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#68932 by PocketGroovesGSO
Sat May 30, 2009 12:24 am
I'm not even sure what to write after reading all this... I'm sorry to read this about your grandson Philby. And your son as well RA. I'm not terribly religious, but I'm thinking of you and your family Phil. I'll be sending love and positive energy. Be sure to let us know how everything goes at the appt on 06/02. :)

#68933 by PocketGroovesGSO
Sat May 30, 2009 12:28 am
sanshouheil wrote:Man, you know were a bunch of old farts sitting around here talking about our grandkids. :lol:


That's all good though Sans. :D We're lucky -- not everyone has this kind of support for situations like this. :)

I don't have grandkids, but I'll read about you old farts and your rugrats! :lol: Maybe I'll learn something to help me with my daughter.

#68972 by philbymon
Sat May 30, 2009 12:40 pm
Hey, at least our convos don't revolve around our aches & pains & latest operations...

#69351 by philbymon
Wed Jun 03, 2009 1:59 am
Well, we went over the MRI in detail with the pediatric neurosurgeon today. He showed us where Jace's brain stem actually bends forward, due to pressure from the cyst, evidently. He claims the stem should be rather straight up into the brain, but it clearly bends forward at an alarming angle.

He strongly suggests surgery, & soon, due to pressure on both the brain stem & the cerebellum. When asked if these things just disappear, or drain themselves, he answered yes, sometimes, but added that he could virtually guarantee that this one will not just go away on its own, & by waiting too long, there's a chance of permanent damage to the affected areas.

He suggests a shunt, which will remain in the boy permanently. This thing will drain his excess fluids from his brain into his stomach area, where it will be absorbed with no ill effects. Unfortunately, this is a situation that will require further surgeries as this shunt eventually clogs up, because it will need replacing when this occurs. Looks like he's in for a lifetime of surgeries?

We will need to keep watch on him for indicators of fluid build-up as he grows.

The danger is as minimal as can be, since the cyst is basically on the outside of the brain, & this is not a case of hydrocephalus (commonly called "water on the brain," where there is fluid build-up on the central areas of the brain). He does seem to have an enlarged head due to these problems, as well, probably due to the pressure within.

There are no guarantees as to whether this will solve any problems he has in his motor skills development, but it supposedly can't hurt, & MAY indeed take enough pressure off certain areas that major improvements will be possible, provided we have caught the thing in time.

Since the mouth muscles are such a complex system, which are also controlled in his affected area, this may also be his entire problem with his speach development problems, as well.

I am still thinking about a 2nd opinion, but his arguments about the need for doing the surgery soon may make such thoughts moot. He has set up another appointment in two weeks' time, after he determines exactly what type of fluids the boy is suffering from. If they are the consistency of cottage cheese, it will make the surgery much more difficult & dangerous, but thus far, it doesn't look like that, thank heavens.

There haven't been any hearing tests, yet, but they have been scheduled. I honestly can't believe that that is any part of his problem. I can give him complex directions, & he follows them to the letter, indicating that he both hears AND understands what I'm saying to him. He simply cannot seem to vocalise, & has yet to make ANY consistant understandable words. He HAS learned some sign language, however, which he uses consistantly well.

Eye tests have also been scheduled. He may have a "lazy eye," or this, too, may be a result of his cyst. There are so many variables that this thing could affect, that it seems negligent not to take this Dr's advice, & to have the surgery performed, & soon.

I have no fears about his cognizant capabilities, either. He has proven to be quite capable of solving many problems on his own (unfortunately for me, the babysitter...LOL)

He has found that he can whack at wind chimes with a broom. He can open the front door, AND the screen door, & escape, if I'm not watching. He'e learning to be "sly" about trying to get away with stuff when I tell him "no." He's coming into his own in spite of his difficulties, & is developing his own unique personality.

He gets very frustrated at times, due, I think, to his difficulties in communicating, & thus he screeches a LOT, to show virtually any strong emotion, be it anger, or glee, or whatever. I often wonder if the neighbors think I'm beating him 1/2 to death, with all the screaming going on.

He seems to have adjusted to his problems as well as possible, & is finding ways to get through to us in spite of his difficulties. He also is overcoming his balance problems, & doesn't get as angry as he used to when he falls, but he nearly always has a nice big purple lump on his head, & sometimes even two or three.

