Son's MRI Thursday-what to expect?

[jonahsmom98]

Well it's getting down to the wire and my son's asking questions. I don't really know what to tell him. They're doing a brain MRI with and without contrast. He can't eat or drink before he goes.

When they give him the contrast, will he drink it, or will it be IV? How long does it take?

And for me, how long before the doc lets me know something?

I keep going back and forth either praying that his tests are normal, or that if there's something there they find it.

I'm about to drive myself nuts! It's the waiting. I just wanna know what's wrong so we can get busy fixing it! Sorry, just stressing. He's my child. I'm supposed to protect him and take care of him; very impatient I guess.

[rumpled]

If it is a pituitary tumor, it is 99.9% benign, not the same thing as the rest of your family at all.
While there are disorders that are genetic, they have tumors on multiple endocrine glands - and that does not appear to be the case here. So some do a familial link - but thyroid cancer is not usually linked with that.

[jonahsmom98]

Thank you so much! I was wondering about the results and whether or not they would give me a copy.

I have decided that if he does have a mass, we are going to try St. Jude before we do anything. It's only 45 minutes from my family (Northeast Arkansas is home-we moved here a year ago because of my husband's job). They will take him before surgery, and I'm gonna need my mom!

This is crazy! I feel like I'm jumping the gun, here. My son doesn't have a brain tumor! It's just surreal. But, I wanna be prepared and have an idea of my next move, just in case. I know me, and if I'm not proactive, I'll go crazy.

When I was lying in bed last night, I wondered if there is a familial link with endocrine tumors. My mother-in-law is battling thyroid cancer and her father died a few years ago from pancreatic cancer. If my son has a tumor on his pituitary, I think it would be strong evidence that it is. Just thinking...

[rumpled]

When I get an MRI, I always feel like I am darth vadar - since they strap you into a large mask that has a mirror on it so you you see out (mostly your feet!) so you can make lightly about that too. The purpose is to keep the head someone still and for marking (ie where is the center of the head - they need landmarks to find things).

They can put cushions under the legs and sometimes I even had them tie me to the bed (they have velcro straps, nothing kinky!)  as it was more comfortable as the platforms are narrow and you end up moving by falling to either side. When I became huge (I had Cushing's), then I was squished in the machine and well, I was not moving, but it was uncomfortable...  So let your son determine how he wants to be put in the machine. He will be in there a while.

Let them know ahead of time that you want a CD copy - so you can walk out with a CD copy. Then call 24 hours later and ask them to send you a copy of the final report. That way you have a copy to send to doctors if you choose to travel - which is often the best route to get the best surgeons.

[enzymelover]

Well,  with vision loss, morning nausea and dizziness, it does sound classic for a tumor of some sort. It is true that the vast majority of pituitary tumors are benign, but that doesn't mean they can't cause huge problems. Some tumors can be treated with medication. If your son is diagnosed with a pituitary mass, you will want to find the best possible neurosurgeon, one with lots of pituitary experience, and hopefully, if surgery is necessary, the mass is small enough for endonasal transsphenoidal  surgery, for a less painful, quicker recovery. My son didn't even need to take anything for pain after he came off his IV.

Pit. tumors are actually more common than I ever would have thought, and there are many good surgeons and endocrinologists around (although finding them nearby doesn't always happen). Try not to worry. Wait and see what the MRI report describes and take it from there. I believe your son will be in good hands.

Every case is different. My son had no vision trouble, but that was because the mass was growing downward, away from the optic nerves, and unfortunately did a lot of damage to his pituitary. As a result, he must take hormone replacement med., probably for the rest of his life. And with craniopharyngiomas, there is always the possibility of recurrence of the tumor.  

Please let us know the outcome of your son's MRI. You will get lots of advice and information here, which will hopefully help you feel confident in your decision-making.

