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Old 02-12-2008, 05:53 PM #1
DoubleBike DoubleBike is offline
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Thumbs up Greetings from a Newbie

First of all... your stories, experiences, and perseverance is inspirational and I wish you the best in dealing with these often difficult symptoms.

I'm new to Chiari and am hoping to learn as much as possible from you kind folks. I've always been very active with excellent fitness (cardio-wise), riding 7000+ miles yearly in cycling events, up steep mountains and such. I'm happy to say my life has been peaceful and mostly stress-free, and I live a normally very healthy life with my equally active wife. As a youth, I played a variety of sports, mostly baseball and tennis, and never experienced anything odd. Now at 44, and still active, I began experiencing slight balance issues and sometimes difficulty focusing my vision as of 6 months ago. My PCP, ENT, and a PT thought this was some sort of a vestibular (inner ear) issue, but a January 08 MRI showed Chiari I with 8-9mm.

My coordination/balance issues are fairly mild but very from day-to-day. Most folks wouldn't know anything was even going on, but I definitely feel it. One day I stepped out of bed, loss my balance, and fell into our nightstand. A couple of weeks ago, I had difficulty focusing on the road while driving through a stretch of road that was sunny-shady-sunny-shade due to the bright sunshine flashing through a bunch of naked trees. That last a few minutes and I almost had to pull over as I slowed my driving. A year ago I began experiencing muscle cramps regularly on the tops of my feet during my bike rides. Last Summer I began feeling intense pain in the main joint of both big toes. Last week, I watched my little toe twitch into this awkward position, almost like it'd become dislocated, then it popped back into place... all by itself. A lot of this is actually funny and could just be me getting older, but I can't help but wonder if it these are the beginnings of something more serious yet to come. Three days ago we went bicycling for 3+ hours, felt great, and the next morning I awoke with an amazing pain in the side of my neck which is just now allowing me to move a little more freely.

Looking back now, other things that seem suspicious are how in my mid-20s I developed sea-sickness on half-day deep sea fishing ships after having no problem in my early 20's. And, I've always had to pause for a couple of seconds when getting up quickly, due to a dizzy feeling (which my PT believe might be due to my low blood pressure and low heartrate).

I've seen a neurologist which has examined by MRI and believes I have Chiari Type I, and I'm seeing a well-known neurosurgeon in 2 days to get his thoughts.

Do I need to take a chill-pill or is there a realistic possibility that my life and activities will soon be changing significantly. Did some of you begin with similar symptoms? Did any of you began seeing your first symptoms in your 40's, like I am? Did these symptoms ever stabilize or go away? Do you suggest backing off on intense cycling workouts, heavy lifting, etc.

I apologize for the long post, and appreciate any of your thoughts. Best wishes to you all.
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Old 02-20-2008, 04:15 PM #2
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Default whew, that'sa lot

Hon, far as what yer going through, lemme say I feel you!!!! Far as whether to keep up with your currently active lifestyle. I'd say within reason go for it. However, get yourself an excellent NS and/or NL to confer with on those activities. Remember, your sense of balance is off, so you might not wanna go on extensive bike rides, unless you have a partner with you incase you get into trouble. Personally for me, heavy lifting increases symptoms, so I try not to do it (although repetitive lifting of light weight has the same affect as well, so *shrugs*).

I can understand how "mild" symptoms can possibly be as dibilitating in their own right, as more "serious" symptoms. When my symptoms were severe, people were jumping to help at every possible instant. Sometimes I had to even defend my own personal right to do what I COULD do. But after surgery, with more mild symptoms on a daily basis.... what I hear more often than not is, dont worry about it so much, buck up and just do it, get yerself together and stop feeling sorry for yourself etc. etc. etc.

Anyway, I've written about my personal Chiari experiance in a previous thread if you want to browse through it. If ya have any questions, dont be afraid to ask.

God Bless you!!!!

Dawn
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Old 02-20-2008, 06:09 PM #3
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Default Back from the NS

Dawn, thanks for your kind response. You're a special person. I visited with a respected NS last week, who looked at my MRI, radiology report, and my personal notes. He's initially told me that he doesn't believe my symptoms are Chiari-related... but I personally believe he's intentionally being optimistic. At the same time, he's requested that I get a CINE MRI to get a better understanding on my CSF flow, and has also setup a visit with a local balance/vestibular lab to run extensive tests. My gut tells me it's Chiari though.

Last Saturday, my wife and I went out for a 3 hour ride over gravel roads at a moderate pace. We had a blast and I felt great that evening and night. However, the next day I awoke with an incredibly sore neck, particularly on the right (the side where I have most cerebral tonsil herniation). I literally could hardly walk from the spasms that would fire in the side of my neck, and spent much of Sunday not moving. Things got a little better in the evening, but this continued for 4 solid days. Each morning I would experience intense pain (couldn't move my neck) which would gradually ease somewhat throughout the day, only to get worse again the next morning. Thursday there was much progress and Friday morning I was almost completely normal. However, I still feel some tension, now in the back and base of my head, and am beginning to wonder if this is the start of the halmark chiari headache. It's just a dull ache at this point and I've had it for a couple of days now. Against my neurologist's suggestion, who suggested I avoid "tense" activities, I decided to do some pull-ups... just to see if this would promote the Chiari symptoms. (My neurologist believes I have ACM1, while my neurosurgeon is the one being optimistic and telling me it might be something vestibular but let's do more testing.) Right now, it's looking like she may have been right. I'll know more in a few days.

