Monday, March 20, 2006

Did I ever tell you about the time I was diagnosed?

I began suffering from severe headaches at 13. The summer before 8th grade. My family doctor couldn't figure them out. My vision was fine. Better than 20/20. Neither Tylenol nor Advil relieved the pain. He referred me to a neurologist. He was an idiot. He did several exams and tests. He didn't believe my headaches were physiological, but psychological. He used me as a guinea pig. He prescribed so many pills I can't remember them all. My parents used to have a list. Wish they still did! He prescribed Haldol for me. Haldol! Of course at 13 I had no idea what that was, but now... after my nursing experience... I know the medication. I know what it is. I know who takes it. I know the side effects and reactions. Haldol! I only remember two things about that medicine before my parents demanded he take me off that drug.

I remember one evening my mom leaving the house. She told me she'd be right back. She had to meet someone because they couldn't find our house. I was by myself. No big deal. I'd been home alone millions of times. Okay. Fine. Apparently she was gone way too long. I got on my bike and rode over to my grandma's house (which was just a street over) and pounded on her door. I was frantic. Where was my mom? "Grandma, have you seen Mom? Is she here? She's not home yet." My grandma urged me to stay. But I refused. "I've got to find Mom. I can't find her." I rode my bike back home. Locked it up. Went inside. Laid back down. (So much for worrying about my mom!) Not knowing what just took place or that my mom was gone for only moments. Crazy!

The second thing I'm not sure I remember it happening. I can kinda place it, but it's kinda fuzzy. But my parents sure remember... I was getting ready for bed. I told my parents good night and turned to go to my bedroom. I turned right into the wall. BAM. Backed up. Laughed. Looked at my parents and did it again and again and again. My parents were terrified. But apparently I was one happy lark ;)

Needless to say the medicine was stopped. He did a spinal tap as a last resort type of deal. Voila! My opening pressure was three times the normal pressure. I remember him making the comment, "Well, it doesn't make any sense. She has no other symptoms besides the head aches." At the time I was diagnosed Pseudotumor Cerebri was pretty rare. Especially at 13 and physically fit. Most cases were diagnosed in women in their early to late 20's and 30's and significantly overweight. Most suffered from loss of vision and only mild headaches. I've never been "text book". I'm that way with several problems I face today. My system's just screwy. I've been told by two doctors that they still use me as a case study with their students and interns. Wish I could charge for that ;)

So... the worthless idiot referred me to a neurosurgeon. Another idiot! He refused to believe the spinal tap results and tried to convince my parents I was having psychological problems. He told them I was being sexually abused and my headaches were a symptom of the abuse. The entire time he kept giving my daddy the evil eye. My daddy is really my step-dad. But he's been more of a father to me than my real father. He's been my daddy since I was three years old. And he's never hurt me. And I never told the doctors that he had. They never asked me. They just assumed and that Daddy was the cause of my headaches.

The doctor reluctantly did another spinal tap telling my parents it was "a waste of time" because I didn't have symptoms of Pseudotumor. The doctor did the spinal tap. Surprise! My opening pressure was almost 500 mm H2O. Normal opening pressure is 50 - 180 mm H20! He was shocked and somewhat disappointed I'm sure. He didn't want to believe the results stating, "Lumbar Punctures aren't always accurate." (Which I now know is a lie!) He scheduled ANOTHER tap.

That tap was my second worse tap ever. (My worst tap was right after surgery to remove an infected LP shunt. The doctor had to do the tap right where my incision was. He tried once and failed. He left and came back to try and fail again... but made it on his third attempt. The other resident with him walked to the other side of the bed and grabbed my hand to comfort me as I was trying so hard to relax and not cry and flinch from the pain. Did you know that if you move the wrong way when the needle's in it can snap and well, that's all she wrote.) The doctor was very rude. (And I remember him being pretty darn yucky to his little red headed nurse.) He tried and failed and tried and failed and tried... He tried almost a dozen times (without numbing! I prefer taps without the numbing anyway, but I sure could have used it that day!) but couldn't get the needle in the spinal sack. I can still remember the pain I was in that day. My mom was in the room with me holding my hand. Her tears kept falling on my hand. My mom asked several times if he could stop. Finally the nurse convinced him. Kinda funny... a phlebotomist can't attempt to draw blood more than twice!

Our family friend (a surgeon) gave us a referral to a neurosurgeon at Cleveland Clinic. He believed me and the two spinal tap results! In October 1989 I had my first of many LP Shunts. I still giggle everytime I see a hospital id band. My surgeon was Arno Fried (pronounced freed). My band said "Kimberly ______ Fried". When I saw that after surgery I thought I had been fried. HA!

That my friends is how it all started. 17 years and 20+ surgeries, 30+ spinal taps, 8 ventricular taps, 5 bilateral greater occipital nerve steroid injections, 8 additional diseases/illnesses and hundreds of thousands of medical bills later... here I am. In pain every single day. Most days an 8 on a scale of 10 (ten being the worst pain)... Never below a 5. Thankful for every day that I have!

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Blogger Shelli said...

