Update

[curranmom]

Hello everyone - I am finally together enough to type! So i'm sure you are all blown away with the results as much as I was!?!? I just cant believe it, Sunday before surgery I was just miserable. I leaned forward on the plane to get a bag out from under my seat and i felt like my whole head was spinning and my vision went completely blurry and my head was just aching and burning out of control. I am stummed!

Dr S said he tightened up my dura with fat tissue and fibrin (I think) and there was a slight questionable area but nothing he thought that would cause a huge affect afterwords. Well I have not been able to sleep the last two nights cause the high pressure is back with a vengeance again, the same that I had before and its horrible. He put me back on diamox 1500mg daily and I hate how it makes me feel sleepy, my hands and feet tingle, etc... So I guess his plan right now is just to keep me on the diamox and see how it goes. I promised no matter what I have to do (whine, cry, scream, pout, whatever) I will not go home like I did last time with a high or low pressure headache. I have come out here way too many times and have reached my frustration breaking point. This has been so expensive and hard on our family and I need the best I can get out of this trip as I am sure this will be the last. I personally just wish he would give me the shunt as I think its the only way I am going to get a hold of these high pressure headaches, I have dealt with them before I they never went away on there own until I literally busted out a new leak site, argh I dont know.

[LauraL840]

Love you girl! I know this is harder right now than what you had imagined (at least at this point in time), and I'm sorry you are not where you 'expected' to be. I trust him with my husbands' future and his life and that is not something easy for me to do ... it's A LOT easier to tell you that I trust him with your future and life! HA HA.

Seriously, all kidding aside, you are in the best place with the best surgeon to take you from 'leaking' to 'healed'. When you don't understand the 'why' involved, ASK! When you don't understand the answer, ask for an EXPLANATION! You know Dr. Schievink a lot better than I do (unfortunately you have more 'face' time with him), and I think you've come to realize that he's not a risk-taker and that he recognizes that it's not just your leak that's 'on the line' right now, it is your LIFE! It's your future, your children, your sanity (or lack thereof sometimes :D ), it's your ... everything. He doesn't take that lightly and so if that means he has to step back, re-evaluate or take his time, trust him to do that knowing he will do all he possibly can to give to you the very thing you want, your health!

TTYL

[Robbysmom5]

Oh Kim - this is so, so frustrating.
Are you still occasionally leaking from your nose?
Does Dr. S mention using one of those ICP pressure monitors that screw into your head somehow? I think another forum member suggested this a while back. We know you are feeling high pressure - I just would love it if there was some non-invasive way (screws into your head does not quite qualify as non-invasive to me) of monitoring your pressure to make sure it does not get too high.
Hang in there!!!!!

[sadlisa]

Kim,

I hope all gets better with a little time. Maybe that questionalble area was something and all will be well now. Is he going to do a beta 2 transferrin test? Please keep us updated when you feel up to it.

Thia

[Concerned Gal]

Jeanne - Link to old thread you mentioned for those interested
http://brain.hastypastry.net/forums/showthread.php?t=39676

[Concerned Gal]

Hang in there Kim. Hope the high pressure gets under control soon. That ICP monitor might not be such a bad idea at this point ???

FWIW i get that sensation too when I lean forward the way you describe. I try and avoid it (that movement) now at all costs.

[burk]

Great to hear from you! pray for you daily! Hope you get answers! best wishes to you and your family! This whole thing is soooo confusing to me and I am in the initial phases with the wizard, finally someone that knows about this, for that matter, so I cant imagine how you are feeling! Hang in there! This is a great site for encouragment, sounding board and a leaning post and I am greatful for it! Take care, you are in my thoughts and prayers and my familys too!

[Sally Girl]

The ICP monitoring is no big deal. A very short surgery so a bolt can be placed on top of your brain. Honest, it isn't that bad of surgery, compared to the others you have had. And taking it out of your skull is just some pulling and stitches.

