update on Scott

[hilary1617]

Scott, glad you have had what seems to be a thorough workup. Should you decide to go the surgical route for the pontine cavernoma, I have been researching neurosurgeons (for my son) and can maybe help with some suggestions. Don't trust that noggin to just anyone. Also, one of those super-long pregnancy pillows might help keep you on your side by cradling you - that's the carrot, where tennis balls are the stick. All the best!

 

[DSRIGGS]

Thanks ladies....still trying to figure out what all of this means. Hopefully like my buddy Larra says it is something I would have never known about had I not had this MRI, but I won't lie, this has me a bit freaked out because these things can have degenerative neurological impact and kill you.....so hoping that isn't the case for me.

So today I can actually see imaging from the MRI on Mayo's portal (really cool, of course I have no idea what I am looking at ) and I just read the radiology report. I have three findings from the MRI. It says:

A small focus of decreased T2 signal in the left pons, blooming on gradient echo imaging, with adjacent linear
enhancement is most consistent with a cavernoma and adjacent DVA. (Developmental Venous Anomaly - bunch of small veins around another vein) There is another incidental venous angioma in the right frontal lobe. Minimal white matter leukoaraiosis, remainder negative. (I am not 100% sure what that means but from what I can gather it indicates something has caused cognitive loss)


So this is what a DVA looks like:

this is what a cavernoma looks like:

 

[DSRIGGS]

Scott, glad you have had what seems to be a thorough workup. Should you decide to go the surgical route for the pontine cavernoma, I have been researching neurosurgeons (for my son) and can maybe help with some suggestions. Don't trust that noggin to just anyone. Also, one of those super-long pregnancy pillows might help keep you on your side by cradling you - that's the carrot, where tennis balls are the stick. All the best!

Hi Hill....BTW, how is your son doing?

Thanks for the suggestion. I am hoping like heck I don't need surgery ever for this, because from what I can tell it is very much a last resort thing because that area is an incredibly risky place for surgery with some pretty sizable risk for really bad things. If I did get to that point it would definitely be a Mayo or other world renowned Neuro Surgeon because as you said, I aint trusting my noggin to just anybody.

 

[aaa]

I just read this thread.

I'm glad they've given you some information; but I can empathize with having to digest it all and what it means for you going forward. I hope your continued research will give you some peace of mind.

 

[hilary1617]

Hi Hill....BTW, how is your son doing?

Thanks for the suggestion. I am hoping like heck I don't need surgery ever for this, because from what I can tell it is very much a last resort thing because that area is an incredibly risky place for surgery with some pretty sizable risk for really bad things. If I did get to that point it would definitely be a Mayo or other world renowned Neuro Surgeon because as you said, I aint trusting my noggin to just anybody.

Hi Scott, I have no doubt you'd make a good surgeon pick! I've narrowed it down to the top three for when the time comes for my son.

He's doing okay - but we're in a weird waiting game - they need to take out his tumor, but doing so will disrupt his pituitary for about a year and he needs the pituitary to work to make the best transition from boy to man. He's 13 and as the watched pot never boils, there's delayed onset of puberty. Also, the recovery is supposed to be horrible for about 6 months, so we want to time it for the beginning of summer, hopefully in a year or two if we can hold off that long.

To hold off surgery, he's on a drug, ketoconazole, that is actually an antifungal but which has a side effect of temporarily shutting down adrenal cortisol production. Problem with ketoconazole is two-fold (1) it's risky, to such a degree it is banned in Europe as it is known to cause liver damage, sometimes irreversible and sometimes even fatal and (2) there's a negative feedback loop in which the absence of cortisol triggers the hypothalamus to release CRH, which signals the pituitary to release ACTH (which his tumor is already overproducing), that triggers the adrenal to produce cortisol - so the needed dosage keeps creeping up and the higher the dose, the greater the risk. But the drug has been very effective. He immediately lost 5 pounds and his high blood pressure, terrible insomnia and disrupted sleep disappeared. This has made him much more energetic and happy.

Anyway, I'm glad you have some answers although it all seems confusing! Hope better sleep does wonders for you too!

 

[DSRIGGS]

I am actually familiar with the ketaconazal from the antifungal use as Cameron had some weird stuff a couple times. It amazes me all the off label uses the find for this stuff which always makes me think how much of these meds are accidents kind of like the 3M super glue that ended up being post it notes, or the infamous blood pressure pill Viaagra that we all have hear of for other reasons.

In any case I am glad it is having a good effect for you son and I feel for you with the waiting game. Best wishes for your guys and I hope it works out the best for all of you.

 

[writegirl]

Glad you're doing okay and have some answers, Scott. I'm sorry that the answers are the kinds that lead you to more questions. Our bodies can be very frustrating and confounding places to live, but I guess we're stuck with them. Enjoy being home, take some deep breaths, and try not to get mired down in the "what if" scenarios that can drive you nuts. I know, easier said than done.