Enzy

[jonahsmom98]

Well he's grown 6 inches in the last 8 months (that we're aware of-that's when he was measured, don't have the 6 month measurement). He was up to my chest this time last year and he is now a half inch taller than me. 5'4 and 1/2. So really, the 6 inches is a rough estimate.

The most alarming thing to me is that he has almost completely lost vision in his left eye. Had this not happened, I probably would have just chalked his rapid growth up to puberty. Then came the dizzy spells and "morning sickness". After doing some research, I found this forum and got some really good advice. Took him to the pediatrician who ordered blood work and the MRI.

Pediatrician told me that he might possibly have a pituitary or pineal tumor that could be large enough to affect his vision. He also told me that most of them are benign, but still cause problems.

I've tried to research on the internet, but most of the info is about specific types of tumors, and all that does is make me even more anxious.

Has your son had to have treatments or was the surgery enough?

[enzymelover]

Um... I was hoping you wouldn't ask that question. I don't mind telling you, it's just that I didn't want to needlessly worry you. My son was diagnosed with a pituitary cyst/tumor, which turned out to be a craniopharyngioma. He had an excellent neurosurgeon, and recovered very quickly from the surgery.
If your son has increased growth hormone and testosterone, a pituitary tumor is a possibility. How much has your son grown in the last 6 months?

[jonahsmom98]

If you don't mind me asking, what is your son's diagnosis. I'm asking because a lot of the tumors I've read about talk about lower hormone levels (like your son), but my son has an increased growth hormone and increased testosterone??? Thought maybe you were better-read on this topic!

Thanks

[jonahsmom98]

Thanks for the info. My son is 11. He isn't claustrophobic, that I'm aware of. Usually if you tell him it isn't gonna hurt, he's not afraid. Of course I don't tell him it won't hurt if it's going to. I plan to tell him all the details the morning of. We made a CD of his favorite iTunes yesterday. Have to remember to tell him that they can hear him and get to him if he needs anything. That will relieve a lot of anxiety, I'm sure.

[sugarsmommie]

I've had many, many of these since 2004. My MRI's have generally taken about an hour total. 45 minutes for general pictures and then they pull me out long enough to give Gadolinium (contrast) and then finish up during the last 15 minutes with the contrast in. Is your son claustrophobic? I am and generally have to take something to calm me down. Other than that...the test iteself is nothing...just noisy and you have to lay still for the hour. Generally it's about a week here before you get results back. And yes, you can take favorite music to listen to. The techs can see & hear you the whole time so if you need anything they're right there. Hope he does well with his testing!! Good luck and keep everyone posted on the situation!

[enzymelover]

How old is your son?  Mine was 10 years old when he had his first brain MRI.  He was a nervous wreck, and was unable to do it on the first try. The technicians thought he was claustrophobic but it was really extreme anxiety, and an inability to deal with stress due to a deficiency of cortisol. On the second try, they said if he couldn't do it he would have to have general anesthesia. That scared him even more.
But they gave him time to have a good cry and then calm down, and we were blessed with a wonderful "motivational" nurse who stood at his feet the whole time (it took about 45 min.) and helped talk him through it. I was allowed to stand at his feet also (with earplugs!) and coached him to breathe calmly and recite song lyrics to take his mind off the noise and discomfort.
Somehow, he actually got through it, and wasn't even bothered much when they pulled him out to give him the contrast dye in his IV (because at that point they said he would be done in 10 min.).
He was offered a choice of CD's to listen to, or a movie to watch during the MRI, but he declined both due to specific health problems.

He was a bit shaken by the whole ordeal, but he recovered quickly. The doctors were supposed to call me in a few days, but they didn't, I had to call them a week later to get results. (Doctors never call, even if they say they will, they don't). Just go ahead and call them.

If my son got through it, I'm sure yours will to. Be sure he gets water to drink asap after.

[testdeprived]

he will get an IV with contrast..he might taste metal
when i had mine the doc didnt even call..i had to hound them for 2 weeks...disgusting experience.

the mri will be very uncomfortable for him...but make sure he lies still...i hate them