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steelpinstripe72
11-04-2009, 08:19 PM
OK, I'm not even sure where to start. Basically, I've been in constant pain for the past few months. It started in my abdomen and has since spread to my chest. I've been to seven doctors and not one of them has any idea. Tests have been run, have come back clean. I have CP, and therefore have a shunt. We went to my neurosurgeon because we thought the tube was caught on something. Turns out it's been disconnected for about a year. And I'm still here, which is a miracle in itself. Sidenote: the symptoms I'd be having if it were the shunt would be vomiting and headaches, neither of which I have. They actually told us that if nothing else was found, they would go in and take out the tube (but leave the valve). And it looks like that's what they're going to do. So I'm going in. Because I still feel like crap, and am getting more and more tired every day. I'm hanging in there, thanks in no small part to my friends who, even though they're still in Buffalo, 6 hours away, they're still in my corner. Prayers are much appreciated. Thanks guys :)

fansince'76
11-04-2009, 08:32 PM
My thoughts and prayers are with you and I hope you feel better after they take the tube out. God bless.

devilsdancefloor
11-04-2009, 08:44 PM
My prayers are on their way! take care let us know how things turn out!

SteelCityMom
11-04-2009, 08:48 PM
Thoughts are with you here. Glad to hear things aren't as bad as they could have been, but I hope everything goes good with the doctors and I hope you're feeling better soon.

BuckeyeSteel
11-04-2009, 09:18 PM
Done...

Galax Steeler
11-05-2009, 04:03 AM
Thoughts and prayers.

HometownGal
12-02-2009, 03:56 PM
You betcha you are in my prayers, buddy. You seem to have a very positive attitude and that will help you in your quest to feel well again, along with God's healing hands. Always remember - if He brings you to it, He will bring you through it. I am living proof of His healing powers!

Please let us know how you are doing when you feel up to it. :hug:

stlrtruck
12-03-2009, 07:37 AM
Prayers for you!

It's already a blessing from God that you've went almost a year without symptoms and the shunt was disconnected.

Anticipating a good report!!!

Be Blessed, Encouraged, and Spirit Filled!

Christian Snyder
12-03-2009, 07:46 AM
Prayers sent!

Shoes
12-03-2009, 08:12 AM
Will intercede at the throne of Grace.

steelpinstripe72
12-09-2009, 07:39 PM
Thanks guys...it's set for noon on Monday, and I had my last pre-op appointment today (I feel like I'm preparing for a trip to the moon). The doc said I'm a "lean mean muscle machine," lol. A lean mean muscle machine that's in a lot of pain, but anyway. What's keeping me going is my faith and a promise that I made to my best friend - that I'd be there to see him realize his dream, when that happens. Both of us know that neither of us can quit til we got nothing left.

Preacher
12-09-2009, 08:02 PM
Just read this now.... and am praying for you.

As others have said, let us know how things turn out.

steelpride12
12-17-2009, 10:10 PM
Hey you have a tremendous strong positive attitude and I love that! Keep strong and remember God is with you at all times and will help you through this all!

devilsdancefloor
12-17-2009, 10:24 PM
I will keep you in my prayers and thoughts

steelpinstripe72
01-22-2010, 10:50 PM
Thanks everybody...I've been meaning to get on here and give an update, and now that I've actually written out what went down, I'll re-post from my facebook. Short version: things didn't go as planned (but I'm okay now). Long version:

I had surgery on December 14th. Two days prior to this, they did an MRI, so that they could determine whether or not the valve in my brain was pumping. Now, the MRI...so not cool. When they do it of the head, they put this thing that looks like a stormtrooper helmet over your face. And then stuff you in a tube. I take one look at the helmet and am like, "Oh, no. NO WAY." All the while actually backing out of the room. Seriously. Luckily, they had an open MRI with the "helmet" looking more like a goalie mask. OK. Two thumbs up. We get the MRI done, we go home. Sunday. I go to church, then go home and start packing, because surgery is scheduled for 7:30 the next morning. A little while before my mom and I leave, the phone rings. Mum checks the caller ID and is like, "Sharon? I don't know a Sharon...oh...Sharon, PA...oh wait." Yeah, Mum, pick up the phone because you're closer...unless you want me to run you over. That call meant a lot...you know who you are, if you're reading this. Still want those 19,000 cookies? (LOL)

