinking of him.  Keep us posted as to how he is doing after the surgery.  There is nothing worse then watching your child go through such an ordeal so my thoughts are with you.
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Avatar universal
I am new to this forum but i wish you all the luck i had a transphenoidal on my pit about 9 years ago and the surgery wasn't bad...Good luck i will keep you in my prayers.
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Avatar universal
Hi - so glad to hear your son is having his surgery. Will be keeping you all in prayer sending you good vibes leading up to and during recovery.
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Avatar universal
I wish you and your son well!

Make sure he stays hydrated after surgery (unless DI is an issue), refrains from bending etc. Lip balm is needed - I got very dry afterward.

Hope all goes well.
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985561 tn?1255200360
Hi, this is Angelo from Athens Greece,

I had the gurgery for my pituitary tumor remove, one month and 2 weeks ago.

In my case the doctor went throu from the upper lip.
In the first few days it is difficalt to eat and to drink water.

The upper lip was a mess, it took 2-3 weeks to be like beffore the surgery.
Also most of the area around the lips and the front upper teeth after the surgery will be nump, but as time passes it will be getting better and better as the days passes.

A small area of my upper lip is still nump and also I cant feel the two front upper teeth

There was not any pain from the surgery, I didn't felt nothing

So, dont worry, the doctor will do his best
I wish GOOD LUCK to your Kid

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596605 tn?1369946627
Good luck. Maybe you could get a basic multivitamin in a liquid form that your son can take prior to the surgery.
I think that the key after surgery is to rest and make sure that the hormones are really closely monitored as surgery can cause loss of function.
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Avatar universal
Thank you everyone for your well wishes and ideas. It's been a rough three years but I am hopeful things will improve soon.
My son is having endonasal surgery, so healing will be faster than sublabial, at least. He is so hormone deficient now, his doctors aren't expecting any great improvement after surgery. They expect he will be on hormone replacement meds for life. I hope DI will not be an issue after discharge.
The extreme orthostatic intolerance really worries me. Sometimes just the littlest movement causes him to be lightheaded and short of breath, and he can't go more that a few steps without sitting down. Supposedly, he has no heart problems, but he's had almost no growth hormone for four years. Doctors won't try to treat it, just say get the surgery, then we'll see.

Thanks again! I'll let you all know how it all comes out.
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