ICP monitoring.

We are in the university hospital in WI, and Anna is getting intracranial pressure monitoring. We got here yesterday, and she had the monitor placed while being awake (yikes). Pretty hard on her. I sat next to her while they did it. First they numbed up her scalp, drilled a hole in her skull, placed and stitched in the tiny monitor wire. She didn't want to be awake for this, but she didn't have a choice really.

Her pressure is normal laying down (around eight). She is going to get up soon to start walking the halls to see if it drives her pressure down.

She is in tremendous pain. Quite unbearable. But they don't want to load her up on meds for this testing.

Probably the hardest thing she has been through. Hoping it gives some answers, but that may not happen.

It has been one really tough month!

Cheryl

Cheryl,

I'm sending prayers your way...I cannot imagine what you all are going through. Please know that your posts touch many of us here.

Ann

Cheryl,

Thanks for keeping the caring bridge updated. What a long, painful road Anna has been on for this test! I hope you get the answers you need. And I hope Anna can get home to her own bed shortly! I'm sure you are all anxious to be in one place.

I had to sit by Robert once when he had a painful, invasive test. It was so hard to keep my composure so as not to upset him more. But, boy, did I fall apart later when it was just hubby and I.

Sending you much love, affection and hugs.

Cheryl,

Wishing you guys the best of luck! Hope you get some answers soon.

Take care,
mgb

dear cheryl, i'm always thinking about you and yours.

this is the last time for that invasive testing, and i'm so hoping that good answers are obtained at long last.

sending love and hugs your way, dianne

Cheryl, I am so sorry Anna has to go through this. It should be illegal to have to go through procedures like that awake! I am sorry you had to go through it, too. There is nothing worse in this world than watching a child you have brought into this world in pain.

The other day Zoe told me her worst fear is that one day she will wake up with a migraine and it wont go away. Of course, this is my worst fear for her too, since I know it is possible. Praying that this pain brings Anna some answers or that you can quickly move on to something that will.
Hugs,
Cindy

I don't blame anyone for how badly it went. I told Anna that most adults probably do fine having the monitor placed while being awake. She isn't what I consider "normal" or "typical" during these procedures. Her fear is overblown, and it makes for problems. I don't blame her for the fear--it's just part of who she is. Some of it comes from having too many traumatic procedures.

They were giving her repeated doses of Versed and Fentanyl during the monitor placement. A whole lot! But it did nothing. Someone told me I should ask for Versed to be put on her medication adverse reaction list because it doesn't work for her at all. Propofol might be better, but I think one would need an anesthesiologist to administer it.

Cheryl

I'm sure fear and past experience has much to do with it. I also wonder if many of us, rather than becoming desensitized to pain and other stimuli, become hyper sensitized.

I wonder that due to many of us having extreme reactions to sun, Weather changes, odors, lights, etc.

Is she any better today? How are you holding up, Dear Friend?

Three days of monitoring. Normal pressure, though on the lower end of normal at times.

Her neurosurgeon said it is reasonable to try the intrathecal pain pump. But Anna wants a break from doing any more interventions right now.

It was a hard week, to say the least.

Cheryl

That sounds like good news. I can understand Anna's point of view. She had a rough week and sometimes the thought of another thing is too much.

Best wishes to both of you!

Darling Cheryl,
Another horrible hurdle jumped over

































































































































































































































Cheryl darling,
All the pain and suffering...on and on. I sure don't blame Anna for wanting a break.

Sometimes you cannot stand to think of a doctor, let alone face one and hear yet another theory....now let's try...."this!!!" It's just all too much---for all of you.

I am glad the pain pump was recommended, I don't see any other route right now, do you? Dr. W told me he has had a great man people do quite well on them, and here's hoping and praying Anna is one of those. Oh how she deserves a break...all of you do.

Much love to all, and lots of prayers coming your way. I am trying not to be too cynical about finding things to give thanks for on this holiday, with Mom in the hospital and getting nuttier all the time---too many head hits, my pain off the charts and finances not in great shape in terms of long term care for Mom===unless the newest lawyer can find a miracle.

One friend said to me, "Well, at least you are surviving," to which I replied, "yeah, but survivin' ain't livin'." Though it has had to do for many years, for most of us.

I am ever so grateful for all the prayers and good, generous and gracious thoughts you put out into the universe every day, Cheryl. You are one strong cookie.
Love, M

Cheryl darling,
All the pain and suffering...on and on. I sure don't blame Anna for wanting a break.

Sometimes you cannot stand to think of a doctor, let alone face one and hear yet another theory....now let's try...."this!!!" It's just all too much---for all of you.

I am glad the pain pump was recommended, I don't see any other route right now, do you? Dr. W told me he has had a great man people do quite well on them, and here's hoping and praying Anna is one of those. Oh how she deserves a break...all of you do.

Much love to all, and lots of prayers coming your way. I am trying not to be too cynical about finding things to give thanks for on this holiday, with Mom in the hospital and getting nuttier all the time---too many head hits, my pain off the charts and finances not in great shape in terms of long term care for Mom===unless the newest lawyer can find a miracle.

One friend said to me, "Well, at least you are surviving," to which I replied, "yeah, but survivin' ain't livin'." Though it has had to do for many years, for most of us.

I am ever so grateful for all the prayers and good, generous and gracious thoughts you put out into the universe every day, Cheryl. You are one strong cookie.
Love, M




























































































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Love you, Mishkyn! Sorry to hear of your difficult woes

It was interesting to take Anna to her G.P. this week and have him question what he thought were low ICP numbers for her. Normal yes, but on the low side of normal. So CSF leak is still on my mind, but I suppose we need to go back to Duke to explore that possibility...sigh...and it will never happen any time soon when we need a break from dealing with all of this.

Her doctor was at Mayo two weeks ago, and he talked to some Mayo docs about her case and her ICP numbers. I'm glad he did that. But as Dr. Diamond called it--the murky sludge of ICP issues.

Our current neurosurgeon said he never relies on LP numbers. He will only rely on ICP monitoring to give direction in dealing with ICP issues. Anna's LP numbers (without a shunt) have always been high. Her ICP monitoring numbers have never been high. I don't know what to make of that!

Anna is still on pain meds, and there is going to be a extended wean from them. Going so slowly she won't feel the wean. And then looking to the intrathecal pain pump--perhaps in April.

So a long and miserable winter ahead, I fear...

Cheryl