Site last updated: 05/17/05 22:07 (PST)
WELCOME TO AMY'S WEB PAGE!! |
UPDATE AT BOTTOM OF PAGE! |
Hi world. I guess I should
introduce myself. I'm a 25 year old female with Arnold-Chiari Malformation
1 (ACM1). I'm going to use this site as an update for family, friends and
anyone who wants to read about me.
I started my journey learning about and living with ACM1 on May 16, 2001. I have learned a lot about ACM1 or Chiari (Kee-ar-ee) and myself. I have linked some of the best site for information and one to a site to order a Chiari Awareness pin in the right column. Since May 16th I have had various symptoms and been in and out of the hospital. I've been to the ER twice once for the loss of consciousness on 5/16 and once for severe convulsions on 6/3. I was admitted to the hospital over the weekend of 6/22-25 for a sleep study. I've had a cardiac work-up and a seizure work-up both were normal. I had an MRI on 5/21. The results of the MRI were 'possible ACM1.' from then on I have researched ACM. I was finally diagnosed on 7/25 by a neurosurgeon. On 8/28 my surgery was scheduled for October 18, 2001 at Madigan Army Medical Center (MAMC). I'll back track now through almost all that I have been through: Everything started with an episode of probably fainting. I really don't know, to this day I still don't remember the morning of May 16, 2001. All I know is that I 'woke' on the living room floor at about 7 AM, an hour late for work. I called the last number that called, I don't know why, and it was work. The person I talked to at work told me to call 911. I didn't call 911 I passed out again and was found on the couch by my husband, Eric, at about 8 AM. Eric took me to the ER and I was examined with the normal tests; blood, urine, cat scan (for the head injury) and an EKG. All of my tests were normal. I was referred to my primary doctor. My primary doc was on leave (I'm a military spouse). The doc I did see did another EKG and referred me to neurology. A few days later I saw my 1st neurologist, a resident by my choice. I wanted to know what had happened I 'volunteered' to be seen by a resident. I think it was a good choice now. I was sent for more blood work, 2 EEG's and an MRI. I was lucky with the MRI. There was a cancellation as we were waiting to make the appointment so I got the MRI right away, normally a month wait. Then it was wait to see the doc again. By the time I went to see the doc again I had plenty of problems. I had headaches, vertigo, dizziness and nausea all day and couldn't say what I wanted to say half the time. I couldn't concentrate at work, I was a nursing aide at a retirement home, that's dangerous with passing medication. I worked only 2 days in a 2 weeks time, I was let go just after Memorial Day weekend. I would've done the same if I were them. When I went to see the doc again I was ready to know what was wrong with me. The doc said I had 'borderline' Chiari. I had no idea what that was, I do now. I started researching online and found the full name was Arnold-Chiari Malformation. I read all I could and joined a support group on Yahoo!. I found Chip's page and was scared to death looking at his operation pictures. I was not thinking I would have to have surgery. I also learned that there is no 'borderline' with Chiari. I saw the doc again after my tests were done, all normal, and was asked about being in the ER recently. I was taken to the ER by Eric for full body convulsions, now under control with medication. The doc ordered a 96 hour sleep evaluation to 'catch' the convulsions. They didn't want to be 'caught.' I did get to see the neurosurgeon, but the neurosurgeon I saw was 'visiting' and didn't have room in his schedule to do my surgery. I was just glad to hear someone say I did have something and it was fixable. We figured with my new neurologist, the other was transferred to another post, that I would probably need an MRI of my spine. The doc also set up an appointment to see a physical therapist for my neck spasms. Symptoms before surgery: vertigo, dizziness, nausea, migraine headaches, neck pain, neck spasms, right arm tremors with electric-pain, intolerance to light and noise, the heat makes the headaches very bad and so much more off and on over the day. This is something that has made me stay home most of the day and sleep over half of the day. I'm glad that we don't have children right now because I wouldn't be able to care for them, as us I have a hard time caring for myself some days. My surgery date was October 18, 2001. Well that date has come and gone. I am now in post-op. I continue to update and receive e-mail about Chiari and this site. I plan to update this site for many more years. If this is your 1st visit please read the archived updates. It's been a while since I type here so I thought that I would add a note. I've been doing great since the surgery and have had no problems. I was given a clean bill of health on the 22nd of January 2002. I still have a minor herniation remaining, but I'm not concerned with it because Dr. W was not concerned. If I start to have problems I will know what to do and hope that I will find a doctor as kind, compassionate and learned as Dr. W, I owe my recover to God, him and everyone that was praying for my recovery. I thank you all. If you think you might have Chiari please get an MRI and have it read by a doctor that knows something about Chiari. There is a list of doctors on the WACMA web site that know about Chiari and were placed on the list by Chiari patients. Please support Chiari awareness by ordering a "Zipperhead" pin from WACMA. We need to make people aware of this illness and find better ways to treat the symptoms. |
My
favorite Chiari web sites:
WACMA (has list of doctors by state that are familiar with Chiari) American Syringomyelia Alliance Project Inc ![]() Click to subscribe to chiari
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Upcoming
appointments:
NONE :) :) :)
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Other links: |
What is a Chiari Decompression Surgery??
Update!! 05/17/05 If you have been checking here regularly either you think I'm doing so good I have abandoned the website, doing poorly and abandoned the website or just plain forgot about the whole thing. Well it's a bit of all three to tell the truth. I'm like everyone else I have my good days and my bad, but I never really forget about the site here on any given day. I always say, 'You know I need to update that website of mine," but I just never do, until tonight. Well things are going really good, I'm still working as a Pharmacy Tech for the hospital full-time but Eric is working as an internet tech support supervisor for a local company. We are both doing the best we can for each other and living day to day. We are entering our fifth year together and still learn something new about on another on occasion. I have the best job for someone with Chiari... night shift! I work 23 hour night shift 7 on 7 off. Sleeping during the sunlight helps with the headaches. I'm also on Topamax which is helping a lot. I have only a few problems with it such as the tingling in the fingers and toes, but that's really nothing new. I've been several weeks without a migraine. I'll take tingling over a migraine!! Well that is all for now. I rearranged the archives so they are easier to find and read, so if you are here for the first time feel free to read at your leisure. Here's a cute site about surgery in general. It is a funny site and is in no means graphic or gory. I would strongly suggest that any parents trying to explain surgery to their children this would be a great site. I hope you enjoy Peep Surgery. Amy
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Site last updated: 05/17/05 22:07 (PST)