Tuesday, April 04, 2006

A Late Monday Memory

Did I ever tell you about my surgeries?
I'm only counting the major operations. Not the surgeries to remove cysts or my gallbladder.
Or my c-section (general anesthesia... not the local "luxury"), etc.

(Continued from here and here.)

LP shunts x 9
**Due to Pseudotumor Cerebri
Diagnosed fall 1989. (More info here)

The first set of shunts were placed (and revised) every 6 months from October 1989-1991. The shunts failed due to scar tissue or other foreign material clogging the tubing so they had to be re-placed or revised.

The second set of shunts were placed (and revised) from May to November 1999.

I have pieces of tubing still floating in my CSF because the shunt from 1990 disintegrated. When the surgeon (another one I fired, but not because of this) tried to remove the tubing it broke apart and shot up my spinal column. She wasn't able to get all of it out. I blame that on my brain farts ;)

The surgeon... the same from above (This is one of the reasons I fired her.) drained the excess CSF fluid to within normal limits. How nice. Right? No! She drained the fluid and then put in a functioning shunt. The shunts job is to drain excess fluid. So... the shunt did it's job. After surgery I couldn't move. The CSF fluid was completely drained. I felt like someone was vacuuming my brain right out of my head. The pain is indescribable.

The surgeon ordered me to get up and walk 30 minutes every hour. I had to have one person on each side of me just to stand up. My body kept curling up into the fetal position. And I had no control.

Once home my family friend (and doctor) ordered COMPLETE bed rest. No getting out of bed. No walking. No sitting up. No using a pillow. FLAT as a board. For two weeks. I was receiving IV fluids at home and had to take salt tablets every few hours to get my body to make more CSF. The good thing... I was encouraged to eat a lot of KFC's mashed potatoes and gravy. Like I told you before. Liquid sodium. My favorite ;)

Jaw Surgery
**Due to Temporo-Mandibular Joint Disorder (TMJ)
After still having headaches with a functioning LP Shunt... I was diagnosed with TMJ. I thought everyone suffered from ear and jaw pain, cracking and popping and lock jaw. I was diagnosed in 1991. Imagine my surprise when I found out there was another reason for the headaches... and the problem could be solved!

I went through a splint, braces, occupational therapy and speech therapy (to re-learn how to swallow and hold my tongue while at rest). Didn't work. But I did learn how all y'all swallow ;)

The surgery was December 1993. My senior year of high school. Just days before Christmas. Yeah. This is what I used to eat my Christmas dinner.

The surgeon dislocated my jaws, added pins and screws and other metals, attached cow bone to the top front since I had an open bite. He also had to cut a large "V" shape out of my tongue to make it smaller. My tongue's to blame for the open bite. So. My jaws were wired shut and my tongue was swollen 4 times its size. I went to pediatric ICU after this surgery. I vomited violently for hours. I remember lying flat on my back and vomiting. With my mouth wired shut. The nurses were assisting a patient next to me. They kept telling me to hold on. I couldn't roll over, and I started choking. I kicked the bed and hit the siderails until a nurse came over. Finally, she decided she'd get a lot more work done that evening if she just left the suction catheter!

Months later I noticed the surgery worked. A functioning shunt and jaw surgery. Talk about one happy heifer. Get it. Cow bone. Okay. So I have brain problems ;) But then... in 1998 I was at work. A 70 pound 80 year old man with Alzheimers punched me in my right jaw. Yeah. 70 pounds. He cracked my right jaw. I now have arthritis in both jaws. The surgery... the pain and suffering... the thousands of dollars in medical bills... the months on a liquid diet... the symptom free years... All washed away with one punch. By a 70 pound 80 year old. But let's keep that part between you and me!

Tarsal Tunnel Surgery

**Due to Tarsal Tunnel Syndrome and Peripheral Neuropathy
We believe my Tarsal Tunnel and Peripheral Neuropathy is due to my Pseudotumor Cerebri. The pressure on that part of the brain and/or nerves.