Oh, Kimmy! I cannot imagine the pain of that tap. I have assisted taps and you know, the good ones are so awesome at it and the bad ones just suck! I can't imagine how hard it must have been for your mom to watch it.

You know, you should have a meter for us on your sidebar. Then if you are having a bad day, you could put up an 8 or 9 or whatever and we would know that you are absent because you aren't feeling well and we could fill your inbox with lots of well wishes. I have seen lots of people with mood meters. There must be something you could do to let us know without having to do a post. Just an idea. We love you, you know that.

11:44 PM  
Blogger ...jus me said...

Kimmy, First I want to thank you for the comment on my blog "chubby toes"
But I want to tell yu that I too, have psuedotumor cerebri! I am overweight and was having vision problems with only one eye though. And lots of headaches, not migraines, but headaches! And my temples would swell. Finally thought I better find out why my eyes seemed to dim when I walked into my work area with all the flourescent lights. My doctor sent me to my eye doctor, and then (luckily) to a good nuerosurgeon. My LP had about the same results as yours. But I only had to have one. And he was very careful! I am so sorry you had to edure all that you did. I did not have to have a shunt. My doctor oput me on diamox 3x a day. It took a little over a year but it did the trick...I went into remission! I am checked once a year now or if I have any problems, and so far so good I have lost over 60 pounds since then and that helps alot! They were worried about my optical nerve repairing itself after all the pressure and extra fluid was trying to come out. The hemmoraging stopped when the diamox was able to slow down the production of extra cerebral fluid, and eliminate the excess fluid already built up. My eye has been good since. I really feel for all you went through, especially so young at the time. You must have been terrified! I am glad you stopped in, come by my other blog too if you'd like..."in my jammies". Look forward to talking with you! Tari

12:43 AM  
Blogger ...jus me said... I linked you to both my blogs! Hope you have a better day tomorrow! It sucks living with pain. I have other issues that keep me in constant pain, but that too is better now than it has been in years. You are in my prayers! Tari

1:15 AM  
Blogger Virenda said...

I can not fathom what it must be like and reading your post and your comments (which are ALWAYS funny and witty) I am pained that you have to live in pain. I think about it constantly and how unfair it is and how fortunate I am and how much I wish I could take your pain away. I know it's lame and probably over bored but you always bring tears to my eyes and I just feel so inadequate. You could probably live life better then I could, only your not able too and I feel so wasteful. I'm being honest here and I hope I don't come off crazy or emotional or whatever. (Don't I always though?) I don't pity you, NOT in that way. I just feel bad, I wish you had more because I feel like you deserve it and your upbeat personality and your ability to enjoy and poke fun, always amazes me and makes my heart just a little bit bigger.

I hope tonight is a "better" night and I hope the surgery your thinking about can relieve some of your pain.

1:29 AM  
Blogger Libragirl said...

I had spinal taps when I was a baby but luckily I don't remember them. My parents do but don't talk about it because I almost died. If that happened today, you could have sued the crap out of the neuros. And I thought my migraines were bad.

My mm is up and I have autolink.

5:21 AM  
Blogger monica said...

Wow that was a lot to read. Wow. You sweet girl. The sweet girl insideof you!

Kimmy I love your spirit. I love how I woulnd't know this about you if you hadn't shared.

I love how life doesn't seem to get you down. I know you have days, you must. But as a whole, you are filled with joy. The joy you choose.

Bless you friend!


6:23 AM  
Blogger FrogLegs said...

I hate how many idiot doctors are out there. I've never had a ST, I can't imagine how awful it would be... I hope your geta "5" soon, and that you suffer less and less 8, 9, and 10 type days. *HUGS*

8:44 AM  
Blogger Katherine said...

I'm so sorry you're in constant pain, I really can't imagine living like that - you're so brave! I would also have a lot of anger toward that idiot doctor! You should at least write him a letter telling him what an idiot he is.

8:55 AM  
Blogger mommyof4 said...

I am in pain everyday too but I don't think it is anywhere close to what you have to deal with! I always pray that it will be relieved someday, I pray the same for you.

9:44 AM  
Blogger Renee said...

I've grown a huge dislike of doctors from my own experiences and stories like yours. What makes these people so darned arrogant that if it doesn't fit what they know then it must be all in your head. Ever hear of opening a NEW book or looking it up on the web???
I had a mom call me because her doctor diagnosed her baby with a milk allergy and suggested she switch him from breastmilk to a hypoalerginic formula...made from Cow's MILK! WHAT THE ???

Oh my new DSL is awesome and your site does not slow me down anymore. YAY!

I've gotta go remember something now!

10:24 AM  
Blogger mar said...

OMG, I wish I knew what to say to you. But know I wish your constant pain diminishes from day to day, you've suffered enough- you are very , very brave.

10:47 AM  
Blogger Mama B said...

Wow, I never knew your story!! Thanks for sharing the details with us.

You have great spirit and you're a very strong person!!

11:46 AM  
Blogger Lazy Daisy said...