It's gotta be tough being him.

#69382 by gbheil
Wed Jun 03, 2009 1:44 pm
Shunts are a pain in the ass. Take from me I have worked with hundreds of them. Some even have a little bulb that has to be pumped several times a day. They all require occasional replacement surgury.
The risk of infection is also quite high.
I dont want to come off all doom and gloom brother I just want you to have enough info so you can ask the right questions and make a truly informed decision.
Always, ALWAYS, get second and even third opinions if you dont like or understand what your being told.
Medical people are people and we all make mistakes.
Read up and ask ask ask then ask again!
God bless and God speed.

#69385 by ratsass
Wed Jun 03, 2009 2:09 pm
My son, Clifford, who had all the problems from birth, had to have a shunt put in, no choice in the matter as blood from the initial hemorrhaging in the brain had caused protein to build up inside the walls of the natural draining tubes from the brain. For all the brain's abilities to take over or repair damaged functions, it doesn't account for slower draining and keeps producing the same amount of fluid, thus the shunt was necessary. It had the little pump on it, kind of like the little bulb type primer pump on a lawnmower. We didn't have to pump it every day. Just checked it occasionally. Push it in and if it pops back out, the pump is working fine. If it stayed depressed, something was stopped up, though that never happened in Clifford's case. The first shunt started wearing through the skin around his collarbone and so they had to take it out and put one on the other side. This gave him two little moon shaped scars on the right and left sides of his forehead, close to the hairline. When people would ask me about those scars, I would reply, "That's where they removed his horns. He is MY son, afterall." :twisted:

#69387 by philbymon
Wed Jun 03, 2009 2:21 pm
This guy's talking about using a valve that's programable with a magnet. I guess I'll hafta keep him far away from my speakers if we go this route.

#69393 by gbheil
Wed Jun 03, 2009 5:19 pm
I am aware of programable cardiac devices, but not shunt valves.
May be a newer technology than I have been aware of, as I have not worked pedi in many moons.
You get a second opinion!
And I will shut up and pray!!

#73369 by philbymon
Wed Jul 01, 2009 9:13 pm
Update - the operation is supposed top be tomorrow, but we still don't have a set time! The Dr's office hasn't called us with one, & I am seriously PO'd!

We're leaving in an hour, staying overnight. The recoup time is guessed at around a day, maybe two, so I won't be here until Fri or Sat night.

Y'all be good, & wish us lotsa luck!

Boy I hope this thing works! Jace has been an unholy terror for 2 days. I think he knows what's up, cuz he ain't no slacker. I'll bet he can't wait to cuss me out when he wakes up! LOL (I have a funny feeling about that sorta thing...when Ian was 3 or 4 he called me a dickhead in front of a stranger, once...he didn't learn that at home!)

#73372 by J-HALEY
Wed Jul 01, 2009 9:38 pm
Good luck Philby I hope the surgery goes well and you don't get cussed out!

#73373 by ratsass
Wed Jul 01, 2009 9:46 pm
Good luck Philby. I hope you DO get cussed out. That would mean it was a success. :)

#73377 by neanderpaul
Wed Jul 01, 2009 10:02 pm
Prayers tonight Philby.

#73379 by gbheil
Wed Jul 01, 2009 10:10 pm
When you schedule such operations they are often placed on an "on call " list. I am sure your wait is just beginning, but be patient, and I'll speak with our Father. :wink:

#73395 by Debbiestrange
Thu Jul 02, 2009 12:25 am
I can honestly and truthfully say "I know what you're going through". Is the cyst on or near the pineal gland? The symptoms you describe are exactly the symptoms that go along with the tumor I have on the pineal gland, which is in the middle of the brain. If it makes you feel any better...I've been told that cysts are much better than tumors...not sure if that is for real or not, but from the extensive research I have done on my own case, cysts seem to be common in children...but I agree...the LARGE adjective would scare the crap out of me too.

I wish I had words to say to give you peace...I've been looking for those words for myself as well.

Thinking about you and the little guy...and you know..makes my problems seem a bit less important...I've lived half my life..he's just beginning...sometime life really f'cking sucks...

Keep us posted.

#73437 by 1collaborator
Thu Jul 02, 2009 12:45 pm
Best o luck Phil . Ill be thinking about the little one and sending out those prayers .


Its another day in Paradise !!!

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