January 1999 I started having severe pain in my right foot. Just a few days later I couldn't walk and my entire leg was on fire. Finally after three months the doctor operated on my right foot. One month later I returned to work after being off since January. One week later I handed a patient some pain medicine (ironically) for her neck. One minute later I was in excruciating pain. I fell over and grabbed my head and neck. A friend and co-worker ran over to take my blood pressure. 252/200. They rushed me to the emergency room. One week later I had the first of the second wave of LP Shunts.

(programmable) VP shunt x 6
from January 2001- June 2002

**Due to Pseudotumor Cerebri

Years of LP shunts "sucking" and draining CSF fluid resulted in my brain stem being pulled down further and further into my spinal column. Eventually the brain stem completely blocked my spinal column, but the LP shunts were still suck, suck, sucking away. This is how I developed Arnold Chiari. The brain stem was like a plug in the bathtub, but a force continued to pull at the plug attempting to drain the water. Yeah. Ouch.

Because of the Arnold Chiari my new surgeon needed to place the shunt in my ventricles. (My most trusted brain surgeon.
Dr. Luciano at Cleveland Clinic. The one and only to operate on my brain.)

Another problem. I told you I wasn't easy! Years of high CSF pressure had almost completely flattened my ventricles. The ventricles were (are) so small he couldn't perform the surgery by hand and had to depend on the use of a computer. I considered that a blessing. Can't beat the best brain surgeon AND a computer ;)

None of these operations lasted less than 6 hours. The surgery. Not prep time and recovery. Six hours from the time he started to the time he stopped. In a "normal" Pseudotumor cerebri patient with "normal" ventricles the procedure would have lasted an hour and 15 minutes. From the time the patient was wheeled in to the time the patient was wheeled out. Yeah.

My second VP (placed five months later) became infected. I had a PICC line inserted, and I started a 31 day antibiotic regimen of Vancomycin. (And with that I suffered from "red man syndrome". My arms, face and chest turned red and hot followed by rash and itching. This occurred every time I administered the medicine. The medicine also burned the vein and caused pain to my arm. I couldn't wait to have it removed.
I was with my grandma the day the nurse called and told me the PICC could be removed. It bothered me so bad I showed my grandma what to do and what to expect. I remember her shaking and stopping every so often to pray. I mean. She was pulling 24" of tubing out of the vein in her granddaughters arm. Bless her heart!

The picture above is how the vp shunt is programmed. The difference... mine is located the top right of my head instead of behind my ear.
Learn more about the programmable shunt here and here... if you have nothing better to do ;)

Chiari Decompression
**Due to Arnold Chiari Malformation

September 2002. My last operation.
The surgery lasted more than 8 hours. Dr. Luciano said it was worse than the MRI and CT scans showed. And also the worse case he had ever seen. He had to shave more than usual off the base of my skull and had to remove 2 vertebrae. I remember him checking on me three times in the recovery room. HE checked. THREE times. Talk about being scared. Never once after the previous six operations had he ever checked on me in the recovery room. EVER. So when I woke up to him at the foot of my bed in recovery talking to the nurse and his resident... I freaked out. You can imagine the fear after seeing him for the third time!

The decompression was the worst surgery I had. I couldn't open my mouth to talk. I couldn't even feed myself. Jacob fed me. He was 6 years old at the time. I took him out of school to be with my parents. I was in a hospital 6.5 hours away from home. I wanted him to be with my parents if anything was to happen. I was very nervous about the operation. I had a feeling I wasn't going to make it. The weirdest feeling and strongest feeling I've ever had.

It was pretty bad. The pain and severe muscle spasms lasted for months. I couldn't move my neck. I had to use my body to turn. I had to hold onto my head if I was in the car. Any little bump caused horrific pain. I couldn't even stand for air to blow on my neck. I wore a scarf well into the summer. People must have thought I was crazy the way they looked at me with my scarf around my neck and shorts on.

