Lindsay's ICP monitoring update

[Alli40]

Hi everyone,

Lindsay had her ICP monitoring procedure today. She came out of it very well. She felt quite ill for a few hours and then really perked up. She ate more this evening that she has eaten in days. They are keeping the numbers hidden from us as best as they can but I sneak over and look.

I don't think it is showing too much pressure but the numbers have gone into the negatives which seemed to cause a little more attention from the ns. So much so that he made some demands of the nurses (I think to record more data) that they didn't seem to happy about.

Does anyone know much about the numbers? the negative numbers?

I am just home to get a little sleep and then back to the ICU.

Thanks
Christine

[AMBush]

the numbers have gone into the negatives which seemed to cause a little more attention from the ns. So much so that he made some demands of the nurses (I think to record more data) that they didn't seem to happy about.

Does anyone know much about the numbers? the negative numbers?

Thanks
Christine


When they did Marijke's ICP monitoring, she was in the negatives as long as she was more than 45 degrees upright. The nurses thought the equipment wasn't working and called the NS in -- he shrugged it off and said it just showed the shunt was draining really well. Marijke has slit-like ventricles and has had chronic headaches for some time. We went to a NS in Dallas for a second opinion and she said that it looked as though the shunt was overdraining, and recommended that we bind Marijke's abdomen to "retrain" the shunt. All in all, the NS's here in Texas seem to see overdrainage as an acceptable risk. Marijke seems to have adjusted to it relatively well, though, so we just stay a little more vigilant...

[Nick,Brian,andJon'sMom]

It sounds like she is overdraining when the numbers go into the negatives. Overdraining gives headaches just as much as high pressure.

Hope that you are getting the answers that you need. How come they aren't letting you see the numbers?

Marcie

[Alli40]

They believe that it needs to be a blind study and so they don't want Lindsay's reports of pain to be influenced by the numbers on the screen. I guess they figure I would influence her? and I thought I had a pretty honest face.

We are home. They have determined that her present problems are not caused by the shunt because there was no reports of increase or changes in her pain as her pressures changed. In other words her readings were from 11 to -8 but she reported a steady 6-7 headache. What did increase when she sat or stood was her nausea and that was also when her icp numbers went into the negatives but you know I just don't know enough about this to argue.

I am very sad today because we went through this and we still don't know what is wrong. She is home and tired and unable to function in her life but no one knows what her problems is.

The ICU team contacted her neurologist's office and requested that they see her sooner than later. Hopefully they will help.

[Nick,Brian,andJon'sMom]

I am sorry that you did find the ICP monitoring helpful. Do you know what the numbers were when she was laying down? It sounds like to me soon as she stood up she started overdraining and that could incease the nausea. I would press the NS and ask why didn't he think she was overdraining? I know for Jonathan laying down makes him feel better because the pressure is more even. IF you aren't happy don't leave without getting answers. You know your kid the best and how she feels. They only saw her for a small moment in time when you are with her the rest of the time.

Marcie

[DystoniaGal]

I am so sorry that they didn't anything out of this.

I spent a week in ICU in summer August of 2007 after not being able to hold food or lquids down for 2 weeks. I was in the negatives in most positions but being upright made it a whole lot worse. My NS also had the monitor covered so I couldnt see my ICP. At that time I had a programmable shunt so we adjsusted my shunt until I started feeling well again. Fast forward to 2008, in march, I started taking a turn for the worse again, so we went to the extreme, we tied off my shunt and in a few days that was the best I had felt in years.

My hydro was caused from an infection I had in my brain. So we say it went into remission and I had my shunt removed in April of last year.

I am not saying that your daughter needs her shunt removed. But it may be time for a revision with some of the new options out there for shunts.

Suzie

[Alli40]

It sort of feels like they were focused on finding specific trees and so they don't see the forest. Lying flat she was 11, 40-70 degrees she was around 4, and then when she sat up she went to -8 or -7. Her head pain stayed pretty constant - it has been for about a month - before that it came and went. What did increase was the rest of her bad feelings.

I wish I knew more about this. I like this ns and most of me wants to just believe in his analysis of the data but part of me thinks (even if this is totally irrational) that she will be unwell until this shunt completely dies and they have to fix it. I think she is over draining and they are looking for a textbook presentation and dismissing what is there when it doesn't match.

I also feel like I can only push so hard or they look at me funny. I just want her to feel well.

In 10 days we go to have the stitches removed and I will try to come up with another way to express my concerns without sounding crazy with doubts in the face of scientific fact. We also see the neurologist that day (not holding my breath) and once again if they want to try medication we will go for it. Anything to make her feel better.

I also got a call today from pain management. While I know we have to do this it makes me incredibly sad to think that at the age of 12 we have to work on how she manages pain instead of figuring out what is wrong. Casts a shadow across the future.

Sorry for my gloom and doom. I appreciate being able to share my thoughts here.

Things will get better.
C.