But the next morning, we had to be there at 6. The nurse who was putting in my IV told me first she couldn't find her glasses because some other nurse had them. Oooooooooook. This is not boding well. But she gets her glasses and gets the IV in on the first try. They do the surgery, and after removing the scar tissue we suspected was in there, had to reconnect the shunt. They had to do this, because my body had created another path for the fluid to get to where it was supposed to go. When they went in, this path was disrupted. So they put in a new tube and reconnected it. Finished, right? Wrong.

Guys, one has to remember that the valve in my brain was 25 years old. It had been unhooked for at least a year. Between how old it was and how much fluid had accumulated in my brain, the shunt could no longer handle what they were asking it to do. It was flowing too fast, so every time I tried to sit up, the headaches that I had would get worse, I would get sick (which was fun with nothing in my stomach and 5 holes in my core), and the room would just spin. I spent three days flat on my back, barely conscious, and let me tell you this: Because of the pain, which the painkillers did little to deter, I remember hardly any of it. It's like I have a jigsaw puzzle and have no idea what piece goes where, because I remember things, but if you ask me when these things happened...I couldn't tell you. I remember having a CT scan, x-rays...kicking a nurse out of my room, because she couldn't draw blood properly ("Hold your breath while I move the needle." "GET OUT!!!"). I love how she was like, "I'm not trying to torture you, I've been doing this for 20 years." Er...get out. Just get out. But did that happen Tuesday or Wednesday? Not a clue. The only thing I can tell you for certain is that I was sending my best friend his Scriptures at 3 AM, when the nurses would make their rounds. Those were my only real lucid moments, I think, when I would put those together and send them. If I woke you, champ, I'm sorry...just wanted to make sure you had them :)

They went in again, I think on Thursday. This time to replace the valve in my brain, which they replaced with a programmable valve that is set with a magnet. So I can't be near refrigerator doors, hold my cell phone to my right ear, among other things. But anyway. By Thursday night, Friday morning, I was able to sit up again. And eat. And I went home on Saturday. They did have to change the setting on the valve when I went for my post-op visit last week, but hopefully this is it. They do want me back in a month, but I want to say...and you guys know who you are...the prayers, encouragement, and friendship mean the world. God bless you all :) <3

Galax Steeler
01-23-2010, 05:39 AM
Hopefully things will get better for you now. It is good to hear you came through this all right and hopefull all of this is going to be behind you now.

HometownGal
01-23-2010, 06:09 AM
You've really been through a lot and you've handled it with such dignity! :drink: I've been known to throw a rude or incompetent nurse out of my room too - LOL! :chuckle:

I wish you well in your recovery and please know that we are all keeping those prayers going. :hug: Please continue to let us know how you are doing. :drink:

GBMelBlount
01-23-2010, 07:03 AM
Holly, it pains me to know you are suffering like this. I am so sorry.

You are in my thoughts and prayers friend and I will pray for another miracle and that you are given the wisdom and perseverence to find the doctor with the knowledge to identify the cause of your pain and help you.

I can now understand your natural affinity for our favorite Pink Floyd song "Learning to fly" :hug:

It is on my ipod and is one of my absolute favorite workout tunes! :thumbsup:

Don't give up Holly, I truly believe there IS a doctor who can can figure out the cause of this.

BigBen'sSwagger
01-23-2010, 08:15 AM
Just now read this and you certainly have gone through a lot. I hope the worst is over and that you quickly recover. I will say prayers for you.

I love Pink Floyd as well, but then again who doesn't??? Last year went to the laser light show down here in San Antonio with my oldest son it was a pretty cool experience.

lamberts-lost-tooth
01-23-2010, 08:57 AM
Holly,

You are remarkable.

With everything that you went through, I can still sense the humor and a good-natured attitude in your post.

May God continue to watch over you and shower you with the blessing of friends, and with a peace that comes in knowing Him and His plan in your life. May your recovery be one in which you are surrounded by those that love you, and your rest be one of those who know what it is like to be cradled in the loving arms of our Father.

-LLT