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Title: Guess one more update ... Post by Dave_Emond on Nov 1st, 2003, 3:35am Hey Gang, “Already dead and just haven’t got the good grace to lay down anywhere!” Well … almost. Might have a name now for this strange disorder that I’ve been going through. If we’re right, doesn’t look too good, but probably won’t kill me. It could however, change my whole lifestyle. We’re possibly now looking at a disorder (actually 2 combined) called Chiari I Malformation with Syringomyelia. Say that 10 times real fast :-X Of course, it has to be a very rare disorder, with no know cause or cure! Not a good time for me to sit at the blackjack table with this luck. I’ve gone to the message boards for people who suffer from this and read their posts, I could have easily written many of them. I registered and made a few inquires pertaining to if it sounded like I have the same thing. Their MB is quite like how CH.com first started, they only have about 280 members and are searching for answers as we are with CH. The first person to respond was also a CH sufferer, and had posted here often before. I believe her name is Kathy, but said many referred to her as using a pseudonym and that she was really Stephen King. Anyone remember her? Anyway, each day the pain increases and new symptoms come along for the ride. There is no comfortable position left at all. Then, all the tests, the blood work, the Spinal Tap, the Ultra-Sound, the shocking EMG and others I can’t think of now, were probably all for naught. With this, brain will show normal, blood would show normal, EMG would show normal, spinal would etc., etc. Thing is, it won’t show up in the Central Nervous System. This explains why all the different types of specialists I’ve been to kept saying, “This doesn’t make neurological sense!” My Doc is now going to confer with a neurosurgeon in Missouri, and give him my medical history and see if I need to go up there for possible surgery on the neck. It’s dangerous and has to take some real considerations before going that route. On the message boards, many have had to repeat this surgery over and over … Weeeeeeeeee!!!!! The rest, take extremely high dosages of Neurontin, some up to 2800mg’s per day! My Doc already started me on 100mg’s Neurontin and will ramp up to 300mg’s within a week. Then I go back to check for side effects and will probably raise it further. I don’t know, but I have to stop this chronic pain somehow, with the chronic CH on top of it, it’s getting to be too much. Oh well, all I can do is sit here and try to type, see the keys, but miss them often, good thing I have spell check! Try to keep myself busy with anything, going stir crazy though. Since I’ve already been labeled Tolstoy by some, I’ll just add links below to just what Chiari I Malformation with Syringomyelia is. Yeah, I already wrote a few chapters, so will shut up now, hope we're wrong :P http://www.asap.org/Chiari_Printable.cfm http://www.asap4sm.com/Syringomyelia.cfm Happy Happy Joy Joy! ::) Dave |
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Title: Re: Guess one more update ... Post by ClusterChuck on Nov 1st, 2003, 4:04am Well, Dave, at least ya have a name for it. That is a start! It is a lot better, somehow, just knowing what you're fighting. Now let's hope you can get to a level where you have some PF time. Once you get the pain under control, will you regain the proper use of your hands and legs? Keep us informed. Thanks for the update, I have been concerned about you. Prayers and vibes going to ya. Chuck |
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Title: Re: Guess one more update ... Post by Jackie on Nov 1st, 2003, 8:49am I've read the sites you linked....seems quite complicated. At least you're getting closer to a diagnosis which will lead to treatment and help. Bless your heart. Blake & I will keep you and Annette in our prayers. Hugs, Jacks 8) |
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Title: Re: Guess one more update ... Post by Prense on Nov 1st, 2003, 9:35am Name for it or not...that sucks Dave! I hope you get some relief soon. You are definately in our prayers. Hang in there! Chris |
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Title: Re: Guess one more update ... Post by BarbaraD on Nov 1st, 2003, 10:30am Lighting a candle for you. You know you're in my prayers. Hugs BD |
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Title: Re: Guess one more update ... Post by nancyc on Nov 1st, 2003, 10:51am You and Annette are definetly in my thoughts and prayers, bro. :Dnancyc |
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Title: Re: Guess one more update ... Post by Lori on Nov 1st, 2003, 11:34am No one should have to deal with all this junk. Sorry you must. Praying for a cure to it all!! |
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Title: http://www.medhelp.orRe: Guess one more update ... Post by maria9 on Nov 1st, 2003, 12:09pm Dave, glad to hear you finally have a diagnosis, sorry to hear of your continued suffering. I guess the bright side of this could be that a successful surgery might possibly bring an end to both the headaches and the symptoms. Here is another link: http://www.medhelp.org/perl6/neuro/archive/11769.html Take care, Maria |
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Title: Re: Guess one more update ... Post by Elaine on Nov 1st, 2003, 12:56pm Why is not for us to know but sometimes when people have so much to bear its hard not to question. I will be praying for you and your lovly wife! |
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Title: Re: Guess one more update ... Post by Dave_Emond on Nov 1st, 2003, 1:45pm Thanks All, Trust me, your prayers and support and Annette are the only reasons to keep going. I'll fight this as long as I can and hope soon we'll have some exact answers. Maria, thanks for the link, maybe through that I can find a closer neurosurgeon than Missouri. You all are very special to me and consider all of you as true friends who are always here for me. Am trying to think positive and even laugh at my luck, but it gets real hard at times, so I come here! Thanks, Dave |
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Title: Re: Guess one more update ... Post by ave on Nov 1st, 2003, 2:39pm Dave, I am close to speechless. What a load for one person to bear. You will be in my thoughts for some time to come. |
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Title: Re: Guess one more update ... Post by Margi on Nov 1st, 2003, 4:29pm Well, Dave and Annette - at least you've been pointed in a definite direction now and can put a name/names to what you've been going through. Knowledge is power, remember. I bet the first cluster you had you wondered what the heck was happening to you too, didn't you? Now, at least with clusters, you know what it is and what weapons you need in your arsenal to combat it. You'll soon learn what you need to fight your next battle. Sure doesn't seem fair that you're being asked to carry this load, Dave, but you've proven time and time again that you are very strong. With Annette by your side giving you even MORE strength, I predict you two will be back here soon announcing that you've found treatment! Keep plugging along, you two - know that you're not in this journey alone. You both continue to be in our prayers. Margi & Mike |
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Title: Re: Guess one more update ... Post by Charlie on Nov 1st, 2003, 10:48pm Sorry about all this Dave. As I say: How about one friggin thing at a time? No one should have to go through this. Evolution has a long way to go and we're born too soon. It's sucks having to suffer because of sloppy design. If you now have an idea what you're dealing with, maybe you can get a handle on this new horror. Let us know what we can do. Charlie |
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