Thursday, June 26, 2008

Flashback to Friday the 13th - Surgery Day

I had to be at the hospital at 6am. Checking in took mere minutes and then I was sent back to be prepped. The anesthesiologist was a kind sweet caring man that I can not say enough about. He came in to talk to me after I changed into my lovely gown wear. I have special needs and we addressed them in a very dignified manner which I greatly appreciated. He spent whatever time I needed to explain and feel comfortable, very refreshing. Then I was given Versed (my request) and the next thing I remember is waking up in the PACU asking for a bed pan so I could pee. This is not the normal protacol. Usually they leave the catheter in until the next morning. Again, this was my request before we got the party started and I do contribute my ability to leave less than 24 hours later partly to the fact that I had to get up and use the facilities. The more you move, the sooner you feel better. So true.

Anyway, I was given Fentynal and Morphine in the PACU by the lovely and beautiful nurse Jill . (Wanna make sure I also shout out to Wendy who was my pre-op nurse and a lovely lady as well.) I had a wonderful time in the PACU for the couple hours or so I was there. I was doing so well, I got to skip Step Down which apparently is where patients head until they are doing well enough to go to a regular room.

So, I was off to my new room. Here is where it gets sticky. I was completely ignored by my new nurse, I think her name was Linda. This other nurse, who was only supposed to be there to do paper work or something, came into our room (all rooms are semi-private which means roomate :) ) I begged her to find my nurse because I wanted my pain meds. Then my roommate grabbed her for something else. Long story short, she ended up taking care of us and a few other people because our nurse couldn't bother to show up. My roommate's I.V. kept going off irritating the crap out of me. I started punching the nurse help button for someone to come in and shut it up. I got so angry that I demanded to speak with my so-called-nurse's supervisor who was very nice (of course she was, I was a disgruntled customer) and handled it all with professionalism and compassion. I got a new nurse and she was OK. Apparently, you have to ask for your drugs when you want them or you won't get them. I thought that was incredibly dumb because, as far as I know from a decade of chronic agony, the smart thing to do is stay on top of the pain. As most of you know, if the pain takes over it is hard to recover. So that is a word to the wise, ask for drugs!! The next morning brought breakfast which wasn't bad and hubby brought Starbucks and I was feeling good. A doc-not-my-own came in and saw me and I convinsed him to spring me. Wasn't really happy that I didn't get to see my doc. I wanted to talk to him about some things and this guy (a resident I think) said he had been there up until Dr. Di brought out the drill, which is pretty much the beginning, so of no use to me. Bummer. I put some makeup on, brushed my teeth, combed my hair and left at 11am on Saturday.

Hubby and I decided we wanted food before the 3.5 hr ride home so we stopped at a Buffalo Wild Wings and got some chow for the road. The ride home was uneventful. I called Sue, a friend that I met on the WACMA site who was having her surgery that following Tuesday with Dr. Di, to tell her how easy it was and to definitely not be scared. It was a breeze and I was going to sleep in my own bed the day after brain surgery. You can't beat that. I spent the rest of the trip trying to keep my husband awake because he hadn't had much sleep the night before. The kids were at camp and Grandma's, so we were lucky to have the time alone. The kids didn't come back until the following Thursday night so I had a lot of time to heal.

To sum it up, every thing went fabulously at first (during the critical parts) and everyone involved in my pre-op, surgery, and PACU care were the top of the line. I can not rave about them enough. The rest of my hospital stay sucked because my nurse was a twit and failed miserably at taking care of my needs. I'm not trying to whine or be self-absorbed, but I literally was there for over 6 hours and I saw her once. That's BS. If they are that understaffed, they need to get a hold of a POOL and get some bodies in there. That suffering didn't last long though and now here I am, feeling fabulous, without a giant wicked scar down the entire back of my head and neck. By the time it is all said and done, people probably won't even be able to see the scar! My husband marbles at the skill of the closer and people I show say something to the effect of "that's brain surgery?!?" :) I love it. It is like Dr. Di fixed Mother Nature's OOPS and now I am the way I am meant to be -- just like everyone else -- alive!

Wednesday, June 25, 2008

June 25 2008 - 12 days post op

Hello everyone! I have decided to write a blog to help clear up all of the questions I have received from my fellow Chiarians from the WACMA group. I have suffered from the effects of Chiari for 10 years, right after the back of my head bounced off a floor (long story, lets just say I was body slammed) though I have probably had it my whole life. My first experience was within that first month after the "head-bouncing" incident. I was at work, walking down a tiled hallway, and all of the sudden the floor tilted up and cocked to the side. It also turned colors. It was disturbing to say the least. After that, I started having all kinds of visual distortions along with auditory ones. I would be watching television and all the sudden I couldn't understand what they were saying! It was like they were speaking a completely different language! That scared me even more than the hallucinations! I became so frightened, I couldn't leave my house because the ground would appear uneven and unnatural. After about two years of hell, I got pregnant with my second daughter.
My pregnancy was horrible! All of my symptoms got worse and new ones appeared. I was told the entire time that I had anxiety and depression and was given all these meds to "calm me down". After I delivered my second daughter, my symptoms worsened (could have been some post baby blues) and I got an unrelenting three month headache from hell! All the while I was going to my doctor and begging for help. They tried to help but just couldn't find anything so they blamed it on the baby and stress and panic attacks. Very frustrating.

