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tumor or colloid cyst or?

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Old 09-05-2008, 12:11 AM   #1
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Confused tumor or colloid cyst or?

Hi All,
I am new here. My 27 yr old daughter who just got back from 15 mo in Iraq went to a small hospital ER in VA with a bad migraine Wed, Aug 27. They took 12 hrs to see her and then 3 hours later on Thursday AM she was told she had an inoperable brain tumor that was 1 CM in size.

Needless to say she was moved later that day to a larger hospital in Richmond , VA. We live in Texas so it took me till 8:30 AM on Friday to get to her room. I find out she has blurry vision, double vision in both eyes (different type on each size), migraine on the left side, weakness on her entire left side, walking to the right, dragging her left fool, and her tongue at rest went to the right. She was also extremely sensitive to light and sound. But surgery had been mentioned. We wanted to take her back to Texas or to John Hopkins but when we saw what was going on there did not seem to be a safe way to move her.

We waited for her MRI for 20 hrs (inpatient took second place to out patients) . In the meantime saw many Dr's but not her neurosurgeon. We did not see him till Tuesday when we held her hostage from the OR transporter. No talk with surgeon. no surgery. What we saw were many Dr's wanting to check her eyes and left side weakness. None of them new anything and could not help us. Did I mention this is a teaching hospital. This can be good and bad.

At some point one of them said, she had a "mass" and they did not know if it was a tumor. Hum, what does that mean? Please don't think we ever got an explanation. We were told they would take it out and after 1.5 days in the ICU and 1 day on the ward she would go home. Then another Dr said it would take 2 weeks and another said 1.5 weeks. They all ast least agreed that the "mass" should be benign.

We were told it was a pituitary tumor and then it wasn't, it was in front of the pituitary gland but on the optic chiasm. Then it was a pituitary tumor again pushing up on the optic chiasm. But somehow none of this had anything to do with the issues on her left side and for that the surgeon would have to send her to a neurologist.

Her surgery was Tuesday, two days ago. The surgeon that came to talk to us, not her surgeon but instead the chief resident told us the cells removed were pretty abnormal. But the preliminary pathology report is "normal". We are still wondering exactly what that means. She it still in the ICU and now we are told she cannot leave until the leaking spinal fluid stops. Well this is understandable but why didn't they say so in the bginning. The left side issues have disappeared, those were the issues that had nothing to do with the "mass". She is no longer sensitive to light. Her head now hurts all over instead of just the left side but we see that as good.

We asked if they got it all and he said they did not know. Another MRI was done last night and much to my shock he (chief resident) walked in to see her today while I was there. I asked what the MRI results were and he said, "we're waiting on the final pathology report". I asked if they got it all and he said, "no". So then I asked if they had at least got most of it and he said, "no". I asked if it was a tumor because we were told they would know when they removed it. He says they don't know, it could be a cyst and he mentions colloid but quickly says he doesn't know and we have to wait for pathology. We asked how many of these surgeries our surgeon had done and we were told many, many like 2 a week. I am beginning to wonder. I feel like I am pulling every answer by force from his (chief resident not her missing surgeon) gut. It is so fustrating. I was told not to worry that she now has DI (water diabetes) that it should be short term. But what I read says once you get it that's it. So what's right? Then they can't take out the tube because spinal fluid is still leaking and the nurse mentions CSF. The DR as high tailed it out of there, I'm sure in fear that I might as another question. to which he could not find a one word answer. That would require him to talk. :-0 So I get back to my hotel and look it up, hence me now writing this dissertation (sorry). Multiple surgery's and shunts. I'm getting scared.

I know I have rambled but has anyone had a similar experience? Does the DI go away? How many people end up needing a shunt? Do these cyst go back? Do they usually not get it all?

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Old 09-07-2008, 01:30 PM   #2
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Confused Update

They did not get all of the mass because leaving it in was less dangerous than taking it out.

We still don't know what the mass is. How come I have the impression so many people know before anything is removed and 5 days post op we still don't know. :-(

She is still in ICU because of the CSF leak and the DI. But she is better. :-)

My heart goes out to all of you that have gone through this.

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