Almost a year later the pain and spasms let up. I was able to move my neck a little, but to this day I can't move it very far. I still have to hold onto my head when I'm in a car. And when I have to cough or sneeze. It's over!

To our surprise the decompression didn't help. More LP and VP shunts are out of the question... and pretty pointless. The last time I saw Dr. Luciano he told me he had one more operation (Did that make you jump? That's how I felt when he told me.) we could consider. He would remove a large part of the skull. I immediately said no. He pretty much agreed and said, "I'm a surgeon. That's my answer to everything." I still appreciate his honesty.

**Not only were my operations major... so were the recoveries. I vomited after every.single.operation. Violently. For hours. Sometimes days. Yeah. I thought vomiting through a mouth wired shut was bad. Nope. Didn't even compare to vomiting with incisions to my head, neck, abdomen, side and back.

By God's goodness and grace I am still here. I am here to witness to others and testify to His goodness. And I'm able to hug and kiss my Jacob every day.

[Forgive the errors. I'm not feeling well and this took a lot out of me. I know it was lengthy, but I hope you learned a thing or 50 about me ;)]

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~~~~~ ~~~~~ ~~~~~ ~~~~~ ~~~~~ ~~~~~ ~~~~~ ~~~~~ ~~~~~

Today I am infecting Paisley with The Indie Virus and Libra Girl with The Indie Virus and Virenda with The Indie Virus. They all get a piece of my Indie Virus.

The Indie Virus is a social experiment Personified started. Infect lesser known blogs (those not in Technorati's top 100) with The Indie Virus and let's see how far the infection can spread.


Blogger Chana said...

Well for one i learn what a determined and strong person you are to have been able to go through all you have had to. I'm so glad you are a fighter and have the spirit of a million people. I'm humble in your courage and send you many, many hugs. I'm sorry you are not feeling well; Please rest and know i'm sending you lots of get-well wishes. Many hugs.

3:10 AM  
Blogger Libragirl said...

Oh my god. I had no idea what you had been through. I have a sign by my desk, I am a strong and independent woman. I think that is you. Hope you feel better and I am sending you hugs and well wishes also.

4:45 AM  
Blogger LadyBugCrossing said...

Oh my, Kimmy!!! You have had such a tough go of it. You are strong! You survived and are making it!!
You GO girl!

7:36 AM  
Blogger Norma said...

This is an incredible story, Kimmy, but what is remarkable is your faith and positive attitude. I think that, and not doctors, have pulled you through.

9:03 AM  
Blogger Katherine said...

Wow, I'm speechless after reading all that. How awful for you. You sound like you have such a good attitude, too - amazing! Keep taking it day by day.

9:17 AM  
Anonymous Anonymous said...

I can't believe you still have such a great attitude in general!


I'm praying for you.

9:24 AM  
Blogger Carmen said...

I, for one, am glad you're still here. :) I had one surgery and it was awful and I was a big baby about it. See, always be happy, cuz someone else has it worse.

9:31 AM  
Blogger Marv said...

you are such a fighter!! that is incredible...what you have to go through!! geez!!!!

10:03 AM  
Blogger Reverberate58 said...

This is definately TMI! How do you get up each day! And I whine about my wrist and caprel tunnel! You go girl!!

10:47 AM  
Anonymous Ardice said...

wow Kimmy! I've learned a lot from this post not only the medical things but what kind of person you are. With all you've endured you have such a powerful inner strength.

I hope you're feeling better today. Take Care...

10:58 AM  
Blogger Lynda said...

Some of those procedures sounded similar to what my sister had. Especially the jaw surgury.

I am sorry you have had to go through so much, but I am glad you are here.

11:02 AM  
Blogger Suz said...

Wow I cant believe all you have been through. You come across as such a strong person with a great attitude who is a fighter.

I keep you in my Prayers that each day is a good one for you.

