Monday, March 27, 2006

Did I ever tell you about my symptoms?

(Continued from last week)

Symptoms due to Pseudotumor Cerebri for me are similar to a brain tumor:

*Blurred vision/vision changes... I am very lucky to still have 20/20 vision. I did have better than 20/20 and feel like my vision is worse than it is. (Most with this disease have problems only with their eyes- decreased vision leading to blindness and "slight headaches".) I have my vision checked yearly and thorough testing done twice a year.



*Gait problems

*Memory loss


*Difficulty finishing sentences/thoughts

*Difficulty finding words


*Swelling and pain/stiffness in my extremities

I like to blame my weight gain and everything else on this problem as well... why not? It's to blame for every thing else! Brain problems! ;)

*Pressure in my head. (Due to the increased CSF). It's like a water bottle that's already full, but water continues to pour in... the bottle's closed so no fluid can escape and the sides are already expanded as far as they can go.

*CSF leaks from my ears.

*"Woosh" sound in my ears. The sound of CSF in my head.

*Extreme pressure behind my eyes. It feels like if I could only pull my eyeballs out that would help so much. I do "stretch" my eyes. I look from side to side forcing my eyes to move as far as they can to attempt to relieve the pain. I've been doing this since 13. People who don't know me think I'm either weird or rude. (This doesn't happen everyday. Just when the pain's too intense... maybe every other day :p)

*Headaches. Severe and at times debilitating headaches. (Also due to TMJ, Arnold Chiari Malformation and Greater Occipital Neuralgia)

*Neck pain. (Also due to Arnold Chiari Malformation and Greater Occipital Neuralgia. The pain is so intense at times I cannot turn my head. I become so tense my shoulders draw up to my ears, and I hunch over to sort of cradle my head and neck. I have to use my entire body to turn my head. But since the shots in the Greater Occipital Nerve I've noticed a huge difference and am able to keep my shoulders down and relaxed more!)

*Shoulder and back pain Part of this pain is due to the reaction of my head/neck pain... and from doing nothing but sitting 24/7 for the past 4+ years.
Part of the back pain is due to pieces of an old LP shunt that disintegrated and broke apart when the surgeon tried to remove it and continues to "float" in my spinal column.

More next week. What fun! ;)

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Blogger Pink Chihuahua Princess said...

Kimmy--My heart goes out to you. But, I just keep thinking how lucky we all are to have every day to enjoy. Let's hope today is a "5" for you! I enjoy your blog so much and it makes me sad that you are facing this problem because you seem so sweet!

12:38 PM  
Blogger AlphaGamBran said...

Love you mucho!

12:46 PM  
Blogger Lazy Daisy said...

My poor poor Kimmy. I am so sorry...Kimmy I promise I will start praying for you everyday. Blessing and peace my friend. My MM is up too.

1:01 PM  
Blogger monica said...

Wow. That's so much to happen all at once to one person. I'm so sorry!!!!

I'm glad you shared your heart with us.


1:12 PM  
Blogger Mindless Dribbler said...

Damn....I don't need to go to medical school now. That's a lot of stuff Kimmy and it sounds as if you've been battling it for a long time.

Happy thoughts your way. Keep your chin up. Probably tired of hearing it but...well, you know.

1:56 PM  
Blogger Chana said...

Acceptance, Attitude, Courage, Habits, Happiness, Persistence, Perspective,Love are some of what it takes to make it when life throws a curb ball at you. And you are doing. You are the hero. Hugs from someone who wishes you the best.

2:28 PM  
Blogger Shelli said...

You are amazing! An inspiration. I hope you feel better. Take care.

3:38 PM  
Blogger Raven said...

I wish there was a way to take away your pain. :( Take care Love.

4:00 PM  
Blogger shirley said...

Eek! I'm sorry to hear about all your symptoms, but you certainly handle it with grace, dignity, and a healthy dose of humor! Sending you all the best!!

4:11 PM  
Blogger Lynda said...

If I ever see someone rolling their eyes in their head, I will say "Hi, Kimmy!"

Seriously, I am sorry you have to go through all this. At least you seem very positive!

4:30 PM  
Blogger YellowRose said...

When I say I understand what you are saying, I mean it 100%! See I was diagnosed with PTC back about 15 years ago. Fortunately for me I seem to have gotten it all under control after years of finding the right treatment and alot of prayer! I'll be praying for you friend!

My MM is up!

4:51 PM  
Blogger FrogLegs said...

Good grief-- I forgot to click enter, and my commentis now lost. So... second comments are never as good. *hugs* and much cyber love to ya.

6:55 PM  
Blogger Libragirl said...

I will never complain about my headaches again. Ok, I will but I won't be as whiney. I don't feel your pain but I wish you get better soon.


My mm is up. It should make you laugh. I hope...that's what I was going for

7:12 PM  
Blogger Virenda said...

Well you just made my problems look VERY small.

Those symptoms sound horrific to have and I can't believe you find the energy to smile and laugh. I love that about you.

I hope things will somehow get better.

12:32 AM  
Blogger Lala's world said...

oh wow!! that is a lot to live with! is there no cure for this?

1:02 AM  
Blogger OldOldLady Of The Hills said...

You live with am awful lot of bad symptoms, my dear! I sure hope they can find something to help some of those things.

Here from Michele's Alphabet Game this early A.M.

3:17 AM  
Blogger Gigglin' And Screamin' said...

Wow you must be strong to bear that and still be able to do all you do. I hope all of us bloggers can add to that strength for you! Lot's of love and support to ya!

12:41 PM  
Blogger Heather said...

Wow, that's a lot to deal with. Big cyber hugs.

BTW, thanks for visiting my blog last week. I have no idea what "emo pants" are. If you figure it out, I'd sure love to know.

I do have a list of my favorite punk/emo music up if you're interested, though.

Keep up the fight. What an amazing woman you are.

1:52 PM  
Blogger LadyBugCrossing said...

That's one heck of a list of symptoms, honey!! OMG - you are one tough cookie!!

3:32 PM  
Blogger Marv said...

that's too much for me!!! I don't feel sorry for you, in fact, I admire you for being so strong!!!! You are in my prayer!!

5:08 PM  
Blogger Heather Smith said...

you're in my prayers as well. I had decompression surgery last year for my chiari malformation. my dad is undergoing surgery this Friday for it. So we definitely feel your pain on that part. Dad also has the fluid buildup.
Anyway, you're in my prayers, and if you'd lift up one for my dad Friday, I'd appreciate it!

7:32 PM  
Anonymous Anonymous said...

Sending hugs to you!!! ((()))

4:27 PM  
Blogger Admirablereserve-lSt said...

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4:13 AM  

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