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Tuesday, April 16, 2013

Chiari diagnosis then surgery

Oh by the way, feel free to leave your comment on the bottom. I promise I won't least not too much :)
Now on to Chiari Malformation...
OOOOOHHHH!!! my head heats just thinking about it!!! j/k
If I have to have a scare for the rest of my life on my head/neck, why not say it and be embarrassed about it. Do I like having being sick? NO!!! who does??? That's a stupid question. It's almost like asking a person who just farted in front of you and it's just the two of you in the room. Did you just fart? C'mon now!! Sorry, I know. Let's be real!! No one wants to be sick. But at least I can joke, be a smart ass about it, I can scream about it, I can pretty much do whatever the hell I want; just like everyone does whatever they want with whatever they want with their life. I'm not laying down. Never have and I'm not about to start now.
This particular blog is going to feel more like a nightmare to you reading but believe ME, it's more hell writing it. I want it out there. I'm so sick of having it all built up inside where it's ripping out my guts. I wouldn't be surprised if this is what caused the Gastropareis stuff I have. With all the medications I have been on over the past...uuuuuuhhhhooooooooohhhh I don't...I can't remember...I know it's been over 10 years. I'm surprised I'm still alive. morphine patches, fentanyl much fake, chemical, heroin can a body actually take before it just says YOU'RE DEAD!!! YOU ARE DONE!!!
Doctors knows best, they say.
And so it begins...
Back in 2002...WAIT...let go back farther...7/7/ accident...banged my head a few times...some how ended up doing some kind of program called Phase II at Mt Sinai in NYC for people with Traumatic Brain Injury...I remember bits and pieces. I saved everything from when I was doing the program (only way I can remember it) and found a report not to long ago saying something about me having Chiari back then. but NO ONE mentioned it. OK. granted I can't remember anything because my memory sucks; but I think family members would have said something, right? If they knew about it...
Fast forward to 2002 since I'm not here to talk about my car accident or anything about it. you have questions, feel free to ask away in the little box below...
Ok...we are in 2002, I'm in crazy land. I had been for some time, NOTE: I'm very good at masking my feelings, thoughts and so on. I learned that growing up. Only let people believe what they want to believe because they never want to hear the truth. BUT this time I just couldn't control myself. The pain was so unbearable. My moods didn't know if they were coming or going. I would drop at a hat for no reason at all. When I say drop, I mean drop to the floor. I would just fall for no reason. My legs would just give up on me and I never once saw it coming. My thoughts were scattered and that was when I could think best if, at all. I couldn't even focus straight. I would constantly snap at people. PEOPLE!! Never mind people. I didn't even want to be around them. I hated them. The noise just drove me nuts. It just hurt inside and out. DON'T TALK TO ME!!! It really hurt physically. The vibration of voices just hurt. If people talked at a normal tone, it sounded like they were screaming. It was bad enough I couldn't focus because I was in so much pain as it was and have to explain was just too much. My jaw would lock or at least it felt like that even if I tried to move my mouth. Don't even mention food. It took too much work and it was just nauseating that awful smell. You want to sleep but you can't sleep. You are so tired but your awake. It's the worst roller coast ride from hell and I wanna get OFF!!! The way I started to walk was just odd and not me at all. I felt stiff at times for no reason. Some time it was just one leg or both or all my limbs, just fingers, the arm part but not the fingers, same goes for the legs. At times I felt like I was floating and could feel the ground under me and I would miss step end up falling. Felt like my eyes were playing mind tricks on me or my brain was doing it. But the pain. If I could just cut out the pain, I'd be happy. My brain felt like it was being squeezed by a crusher with no exit because of my skull surrounds my brain. Then my hair...OMGOOODNESSS my hair!!! If there are Gods of hair, please tell them to stop pulling my hair so I can at least lay my head down. I have to keep my hair short so the pain is less. I can't even touch my hair at times. I stayed in bed a lot because of the dizziness. Even being in bed I would get dizzy. These are some of the symptoms I have had and still go through. Chiari-Life expresses perfectly what it's like.
The neurologist I was seeing diagnosed me with MS and sent me to a psycho who said I was bipolar. I was being treated for both. neurologist also sent me to physical therapy (PT) because of the problems of motor skills, etc...During a session with PT she said she had noticed a few things that didn't correlated with MS patients. I didn't know what to think except to ask her what she thought I had. She said she wasn't sure herself but suggested I see a physiologist who does studies of everything. Lucky for me, PT office was attached to whole team of different doctors and one was coming to see a patient, she called him over. Long story short...I was admitted into the hospital and detoxed off all my medications (18 different meds), retested  and I was newly re diagnosed with Arnold Chiari Malformation I. This was in the summer of 2004.
It took two years to get the correct diagnosis, BUT at least I got it and I am very happy I got it. My new doctor explained to me what Chiari Manformation was and he prescribed me one medication. He also explained that I had a few decisions to make on whether I wanted to continue living the way I was or if i wanted to have surgery. He also express there was no cure for Chiari Malformation. If I chose to have decompression surgery there could only be three (3) out comes. A. I will come out of surgery with no complications and I may need to have an other in a few months, years or not. B. I come out of surgery paralyzed from the neck down or C. I don't make it. 
I was glad he put it so bluntly so I didn't have any surprises, but I have to say, I was scared out of my mind. I've had surgery before but this one had me. I was convinced I was not going to make it. With everything I had already gone through, there were no more 9 lives left in me. I didn't led on to anyone what I was feeling or thinking. Everyone knew I was scared. Who wouldn't. Never mind getting cut open but it's brain and spine they are touching. The doctor ever told me to do some research online. He told me about a few doctors; but suggested I do my own research as well. He already know how I was. 
I prepared a 20 page list of questions to ask these doctors. The way I looked at it was like this. If they are going to cut me, cut bone and can mess up because after all they are humans, I want some one who doesn't have the "God" complex. some one who has experience but not too much where he/she thinks he/she can't make mistakes, some one who has bed side manners (not in a rush to get to a "golf" game). Bottom line, I want the doctor to take their time with me and show they care about their patient and they understand what Chiari is and is there to help us. This one doctor just brushed me and my questions off by saying "You don't have to worry about that. I know what I'm doing. I'm a doctor." Well, guess what doc, you're fired. you're not touching my head. NEXT!! Needless to say, I went with Dr. Jonas M Sheehan, MD, FACS Milton S. Hershey Medical Center. He was AWESOME. The whole team was gRRRRRRRRRRRReat. Surgery went well. 
 Both photos is when I'm about to be wheeled of into surgery Sept 30, 2004.
The next photos I'm going to show you is after surgery. I was surprised he didn't use staples since all the photos I've ever seen, all have staples. 