Wow, girlfriend, and yet you always stay so positive. You are my hero girl. I've got nothing to complain about and thanks for reminding me. Thanks for coming by today...always a plesure.

11:49 AM  
Blogger Lazy Daisy said...

Wow girlfriend, you are my hero. You never complain and you are constantly in pain. Please know you are in my prayers.

11:50 AM  
Blogger Rachelle said...

Hugs to you! I am so sorry you have to go through this!

12:49 PM  
Blogger Norma said...

What a story. You wonder how much pain and suffering could have been avoided at the beginning with a good diagnosis. I'm so sorry you've had to go through this.

Thanks for visiting my MM.

12:53 PM  
Anonymous Anonymous said...

That drug Haldol sounds really bad. OMG - I can't believe you had to go through all of that! I hope your head is feeling okay right now! ((()))

1:52 PM  
Blogger Maribeth said...

Spinal taps are no fun. Then again, niether are those awful headaches. Sorry you have had to go through all of that.
BTW, I love the name of your blog! Snickerdoodles are my favorite cookie in the entire world! To me, they are the ultimate comfort food!! Yum!

3:26 PM  
Blogger Emily said...

kim --
thanks for sharing this; i feel lucky that i haven't had such awful experiences w/doctors (yet,knock on wood) -- it just makes me FUME!!! i am constantly in awe of your strength and cheerful attitude. you're an inspiration.

4:10 PM  
Anonymous Brigitte said...

Hey girl..thanks for visiting my site..I like yours also. I'm sorry about your headaches..I have frequent headaches also & I know how hard it is to live a normal life in pain all the time..I will pray for you!

4:20 PM  
Blogger jessica said...

i wanted to post a comment for two reasons... first of all, you spoke of the cleveland clinic. not only did this hospital save the life of my brother, but also of a friend and finally gave me my ankle back, reconstructed. as a NE ohio native, i've always felt so proud of the Cleve Clinic.

Also, I spoke of my brother being treated at the CLinic. He's also had several shunts as a result of hydrocephalus. Different than your condition, however, still affecting spinal fluid and it's route in the body.

I wish you great health and just wanted to stop by. I surfed here through Blog mad and your design (it's adorable, by the way) caught my attention...

4:26 PM  
Blogger Rowan said...

How awful. It's amazing how quickly docs want to jump on the psychosomatic bandwagon. Yikes.
I know how your mom felt standing there with you. I've gone through hundreds of blood draws with Kajsa. It never gets easier.
I wish that there was a way to help with your pain.

5:02 PM  
Blogger Stacie said...

I so felt your pain on that tap...a similar experience for me. Not fun! Thanks for the links...I am going to check them out. Stacie

5:23 PM  
Blogger AlphaGamBran said...

Whew...long one sister! I didn't even remember some of that which probably means I never knew! Argh! Love you! Hug Jacob Wacob for me.

5:30 PM  
Blogger Undercover Angel said...

You've been very brave in the face of pain. I can't imagine what you've gone through with all of those doctors and with the waiting - the waiting must have been hard. I hope someday your pain goes away.

5:43 PM  
Blogger Suz said...

((((Kimmy))))) Thankyou so much for sharing your painful story. I cant even imagine what you have gone through. You seem like such a kind, warm, loving person and its so unfair for you to have to go through so much pain.

My heart goes out to you, ever since you first started posting about your illness, you have been in my Prayers.

Hugs Suz

7:26 PM  
Blogger Lynda said...

Kimmy - I am so sorry you have to go through pain. At least it isn't a 10!

My husband had a few bad epidurals. I can't imagine what you had to go through. It is always nice when you find a good doctor though.

8:45 PM  
Blogger Lynda said...

Oh, and my MM is up and I linked it in the auto linky! I am one of the cool kids! I have it now!

8:46 PM  
Blogger Carmen said...

Doctors, in general, suck. It took them years to diagnose me with all my stuff. Ugh. I'm sorry you went through all that. Hopefully, you can find things each day that make you smile. :)

8:57 PM  
Blogger Marv said...

gosh...i couldn't imagine having to go through all that!! stupid moron doctors!!!!! where r their brains????? got fried throughout medical school i guess!!!
Be strong my friend! my prayers are always with you!!!!

11:07 PM  
Blogger OldOldLady Of The Hills said...

This is a horrendous medical Horror story. I really do not like doictors and find so very many of them inept, inacurate, incapable of doing their jobs, and uncaring to the max!
I don't know how you survived the Haldol stuff as well as that doctor, and the other one...HELP!
Yoiu must find it very helpful to be a nurse but at the same time I bet you see a lot of Medical Mistakes....I'm so very sorry you are in this kind of pain all the time..You are a very brave person Kimberly...

1:48 AM  
Blogger Crazy and lovin' it said...

That is such a story! I mean memory!! The wall thing freaked me out thinking about my own daughter. I would have flipped.

This is also my first trip to your bloggy love the design.

12:47 AM  
Blogger Sandy said...

OH wow. I can not even begin to imagine the sort of pain, nor what it'd do to one's physche.

Wishing you the best.

Thanks for stopping by earlier today.

7:41 AM  

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