My Tribute to Creating Awareness for Chiari Malformation!

1. Chiari Malformation Type I What is Chiari Malformation ? Chiari Malformation (Arnold-Chiari) is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms.

2. Symptoms The most common symptom of Chiari malformation is a headache, which begins at the back of the head (neck) and radiates upward. The pain is often made worse or can be brought on by coughing, sneezing or straining. These activities are known as valsalva maneuvers. Visual problems such as nystagmus (involuntary eye movements), double or blurred vision may occur. Balance difficulties, vertigo and dizziness also may be present. Some people may have cranial nerve compression. This can result in apnea (cessation of breathing), gagging, swallowing difficulties, facial numbness or syncope (temporary loss of consciousness). Patients may have muscle weakness, particularly in the upper extremities, coordination problems, and gait abnormalities. Imaging of the spine may reveal a fluid collection inside of the spinal cord, known as a syrinx. Some individuals may have hydrocephalus, a buildup of fluid in the ventricles of the brain.

6. If I am quiet or in a non-talkative mood, don't assume that I am in a bad mood, I am merely trying to come to terms with what I can no longer achieve, and can no longer do all that I want to do, and that it is very frustrating for me.

7. I might be exhausted from dealing with the pain and discomfort, or trying my hardest to do the things I once did on a daily basis.

8. Don't take for granted the things you did today, because tomorrow those things may not be that easy.

9. Don't pity me, I can do that very well for myself at times and I do try my hardest not to sink deeper in to it.

10. Don't compare me to other people with "similar" pain issues, everyone has their own problems, some worse than mine, some not so. Some people have managed to come to terms with it, I just haven't yet. Pain is different in all people. Not even two Chiarians have the same symptoms, although we do share a common bond.

11. I know it could be a lot worse, and I am grateful that it isn't, I really am, but it doesn't make me feel less pain or feel any better. In fact sometimes it makes me feel down that there are people that are worse off than me. I just can't imagine.

12. Just because I am in pain, doesn't mean that I can do something about it. Tylenol, Ibuprofen, or Aleve - they aren't a cure all. Some medications don't even work, or they give me bad side effects.

13. Don't tell me what I can and can't do, don't label me as disabled. I do want to try and do the things that I used to do, but if I can't, then at least I have tried and proved that to myself. Don't get angry with me for trying over and over........ I will get the message eventually.

15. Don't think that just because I can do something today, that I can do it again straight away, or can do it tomorrow or the day after. My symptoms can change daily, my energy levels and patience can be sapped by the simplest of tasks one day, and appear easy to do the next.

16. Try and treat me "normal", I will respect that and will be very grateful. Try and encourage me to do "normal" as much as possible - Well as "normal" as I was a year ago!

17. Don't make exceptions for me, I will do that myself.

18. Don't be upset if I cancel long standing plans at the last minute - I want to be there, and I am trying to be there but sometimes I can't and don't have the energy to.

19. Learn about my condition and it will be easier for you to either help me when you can, or be aware that sometimes I do need help and haven't asked for it, or that I really don't mean to be rude or ungrateful. I am very grateful, I NEED friends now more than I ever have. You will know why I react in the seemingly wrong way sometimes........it will help you stop feeling like you have upset me..you haven't.

20. Don't be afraid to ask me how I am......I won't always give you bad news, so don't ask expecting it. But sometimes I might - so don't ask if you don't want to listen.

21. Help me to see my behaviour through your own eyes - but take a step back first and try and see it through my own.

22. Don't think that I am just in pain and that's the end of it. There's a reason that the pain is there, and I really don't have any control over it.

24. Don't be sad that you cannot take my pain away, don't feel helpless because you cannot help me, what's the point in us both feeling frustrated and useless? Most of the time, I can't do anything about the pain myself.

25. If I tell you that I cannot do something, please don't get upset with me. I just really am not able to do it. Just "listen" to me, that's all I ask.

26. If you ask me to do something and awhile later it still isn't done...it isn't because I forgot (ok sometimes I do) and it's not because I'm lazy(but I can be), it's just because I don't have any energy left. Sometimes all I can manage to do is to sit around or sleep, and it doesn't mean that I expect you to do everything for me. It just means that I can't do as much as I may be expected to or as much as I used to do. I will get around to it. Tomorrow I may feel better.

27. My life has changed drastically and not for the better. Please don't expect yours not to change if you are involved in mine.

28. Know that I still love you, I might shout, I might yell, I might complain, I might get frustrated easily and lose my patience quickly. I am very grateful of the help and support, just don't make me beg for it.

29. I have a lot to come to terms with, I have a lot to face up to, it takes time to do so and even longer to accept. Believe me in the last year these are two things I have had to learn for myself.

30. Frustration can bring out the worst in all of us - I don't do it on purpose.

31. And If you are standing behind me in the checkouts - Please don't talk amongst yourselves about the scar down the back of my head/neck and take guesses as to how it might have happened. My ears work perfectly well and I can hear you. If you want to know, ask me. I can't hide it and don't want to.

33. Know that I do understand that even though I may be the one with Chiari, I understand it affects you, and hurts you too.

34. And know that someday, once I learn to live with it, life will be easier....AKA I will be easier to live with(maybe).

36. The procedure that was performed by my Neurosurgeon was a Sub-Occipital Craniectomy, Duraplasty with Bovine patch, c-1 laminectomy and titanium implant. In layman's terms...a piece of my skull was removed to make room for my brain, the Dura over my brain was cut open and a patch made of cow heart was put in its place, also to make room for my brain. The backside of my first cervical vertebrae was shaved off since my brain came down into my spinal column that far, and a titanium plate was screwed to my skull to cover where the piece was removed. I had a total of 28 stitches.

37. I was in surgery for about 4 hours, and in recovery(PACU) for 2 hours. I was then put in the Neurological Intensive Care Unit(NICU) for 24 hours. I was finally moved to a regular room where I stayed for 2 days and was released.

38. My incision is from the middle of my head down approximately 8 inches.

39. I was off work for 3 months while I recovered.

40. My Journey Con't...

42. Together We Can Find A Cure

44. Education, awareness, and research are our weapons.

45. Compassion and conviction are our guides.

46. Strength, courage, and determination will sustain us.

47. We will win.

48. http://www.conquerchiari.org/index.htm

50. http://www.asap.org/

52. Proud Zipperhead since 2/23/2009

53. Any questions please feel free to e-mail me at: [email_address]

54. Looking for fellow “Chiarians” in and around the Western PA area to start a support group.