It took about a year for me to fully heal from the surgery. part of my scalp is still sensitive on the side and around the area of the scar. The only form of exercise I can is in the pool. I can't go into the ocean. The deeper i go in, the more pressure I feel in my head for some reason. The following picture my scare from a Feb 16, 2011 ago...
A few months after surgery, I moved to Florida. It's been hard ever since to find a neurologist who can help me. Insurance issues. There aren't too many doctors who know about Chiari and it makes it even harder when they just want to give you a quick band aid and send you on your way. 
Now That I have shared a little history of what has happen, I will give you the "scoop" of the most recent events that have accord in the next blog...
Until next time...Blessed Be


  1. I remember when you had the surgery. I was thinking of you the whole time. I still think of you and how strong you are. You truly are an amazing women.

  2. Keep it going - everyone needs to be informed of this...who knows how many other lives you can help by putting this out there!!!!

  3. I'm hoping I can help by getting the message out. It's a constant battle and I'm not giving up.

  4. wow! that's someoperation, it hurts just to think of it. you are a real trooper Tanya.

  5. I have tons of pictures but i figured I'd spare the grief. hahahaha

  6. Love your blog. I just got the Operation decision brought to me officially yesterday. Had known it was a possible option. But knowing I have to decide to cut or to remain miserable has spun me for a loop. I also have GP like you do. Good to feel less alone