I know some doctors feel it isn't very accurate. But what are the other options? Only two that I know of--an LP or guessing! And I don't like guessing at all.

I'm sad Anna can't have ICP monitoring (with her current ngs). It is assumed she has normal pressure on the basis of one LP. I think it would be a good idea to measure her pressure over time (ICP monitoring). But who listens to me? LOL.

I'm sorry things are so confusing and frustrating.

Cheryl

[forevan]

I am new to these boards so haven't yet had the chance to "talk" with you in person but I am following your situation with interest and with TONS of empathy and sympathy as I too am a mom leaking from the anesthesia from childbirth. I hope Dr. Schi can figure things out for you so that you can go home and feel like yourself again. I am so sorry you are struggling with this but know that many people, some of who you don't even know, are rooting for you! You deserve to feel like you did before all of this so keep pushing until you do! Take care and maybe when things have settled down for you we can chat. Hoping for better days!

Holly

[Tamaretta]

Kim and Chuck, Sending you alot of prayers - prayers for wisdom, prayers for peace, prayers for a steadfast spirit and most of all prayers that you be heard AND healed. I wholeheartedly agree that you should stay there until you are better! Thinking of you (and your family) often. Taylor wants to send you a card - would you PM me and give me your room # if you are comfortable doing so?

[dreb]

Wow Kim! Just want you to know you are in my thoughts! I hope that they will soon have some answers for you. I agree also, don't leave until things get sorted out and you are feeling a bit better! Hang in there & know that everyone here is rooting for you!! Be strong!

Deb

[wobbles]

Kim:
Is there a plan in place to look for a possible cranial leak? Personally, I think it would be informative to get your pressures over time and see just what your pressures are averaging. I cannot help but wonder if all your leaking and high pressure problems have so screwed up your body's perception of pressure that it overreacts even to near normal in pressure....remember when we were at Cedars together and you were having such horrible high pressure symptoms and then your CP pressure read at 9....we were all flumoxed at the time as we are now.....think more info is needed even if it means having a bolt in your skull for a time. Don't you like how I volunteer you for such a thing? Ask Dr S if something like this could help pin things down.

I totally understand your need to stay until you are fixed but realize that the HA may not totally resolve for several months even when you are fixed. Inflammation of the meninges takes time to resolve........unfortunately. Like Laura said...trust Dr S to do what is best for you....he is the expert and has your best interests in mind. He wants you to be well as badly as you want it....remember that. Have you told Dr S that you would just prefer to have a shunt and be done with it? That you have no confidence in your ability to control high pressure with meds?

keep pushing your hope button-
wobbles

ps....Melissa sends her love and said to tell you good job on getting your dura to finally heal! Well done!

[mindi]

Kim,

How are you feeling?

[dkdreamer1]

kim...and chuck,

I am so sorry that things are still so hard and uncertain. I. and I am sure everyone else are so greived by how hard, painful and frustrating things are for you both.

Chuck, my husband wanted me to tell you that he understands what you are going through. That at times you are (he is) saddened beyond words watching the one he loves going through so much pain and he feels helpless to change anything. He asks me how Kim is doing daily with trepidation, not wanting to hear a sad answer.

I know my initial post probably came across as odd. We, Scott and I, were so happy that Kim wasn't leaking and Dr. S liked what he saw in her dura. We stopped immediately and thanked God for the miracle of that news! I in no way wanted to disregard your pain, Kim. I believed then and still believe God intervened and began a good work in your body.

I am holding fast that HE who began a good work in you (your body), will be faithful to complete it! How HE completes it may not be in our timing or in the way we want, but we can trust in HIS faithfulness to us. Whether it is instant, over time or through the hands of man you can trust that He holds you in HIS hand. Kim, God is your DADDY in heaven and he sees your tears and weeps with you. We don't know why things happen and we seem to suffer. All we can do is cast our cares on HIM and trust that though we don't understand why. HE will show us how!

Thank you for walking this walk before many of us, and being an example of strength and courage for us all.

praying faithfully
Dawn