My son, age 14, had surgery 6 months ago. His main hurdle has been anxiety, fearfulness. I'm writing this because I've had the hardest time finding information beyond post surgery short term and hope someone can learn from our experience.
I searched for several years to find out why my son never felt good, always tired, nauseous. He'd been worked up, down and sideways, lost being a kid. Doctors & specialists told me I was an anxious mom, that I was the problem; he was looking for attention and I should tell him to go out and play, not pay attention to his complaints. Did I listen to them? No. You have to go with your gut, plus the Lord kept nudging me.
Once the headaches began we were told they were because of his allergies. Then because of his allergy medicine. We were sent to an ENT who prescribed something else, same thing. Te were told the headaches were from sinuses. As they got worse we were told it was the sinus infection. By now months have passed & the headaches worsened. Finally, my son said that he could tell the headaches got worse when he changed positions ie from sitting to standing. That was a red flag for me, all bets off. He also had been closing the curtains in the living room for months, said the light hurt his eyes so the dr. thought light migraines.
Our pediatrician referred him to a neurologist. I told her I didn't like that the headaches shot pains when changing positions, she focused on the migraines. Two days I'm told there're no appts. available for 2 months. I took my son to the E.R.
CT came back normal. The E.R. doctor and I agreed that my son had the signs for migraines but we didn't like how long and continuous the headaches were nor the changing position thing. The next morning the hospital called and said that all CTs are read twice (at least at Children's Hosp) and there was a shadow, please get an MRI tomorrow. Got the MRI that night (Halloween!) and our pediatrician called the next morning. Because she knew me well enough she didn't make me come to the office and told me our son had a tumor. Shaking? Yes!
She said we weren't to go to the neurologist like you normally would but would go to the surgeon instead. They called that day and wanted us in their office the next day and also said that a neuro oncologist would be there and that would be his doctor. That was scary. What were they going to tell us?
I spent 30 seconds crying and then put on my helmet. There was work to do. I started phone calls around the country immediately. Do we sell the house? Whatever it took to get the right surgeon and aftercare.
We walked into the surgeon's office and he told us that the tumor had hemorrhaged 3-4 times. He couldn't see the tumor anymore because of the blood clot but suggested it was gone from blowing apart. He was surprised that my son hadn't lost his vision. The clot was 1mm from his optic nerve. The aversion to light wasn't from migraines but from the clot, which does the same thing. There was no time to prepare psychologically for anyone in the family. I had to do my homework to make sure we were at the right place for surgery which was 6 days later. The phone lines and computer were constantly buzzing. They got labs beforehand: *Important - get all your hormmone levels beforehand so you have a baseline. My sister and I took my son on a road trip to L.A. to have a few consults. We ended up going home with our original surgeon.
Yes, all surgeries are so different, especially with this tumor. How the pituitary will function depends a lot on the damage and where the tumor was located, ie where it was pushing. The surgeon said he was a lot sicker than we could have imagined. The clot had worn a hole in the dura (leathery shield around the brain). Because of the MRI pictures, somehow I'd figured that pituitary was in front of the brain, not in the brain.Denial? Actually, it's in there but in its own little pocket by itself. The clot had also worn away at the bone you drill through (transphenoidal surgery)so much that the surgeon hardly had to drill - it just fell open, was like a soft boiled egg. Also, his pituitary was smashed flat because the clot had taken up all the room.
We were told that the pituitary doesn't like to be messed with, not even looked and can shut down just for that; that my son would lose part or all function of the pituitary and would most likely get diabetes insipidus.
He has had no vision loss, no di, no hormone issues. Although labs were normal before surgery the tumor had exploded by them. Within 2 weeks after surgery my son was growing a LOT (was about 5'5 before), is 5'8 1/2" now, got peach fuzz, voice was cracking. The pressure taken off the pituitary definitely produced things we hadn't known were missing.
Anyway, he was discharged after 2 1/2 days, very afraid of a cranial leak. The 4th year resident who discharged him told him that it wasn't just 30 days to beware but that you could have a leak for years after. That did a lot of damage. It set off all kinds of anxiety for our son. The surgeon said that wasn't true but when words are said they're said.
We were pretty much left in the dark after surgery. Our surgeon was wonderful but you see them for checkups. He even patiently sat while we went back to his office for our son to ask more questions, hear us. There was no one else to go to. Our son was very tired, still is. We were told he should be back to normal 1 week after surgery, including no fatigue. I see other people post that they were told they'd still be recovering a year or two later. Because he was so tired we were so concerned because we were told he shouldn't be. It was like being in the forest alone. The pediatrician called often but it was out of her league. The endo's and surgeon's office said call the pediatrician. I got nowhere. This went on for months. Now we're seeing a new endo and being heard. So far all labs are normal. Fatigue may be from anxiety. HE's seeing a therapist who said that it may be organic, keep looking, but also thinks he has a little post traumatic stress disorder. That's what I think.
We changed endocrinologists because the first one said that we didn't need to come to see him any more, that your pituitary either works or it doesn't. He's head of the dept. He wouldn't help us with the fatigue questions. New endo, that's taken 5 months.
Anyone feeling the anxiety, I think cognitive therapy helps and it also gets better getting farther away from surgery. The checkup MRI showed the pituitary still smashed yet working. I call it a God thing. I also think that if the brain is such an incredible computer that we still don't understand and is aware of surroundings constantly, won't it know that it's being invaded?! Alert, boundaries have been compromised! I think the brain goes into an alert mode to watch out for another boundary attack i.e. fearfulness, anxiety.
Hope this helps someone. Oh - the surgeon told my son that when he awoke he'd have nose packs that wouldn't feel good and that he'd have a catheter and the only reason he was telling him was that he knows that any teenage boy would have that bother him more than the thought of surgery. So true. My son worried more about that then the surgery (although he's processing the surgery now) and as soon as he could talk wanted it out (the fatigue, drugs left him without talking for a day). We stayed right by the bed, pulling a chair to touch his arm, feet, anything constantly. He never had one parent out of the room and I never left the hospital room but for coffee twice and a shower once. When he could move his hand he'd point to be right near him and his blood pressure would go down. He said later that even if someone was behind the bed and he couldn't see us it was scary because he didn't know if someone was going to come into the room and do something else to him. If anyone has kids, try to stay where they can see you, touch them. They're exhausted but on high alert. He was on tylenol the 2nd day and then at home with tylenol for a day or two and that's it. He gets intermittent pains in that area.
**It's not just the surgeon, but the hospital team. The ICU doctors kept trying to move our son off the ICU because he was stable but we knew the surgeon's plan! Know your plan and tell your family to stick by it! The surgeon didn't want him off ICU. THe floor doctors constantly were saying they're moving him and I'd say call our surgeon, no you aren't.
**Ask around for a good endo who has a lot of craniopharyngiomas!! That's you!
**Get a copy of all labs and take them home, have all sent to you.Learn to read them.
**A neuro phychologist is good to have after recovery and add school work to the test if school age.
**Vision - neuro opthalmoligist - get a vision field test and any else.
**Know the symptoms of adrenal crisis, working hormones or not.
Can't imagine going through this without the Lord, who gave us calm in the midst of terror. We had our crying points, but was still filled with calm. the "peace that transcends all understanding" which only God can provide. Blessings to all.
