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08-20-2009, 10:32 AM | #1 | ||
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So I'm probably going to do the surgery at the end of Sept or beginning of Oct. |
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08-20-2009, 11:14 AM | #2 | ||
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09-16-2009, 09:01 AM | #3 | ||
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My name is Angie! I am not sure how to reply on this site so i hope this works! I also have all of the symptoms you have discussed! What you are experiencing are exertional head aches! Without the decompression surgery I am guessing it wont get better only worse! That was exactly what happend to me anyway! I also thought I had a tumor! How scary! The decompression surgery extremely helped the exerional head aches! They completely dissapeared! I do have problems with liquids and choking!!! You are not alone and I wish for you the best of luck! Please research your surgeon! Make sure he has done MANY decompressions!!! I wish you well! Sincerely Angie
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"Thanks for this!" says: | Hockey (09-16-2009) |
09-16-2009, 10:15 AM | #4 | ||
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Fortunately, both neurosurgeons I saw were very knowledgeable in Chiari Malformations, and I went with the one that I felt the most comfortable with. Thanks for sharing. 1 week to go! *crossing fingers - Kip |
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09-09-2009, 07:41 PM | #5 | ||
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I hope everything is working out ok for you. I have symptoms similar to yours if not just a little more severe becuase I have started showing signs of nerve damage but I am having the exact opposite reaction from my doctors. They think that I need to do everything in my power to avoid surgery and it should be used as a last resort. I know that surgery (especially brain surgery) is major is isn't something to take lightly but I would like someone to even consider it a possibility because it is the only cure. Like you said, some symptoms might not improve like the headaches and the pain because there is no way to prove that they are connected to the chiari but at least the nerve damage would stop progressing (or in your case, wouldn't have a chance to start! WOO HOO). Please let us know how things turn out for you. I have another appt sched for Oct 1st to discuss surgery again but we'll see if anything changes. I hope everything works out for you! Thanks -Sarah |
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"Thanks for this!" says: | Hockey (09-16-2009) |
09-14-2009, 05:41 AM | #6 | |||
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THESE ARE THE SYMPTOMS
http://chiarione.org/symptoms.html And another pieceof advice if you have been al;ready diax you need a Neurosurgoen not a neurologist and you need a specialist.
__________________
Remember That Life Is Short!!!" break the rules, Forgive quickly, Love truly, laugh uncontrolably, And never regret anything that made you smile |
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"Thanks for this!" says: | Hockey (09-16-2009) |
09-17-2009, 12:28 PM | #7 | ||
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Your post is encouraging. I haven't thought much about symptoms I could possibly end up with if I DIDN'T do the surgery. I have only been thinking about what my symptoms are, and how they are mild compared to a lot of people's stories. 6 days and counting. And good luck to you in your future doctor visits. kip |
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10-01-2009, 12:19 PM | #8 | ||
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had my surgery 8 days ago today. slow and steady wins the race. the first few days in the hospital were hell. there's just very little relief or comfort available right after the face, and i had trouble with a lot of the painkillers they tried, as well as a potassium IV drip that felt like it set my arm on fire.
I was only in the hospital for 3 nights, but it felt like forever, and I was glad to get home, and be able to take my pain meds on time, and rest when I wanted, and mostly to get all those IVs and junk out of me. I'll post again in a week or so. Getting my staples out this coming Monday. kip |
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