Hugs Suz

12:03 PM  
Blogger Pink Chihuahua Princess said...

You are such an amazing individual. You have such a wonderful attitude to have been through so much and have so much pain. You are an inspiration to Snickers and myself. Tell little Snickerdoodles that the chihuahuas say hi. :)

12:05 PM  
Blogger ...jus me said...

Kimmy...You humble me! As you know, I have PTC, but not anything like you, and several other various ailments and syndromes, but still nothing like you! You are on my prayer list, and I don't care what the reports out now say...Prayer Works!
Thank you for all we have learned from you, not only medically, but, more importantly about the spirit inside you! Bless you!

1:56 PM  
Blogger Emily said...

oh kimmy. what an amazing journey you've had. i have to agree that without it being God's will, you wouldn't still be here. your strength and positive attitude are humbling.


3:05 PM  
Blogger Rachelle said...

Wow! you have had a ton of surgeries! I'm so sorry!

4:01 PM  
Blogger Heather Smith said...

I hate the decompression surgery didn't work for you. Dad had it last Friday. Seems to have done the trick thusfar. He has a much better pain tolerance than I do, but God definitely had his hand on that surgeon. Praying that He'll give you some relief!

5:20 PM  
Blogger Renee said...

Oh my that's a lot to go through! It seems that one thing caused another.
I have TMJ too...but not bad enough for the military to cut me open for it. I've also read that some people were bruxing their new joints apart and the broken parts were tearing up their muscles...yikes. I'm assuming they've since changed the procedure.

Thanks for stopping by.

6:31 PM  
Blogger Lazy Daisy said...

Whoa girlfriend, I started reading this post this morning and was so tearful and upset at all you have been through that I couldn't get through it. I just finished reading ....and I'm convinced that you are an amazing young woman. Your are always so positive and cheerful. You are definitely an inspiration to us all.

7:05 PM  
Blogger monica said...

I agree with the bug, you are so strong. I am so proud of you. Thank you so much for sharing this story.


9:00 PM  
Blogger Virenda said...

I am going to go see what the Indie Virus is but I needed to comment first. I can not believe the amount of pain and hurtful pointless surgeries you had to endure and that you are still one of the best people I have met. I have no words to express what I'm feeling because most of it, is just SHOCK. Shock that you went through this all and that there really are such terrible inept doctors. I love that you still manage to make me laugh and enjoy the small things. You bring me joy. ~wink~

Now I'm going to go read what it is...

10:47 PM  
Blogger Lena said...

Good God woman! This is horrifying! And I thought I regaled people with my C-section tale!

Amazing bravery and determination. And frustration. Just...amazing.

11:53 PM  
Blogger Viamarie said...

You must be a very brave person to be able to endure all these major surgeries. God has definitely been so good to you.

Dropping by via Friday's Child.


8:21 AM  
Blogger Mindless Dribbler said...

Good gracious girl, you've been through so dang much.

You know, that's pretty inspiring Kimmy...

8:56 AM  
Blogger FrogLegs said...

My head is literally spinning. Wow. I love you included visuals-- I love visuals, makes it easier (okay, not really, but a little) to figure out.

10:02 AM  
Blogger Teressa said...

I came here through the Chubby Toes blog. It was uplifting to read all you have been through and that you still hold strong to your faith and how great God is. Just keep looking to Him to see you through. God bless.

2:04 AM  
Blogger valphish said...

Kimmy, Hi honey! I actually found you doing a chiari blog search. I, too, have PTC and chiari. I have a v/a shunt and have had decompression surgery for a 22mm herniation. I have had alot of surgeries, too =). Perhaps we can email and share some tales. I know we have alot. It is hard to find others like us. I have belonged to some PTC boards and chiari boards, but it is hard to find those of us affected by BOTH problems. I have a blog online as well if you would like to come visit. It is on aol. I am also on disability, of course. Stay strong! Hugs, Val

10:35 AM  

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