In January of 2001, I made a pact with God. I told God that I would go to the doctor one more time and if they found anything then I would continue to fight, but if they found nothing then I would end my life. I thought I was going insane. I made the appointment for that afternoon. I was barely able to walk into the office, I was so very sick. The NP walked in and I demanded she run a test for Thyroid. They had run that particular test before but it always came up "within range". (Don't get me started on my opinion of ranges!! They are BS!! Back then the range was up to 12, today that number has changed 2 times and is now down to 3!! My endocrinologist likes it at 1! Needless to say I was sick the whole time but the range was way off.) Anyway, she reluctantly ordered it and it finally came back out of range and I was treated for Hashimoto's Thyroiditis.

I know, I know, I am getting to the Chiari. Even after treatment for the thyroid issue, which they said did not cause my symptoms for the past two years and I still had to deal with my panic attacks and headaches and hallucinations, my symptoms got worse. A couple years after the first diagnoses, I was standing at line-up at the restaurant I worked at and I experienced what I can only describe as an electrical current that started in my left foot, up into and across my pelvis, and down my right leg. Then, both my feet got tingly to the point of pain. It drove me crazy to even let the sheets touch them! So again, off the the doctors (new doc though). They wanted to send me to a neurologist but before they could, BOOM, new job new insurance and back to the old doc. The old boy said I had probably broke both my feet and that he wouldn't even see me until I went and got an X-Ray of both feet to rule it out!! WHAT?!? I swear, doctors must smoke smack to get through med school and this dude was their dealer! Idiot. Needless to say, I never went. I didn't have the money to flush down the stool.

The foot thing went away after 9 months and the headaches were taking over my life. I was in so much pain and couldn't stay awake without sacrificing my humanity (aka insta-bitch). I had tinnitus (ringing in the ears), imbalance, IBS and other digestive issues, essential tremors in both hands, difficulty swallowing, eventually the foot thing returned, Reynaud's (bitter cold hands and feet), nausea, debilitating fatigue, blurred vision, word retrieval issues. probably a thousand other things, and lets not forget that excruciating headache. I asked my neuro if I had Chiari after seeing TCI's "Chiari Redefined". MS had already been eliminated and they were the only illnesses that kept coming up for all my symptoms. My neuro got upset because I was questioning his abilities as God, so I took things into my own hands. I contacted a doctor in Wisconsin who is a Chiari expert. He said that I had a "mild" Chiari of 4mm and that, based on my symptoms, surgery would benefit me. He proposed Chiari decompression with laminectomy. He would enter through a 6-8cm slash, cut through the dura and arachnoid space and burn my herniated cerebellar tonsils back into my skull and then sew up the dura using a patch from a cow's heart and then of course the 30 some-odd staples that will be impaled into my head! I looked at my hubby and said there has got to be a better way in the year 2008. It all sounded so barbaric really.

I researched and found a ladies story on the Internet with a pic that showed her "wound". She had gone to Dr. Di at the Cleveland Clinic. I made an appointment and he agreed to do the surgery. He does the decompression through a 2cm hole in the neck. The whole thing takes place on a TV screen. He took out the skull bone to make room for the tonsils - NO BRAIN BURNING - then he scored, or peeled back, the dura until he saw good spinal fluid flow using the Intra- Operative Doppler Ultrasound. Then he sewed up my tiny incision and that's it! I woke up and hung out in PACU feeling fabulous for a couple hours, no ICU, and then off to a regular room where I stayed overnight. I left the hospital less than 24 hours later. Easy Cheesy! I was told I could return to work in two weeks. My only restrictions were no lifting over 25lbs and hyper-extending my neck for the first 3 months and then no roller coasters or contact sports for the first year. That's it! After a year I am free to do whatever I like! (I love the Tilt-A-Whirl with my kids!)

If I hadn't found that ladies reference to Dr. Di and the Cleveland Clinic and Endoscopic Chiari Decompression I would have had my head hacked open like a watermelon, took my place in the land of zipperheads and probably still be in pain. I thank God every day for leading me on this path and now I would like to help lead other chiarians to a choice most don't know exists.
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