Updates

[Doulos]

I know I haven't been on here very long, but I told Clarice I would post an update. First the good news. We had our baby over the weekend. The delivery was fast. This is our second child and the first delivery was fast too. My wife is a total labor and delivery machine! The baby is going in tomorrow for 2 dislocated hips and will need a brace for some time. Hopefully not long though. She is not in pain at all but it does need to be addressed quickly or it could be a long term problem. Otherwise but my wife and the baby are doing great!

Now about the tumor. My doctor called me today. He said there has been some regrowth. I go to talk to him again next Wednesday. Let me back up a little though. He removed most of the tumor, the part inside the skull, and left some outside of the skull because he thought that was better for me since the surgery was getting long. So I knew they had to take of the rest of the tumor outside of the skull another time. But of course the regrowth is inside the skull and we will most likely be doing another surgery. I hope they can get it all this time.

I do stand corrected concerning the size of the tumor. Either I misheard or the ENT doctor said the wrong thing. When I asked my surgeon today how big it was in cm (as most people have theirs posted so I was curious) he said it was about 8-9 cm. No wonder I had headaches! The part thats left he said is about the size of a walnut. It needs to be the size of gone. Anyways, lots of troubling news, but God is good and will help us though.

[CHD63]

A big CONGRATULATIONS on the new baby girl!  Sorry she is going to have to have the hip procedure and accompanying cast.  Hopefully all will go well with everything and she will be good as new before long.

Also, praying for good news for you when you go to see your doctor next week.  I don't know where you live, but you might want to get additional opinions from other experienced physicians since your case is somewhat unusual.  It never hurts to send your MRI CDs to other places, just for an opinion, if nothing else.  Let us know if we can help with suggestions on where to send them.

Thoughts and prayers.

Clarice

[mk]

Congratulations for the baby. These are exciting times.

On another note:
8 CMs?

To the experienced forum members: I think this is a new record for the forum isn't it?
This was a gigatumor, no wonder why you had a rough time, but I suppose things could have been much worse.
I don't understand though the explanation about the tumor being inside and outside the skull, these tumors are located inside the skull. Did the doctor mean inside and outside the internal auditory canal?

Marianna

[Doulos]

I'm not sure about what he meant when he said outside the skull. Maybe it ran out of room? It certainly looked that way on the MRI. I can ask him when I meet with him next Wednesday. For a while after the surgery I didn't really want to know anything further other than that the surgery went well. The 'what you don't know' routine. I don't have the 3 dimensions that everyone else seems to have but besides being 8 cm he described the part he removed as the size of my fist. Unfortunately he was in an emergency surgery at my 6 week follow up so I couldn't really talk with him. Today was the first day since discharge that I have been able to talk really talk with him. By the way today marks exactly 2 months since surgery.

[sunfish]

"It needs to be the size of gone."  Gotta luv this!  I'm never complaining again about my itty bitty 1.4 cm tumor. Well, probably lying about that . . .

[leapyrtwins]

8 cms is huge and very uncommon.

We had another Forumite - Jon aka Satman - who had an AN that was 8 cms

Jan

[Doulos]

Sunfish- Seems that size doesn't matter in tumors. The symptoms don't seem to match up with size. I read some of Satman's... oh my! He had a bunch of issues with nerves and such it seems. Me, I'm doing good comparatively. Still recovering but doing better. I do have a regrowth that has to be addressed and some that he left behind that I mentioned.

MK- I did find an article where ANs/ Schwannomas can sometimes (rarely) grow outside of the skull too. Don't really understand it all but I'm trying too.

On another note, I sometimes use my hands when talking. So when I try to tell people that the tumor was the size of my fist, I inadvertently show them my fist for a visual representation of size. Then, when I realize what I'm doing, I wonder what people outside of hearing range are thinking! The only thing I'm trying to 'throw down' with is my tumor! Anyways I'm waiting for round two... ding!