Brain Pain Mom

Jennifer, I did read your post to me on the other thread.

How wonderful (!!!) that Crystal got relief from the LP. Ouch, about hitting the nerve.

I was reading your post while talking to an "experienced" mom on the phone, and I asked what she thought.

She said she'd be leary of LP's every week. Me, too. I would (for Anna) worry about CSF leaks.

My mom friend and I both pondered the difficulty of finding a neurosurgeon to shunt when pressure is 20.

However...Dr. W has his network of doctor friends, and maybe he could work something out.

I would see how long Crystal continues to feel better. Go for some more LP's. See what happens. Then re-evaluate.

I met a woman in Minnesota who was having multiple taps to drain pressure. But each one was becoming more difficult to do. Where she lived she said only one doc would agree to it, and it was an expensive production each time it was done.

Bottom line--Crystal feels better one week later. That is hard to explain (because of CSF replenishing), but we'll take it as a miracle, right

Is Crystal still taking a diuretic?

I haven't posted about our appointment with a neuro in Madison on Monday. She is making some recommendations to Anna's current neurosurgeon. Anna may be in for some really difficult testing. I need to hear back from the nsg about it.

But I'm still thinking I want to see Dr. W in June for his input, and I'd love to meet you guys. We'll be right there!

My best to you and Crystal!

Cheryl

Hi Cheryl-

I notice your post earlier and tried to reply but my computer had an annurism and would not cooperate.

I am so sorry that Anna yet again needs more testing. The poor girl has been through far too much. I wish you both the best of luck. Please keep me posted on the details.

Crystal is still lucky enough to have a pain level of a 4 and is looking forward to her school dance on Friday and eighth grade graduation next Thursday.

I spoke with Dr W yesterday and Crystal's results for her labs were all normal (yay)! He is impressed that her pain level is staying down and we will be seeing him on Friday morning.

I will be asking many questions. He said yesterday that he is thinking of tapping every 2-3 weeks for a couple of months and then possibly looking into shunting based on the results. I do not want to expose her to leaks and infection...and let's not forget the risk of hitting the wrong nerve and loosing all feeling.

Please keep me updated as to when you will be in town. I was telling Crystal and I know she would love to give you a big hug as well as Anna for pointing us in the right direction.

I will have to update Crystal's picture with one from getting all dressed up for the dance!

I will look forward to seeing the new photo. How awesome, that Crystal is functioning

I know what it is like when there is little functioning. It is a heart breaker for Moms.

If you see this before your appointment, give Dr. W my best.

Anna's nsg would like her to wean off opioids before doing a workup. I believe the workup will include a myelogram, cisternogram, and ICP monitoring. But her G.P. doesn't want to start a wean right now. Doing the wean is going to take probably fifteen weeks or longer. So we are just going to have to be very patient and wait this out until something gets done.

I'm good at being patient, but I have to admit this is will be a long hard wait to try and get some answers for her.

I'm still thinking of her seeing Dr. W in June. I do want us to "have" a neuro, and I guess we should probably see him more often! Haven't seen him since summer of 2008!

Let us know how thing go for Crystal. Tell her I'm thrilled her pain is down

Cheryl

I am so glad that you reminded me to upload Crystal's picture! I keep 20 watt bulbs in all of my lights for her, so the lighting is terrible in my house for pictures. When she goes to the dance on Friday I will get some outdoor pictures.

Poor Anna! Didn't she have a really hard time with the ICP monitoring the last time with pain? I thought I remembered that.

Do you think she will make it through getting weaned off of the opioids without too many withdrawals? I hope her pain tolerance can handle it. I really feel for her. I will definitely tell Dr W you say hello and send your best. He is such a nice man.

Oh man, she is gorgeous. Tell her I said she looks amazing for her school dance and I just love that dress on her Glad to hear she is doing better!

Thank you so much! I can't wait to get some pictures in better light. I wish I could be a fly on the wall at the dance.