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  • Diagnosed with Chiari today

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    Old 10-14-2010, 04:52 PM   #1
    babrams819
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    Diagnosed with Chiari today

    Hey all,

    After 1 1/2 years of constant Dr visits, it seems we may have an answer to my husbands many medical issues. I'm just looking for anyone out there who has been through a similar situation and would like to hear your thoughts on how you proceeded, surgery, no surgery, etc... ?

    Hubby has:
    Balance and spatial awareness problems (running into walls, etc.)
    Numbness in extremities (is it to about elbows and mid-calf)
    Vomiting with most often with no apparent reason (most recently up to 2 x's per week, but at least 2-3 times a month)
    Poor vision (to the point of legal blindness without his glasses)
    Frequent urination (On the hour)
    Just went through all the stuff to treat sleep apnea.
    Basement low testosterone levels

    Thoughts?
    Thanks!

     
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    Old 10-21-2010, 01:54 AM   #2
    reneestrand
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    Re: Diagnosed with Chiari today

    My daughter has Chiari Malformation for more information regarding this to help you make an informed decision try some of the following sites.
    The Chiari Institute or the Chiari Center Foundation. There is a lot of support out there.
    Best of luck!

     
    Old 11-08-2010, 07:55 PM   #3
    jenandmike
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    Re: Diagnosed with Chiari today

    Quote:
    Originally Posted by babrams819 View Post
    Hey all,

    After 1 1/2 years of constant Dr visits, it seems we may have an answer to my husbands many medical issues. I'm just looking for anyone out there who has been through a similar situation and would like to hear your thoughts on how you proceeded, surgery, no surgery, etc... ?

    Hubby has:
    Balance and spatial awareness problems (running into walls, etc.)
    Numbness in extremities (is it to about elbows and mid-calf)
    Vomiting with most often with no apparent reason (most recently up to 2 x's per week, but at least 2-3 times a month)
    Poor vision (to the point of legal blindness without his glasses)
    Frequent urination (On the hour)
    Just went through all the stuff to treat sleep apnea.
    Basement low testosterone levels

    Thoughts?
    Thanks!



    Hi
    I was just diagnosed on Thursday- I was rushed to the hosp twince in 2 days w/ excriciating head pain in the back of my head, just abovemy neck, only way to describe it, i thought I got shot. no othert symptoms, came out of the blue.

    For a few years, I have had headaches off and on, but nothing tylenol wouldnt help. the past month, my neck and shoiulders really started bothering me, but again, thought nothing of it.

    At the ER, MRI of neck and brain revealed Chiari malformation stage 1, 7 mm. basically its when your brain starts leaking into your spinal cord- just got back from neuro surgeon today and have to go for 3 more MRA and test my carotid artery to make sure nothing else is going on, then we will be set up for cranial decompression surgery, b/c I cant live w/ this pain.

    Best of luck to your husband

     
    Old 11-11-2010, 06:38 PM   #4
    flintrock
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    Re: Diagnosed with Chiari today

    Sister had the surgery and is good as new.....quick recovery too!!
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    Old 11-12-2010, 08:45 PM   #5
    miraclegurl
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    Re: Diagnosed with Chiari today

    I have a chairi malformation, it was found in oct. of 2005,it took me 10 years for doctors to figure out what was wrong..I had to resign from my job,the balance and nausea got so bad,and visual problem,and numbness in arms and legs..I finally got to see this neurosurgeon,and he looked at my mri's and seen the chairi malformation,but i also have neck issues to..I did have chairi surgery in june 2006,to releive pressure on the cerebellum..It was called decompression surgery on brain..It did help me tremendously,the nause and balance problems,and numbness and other issues got better over time,after healing from surgery..Im glad i had it done,my neurosurgeon is a excellent doctor..I thank god i found him..Everyone dont have to have surgery,but it did help me..Sounds like your husband may have others health issues too..Which i did too..But tell him dont ever, ever give up..I know sometimes it can get frustrating,but seems like you got a diagnosis now,sounds like u on right track..Good luck ,i keep you in my prayers..It will get better..Im living proof..

     
    Old 11-18-2010, 01:43 PM   #6
    monkeymom
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    Re: Diagnosed with Chiari today

    I also have Chiari. I have found that everyone fights a different battle with this. I chose to have decompression surgery due to the fact I had zero flow on the antieor side of my spine. The fluid caused a backup that compressed my brain even further causing my optic nerves to swell. I lost a lot of balance, depth perception and bladder control.. I had severe sweating dizziness and also vomiting.

    During decompression the neurosurgeon discovered that my C1 vertabre was so compressed against my spine that when he removed the vertabre, the vertabre impression still remained. I slowly regained my depth perception, most of my balance and my optic nerves have gone down.

    Things I am dealing with now:
    I have neuropathy in both of my legs - I do not know if this is related to surgery or chiari.
    I still have some balance issues and depth perception
    I cannot tolorate heat
    I burn easy - sunburn
    I have Trigeminal nerve damage, which causes a crazy amount of pain.
    I have double vision
    Several other issues....

    I am not trying to scare you in the least, but you and your husband will have to decide if decompression is for the best. I know my symptoms would have progressed due to the lack of spinal fluid to the nerves. So surgery for me was the best option.

    If you choose to have surgery, be prepared for a down time of at least 3 months. I was non functional for the first year after surgery, but my condition and story probably is different.

    Find a surgeon who is willing to take on this. Even if it's a consult. Find also a neurologist who will be able to help with the pain management and other issues possibly. If he is having the vision issues, consult with a eye doctor that will do a scan of his eyes. That is how my optic nerve issue was discovered, starting my journey with Chiari. Living with an "unkown" diesease is hard, most have never heard of Chiari, let alone treated it. Do your own research too, you are your best advocate. Know enough about what you are dealing with the ask the questions that will get results. I assumed that the "professionals" knew the best route, but some did not even know what Chiari let alone how to begin to treat it.

    Hope this helps in some way. Hugs as you start your journey.

     
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