So for now, things are on hold until the CINE MRI which is in 2 weeks. I'll share more after that.

Thanks Dawn!
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Old 02-21-2008, 05:03 PM #4
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Default Yer quite welcome sweetie!!

Some of the best advice I can give you at this point, is to be pro-active in your health. Read what you can from respected sources to better familarize yourself with the conditions your facing. Even if you dont "understand" all the jargon your doctor throws at you at the time, makes notes and actively search out answers to your questions. Or have your wife do it if your not able to at the time due to health or fatigue.

I really think there is a fine line between actually understanding something, and having it make sense. However, during your researching, keep your mind open, dont zero in on one thing and get fixated on it. Make sure that every definitive diagnoses makes sense. Even after almost eight years of living with and researching about Chiari, I'm still learning something new every day about the condition.

Just keep your hope and faith alive. When I was first diagnosed with Chiari, and told about surgery, I really thought life as I knew it and understood it was over for me. However, I will never be able to express the amount of blessings I have recieved since surgery, that I probably would have never stopped long enough to even recognize in my "previous life". Remember, this is not the end. This is the rebirthing of the new you. Many, many times, birth is a painful and unsetteling process. But the miracles we can reap afterward are endless, if we are only open to the possibilities.

Keep us informed of your progress!!! And God Bless You and Yours!!!

Dawn
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Old 02-21-2008, 05:14 PM #5
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Default Thanks!

Dawn, Thanks again for your encouraging and inspirational words. I'm certainly learning a great deal about Chiari these days. I'll be keeping close watch on my progress as I test my reactions to various activities. One common theme that I keep hearing from all the doctors is to stay active for various reasons, but don't overdo it. At this point it seems I may have some minor Chiari (fortunately no pain) as well as some vestibular damage. Upcoming tests will help us understand more. I'll post back then. Also, sorry for the duplicate info I posted in my last posting (and was already in the original)... that one I can blame on me, not Chiari. Best wishes and thanks!
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Old 05-19-2008, 10:43 PM #6
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Default Also newly diagnosed as Chiari Malformation

At 44 I am also a Newbie in terms of my diagnosis and had almost forgotten about my toes cramping up a few years ago until you mentioned this in your posting. As I recollect over various ailments that I have encountered since my late twenties (e.g. dizziness, vertigo, poor circulation, intermittent palpitations, etc) I realize that my recent diagnosis just acknowledged that something had been wrong all these years and not just somatic complaints. It is only when I begun to have varying intensive headaches this year that my second Brain MRI revealed a Chiari Malformation, which was never interpreted on my MRI a few years ago. I am presently reading a book called "Conquer Chiari", which can be purchased from Amazon.com, which I have found to contain helpful information, especially for me at this confusing and emotionally trying time.
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Old 05-20-2008, 09:53 AM #7
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Default

Thank you Melan. Yes, I also read this book and have thoroughly enjoyed it. Thanks for your concern. Best wishes, Juan
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Old 05-20-2008, 10:11 AM #8
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Default Followup

This is a bit overdue but thought I'd post in the hopes it'll help someone. As mentioned earlier, I attended the UVA Vestibular Balance Center and they ran maybe 8-10 different tests on me. Most of them involved me sitting comfortably in a chair, while strapped so that I couldn't move. The chair was much like an upright barber's chair, and it was inside a small room. The lights were turned off, and small images were then flashed in different directions upon the wall as if I were spinning. Later, cold air was run deep into each ear for additional tests. At the same time, I wore something over my head with two small optical wires that could see my eye movements. The doctor (in another room) and her machines/programming could analyze my vestibular processing by studying the eye movements. Very cool. Well, the result of all this is that we found my right ear was 57% weaker than my left ear, with regard to processing balance information. (Note: my hearing is perfectly fine in both ears.) It's interesting that the right ear deficiency couldn't be pinned on the Chiari Malformation, or possibly nerve damage from a virus. When this info was shared with my NS, he believed the issue was not Chiari and was likely an inner ear issue. At the time I thought he was wrong, but am now beginning to believe him because my sympoms have improved since these tests. I still haven't recovered all of my "perfect" balance and still experience nystagmus about once a month, but I'm also staying very active. I often spend 10 hours a day on a weekend doing yardwork, and bicycled for 6+ hours (115 miles) just this last weekend. I do have to be careful (move slowly and take my time) with left and right head movements when vision and balance are especially needed. But, I can live with this. I fortunately have never had headaches or common issues often tied to Chiari. I'm sure in time will know if this is the beginning of something worse, with Chiari... or if I simply sufferred some sort of permanent vestibular loss due to a virus and my current symptoms will stabilize. I believe my body has somewhat compensated for the initial nerve damage, peaking (in Feb) 5 months after it possibly occured, as my balance/vision issues gradually improved since mid-Feb. They also seem to flare up just a little bit after spending hours mowing our property, so possibly the dust is stirring things up just a little bit. Hope this helps and if anyone needs additional info, please just let me know.
Take care, Juan
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Old 06-12-2008, 07:54 PM #9
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Default Another great book!

Doublebiker you have received many wonderful posts & great information!

I would like to suggest another great book called, Contents Under Pressure, By Ray D'Alonzo

The tests your Doctor is running are excellent and he sounds knowledge!

Please keep us all up to date & we will keep you in our prayers.
Blessings,
AZ Syringo Chiari
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