Tuesday, October 31, 2006

The Latest (UPDATE below)

I had an appointment with my neurosurgeon today. Finally. I've had two appointments that I've had to cancel because I was too ill to go. I knew I couldn't cancel this one.

My Pseudotumor Cerebri and Arnold Chiari symptoms are getting way too bad. Not only has the pain and swelling increased, but I've also been suffering from severe... sometimes paralyzing back pain.

The pressure behind my eyes (and entire face) is worse and my vision is getting really bad. Things used to be blurry and fuzzy, but now there's a "film" over my eyes that prevents me from seeing.

I've been having breathing problems and wake up several times a night not able to breathe. Finally I realized it was positional. Apparently I'm arching my back/neck due to the pain and my head goes all the way back touching my back which causes my trachea to close... which results in my inability to breathe. Duh. (But the one thing I am actually pleased about... I CAN BEND MY NECK BACK ALL THE WAY BACK! I haven't been able to do that for years. Of course, I can't do that while I'm awake, buy Yay! It's possible ;)

I've had problems walking. My dear friend, Melinda, gave me a rolling walker (the kind with the seat). I'll say Jacob gets more use out of it than I do. Could be because he's using it when I need it!

I'm still swollen all over. My nose is just as big as it was when I was pregnant. (Speaking of which... Jacob's turning 11 in just a few days!!!!) I'm taking a very low dose of Bumex. The dose really needs to be adjusted, but what do I know? I'm no doctor. I've only lived with this disease for almost 18 years... why would I know my body and it's symptoms better than a doctor? Yes! I'm bitter today.

I'm going to have to have another VP shunt operation. I'm not sure if he's going to replace it or revise it. Either way it's brain surgery. Either way it's going to last for hours. Either way I'm going to wake up from the operation vomiting severely for the next 18 plus hours. Oh, I'm not looking forward to that. Vomiting with an incision in my head, neck and stomach... not fun.

But neither is going blind from the increased intracranial pressure. Once the vision goes from blurry and fuzzy and "filmy" to black... there's no going back. It's irreversible. And I can't be blind. Not on top of all I'm going through right now. I can't bear a lot of things going on in my life right now, but I know I couldn't go on without seeing my precious baby Jacob's face everyday. He's my light. And I thank God for giving him to me.

My surgery is scheduled for next Thursday, November 9. Arrival time is 7:30 a.m. and surgery time is 9:30 a.m. Now I'm off to ask a friend to shave my head. Darn it! I just got it to grow back. It's finally past my shoulders for the first time in years. Oh well. I did need a cut. At least I found out BEFORE I paid the big bucks for that ;)

Thanks for your support and prayers. You all have been wonderful friends!

Love and hugs...


Blogger Libragirl said...

Oh Kimmy, I wish there was somthing I could do to help you.

On the cute side, Last night on Veronica Mars, they showed a list of emails she received and their was emails from someone named Snickerdoodles. I took it as a shout out to you.

5:53 AM  
Anonymous Drib said...

Ah Kimmy...I'm glad you came to give us an update. I check in on you a lot.

Just know that we are thinking about you girl....

12:59 PM  
Blogger Emily said...

you are in my prayers. i can tell you feel discouraged (and why not?) but keep your chin up, and know that you have many friends who care for you.

3:56 PM  
Blogger It's a FLIP-FLOP World said...

KImmy: I always look for you to pop up on my bloglines and then check on you all of the time. Thanks so much for your update!! I just wish that this was better news. I wish that I could help you out physically but I will be praying for you...I can understand about losing your sight. I would not want that of anything.
On a lighter note. I am at Lazy Daisy's house right now in Va. We are going to get together with 4 other bloggers this Friday. We should have a great time. Take care. I will be praying for you. sandy

10:38 PM  
Blogger Kim said...

thanks for the update...sorry things are so rough for you...just know that there are many people out here praying for you.

take care.

1:39 PM  
Blogger sleeplessinoklahoma said...

Blessings to you dear girl. Prayers are being sent up for you. Take care.

Blessed be...

3:37 PM  
Blogger ...jus me said...

Oh Kimmy...I am so sorry you are having to go through all this again! My aches and pains seem so insignificant compared to yours. I am praying that this surgery will help give you some comfort and improve your vision. Also that the recovery is easier than you are used to. My heart goes out to you Kimmy. I wish there was something I could do, but then I remember that the most powerful thing anyone can do is pray. So that is what I will be doing Kimmy.
Blessings, Tari

5:04 PM  
Anonymous Kristi said...

You sure have had a lot of surgeries! You NEED to go to the Chiari Institute. PLEASE! They will FIX you!


I am a patient there, feel free to e-mail me! I encourage you to!


10:11 AM  
Blogger FrogLegs said...

OMG! Today, and I couldn't send you well wished... but I am now. *HUGS* and much love--

6:27 PM  
Blogger MysteriousLady said...

Hope surgery went well for you! And you are on the road to recovery! {{hugs}}

4:53 PM  

Post a Comment

<< Home