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    Old 07-17-2008, 01:40 PM   #1
    Dpatt491
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    Question Chiari symptoms

    Hello,

    I was recently diagnosed with Chiari I, and I've been steadily thinking about some of the things that have been happening to me over the years, and wondering if they are related to chiari.

    One, blood in mucus
    Two, after sneeze, I lose my voice for about half an hour.
    and three, pain im my hand, as if I strained a ligament, pain that won't go away.

    Has anyone experienced these symptoms?

     
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    Old 07-17-2008, 09:31 PM   #2
    cindys601
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    Re: Chiari symptoms

    Hi DPatt~

    Welcome to the boards. Its great that you were given a Chiari diagnosis and not just wondering what is wrong.

    Chiari can cause many symptoms and vary in each of us individally. Blood in mucus is not one of these and I would definately address this with your primary care DR. Its so easy for us to blame everything on Chiari but we have to be careful because some things could be unrelated and become ignored. So check that out for your own good!!

    Nerve pain is common and I have had pain in my hand and wrist. This was before my dx and was told I had a pinched nerve. Its not fun.

    I haven't personally had any voice changes but have read other peoples stories and complaints about this.

    Have you done much research on Chiari or have a treatment plan in place or are you just watching your symptoms at this point? Research and being knowledgable in this condition is your best defense.

    take care

    cindy

     
    Old 07-18-2008, 04:16 AM   #3
    Dpatt491
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    Re: Chiari symptoms

    Thanks cindys601,
    You seem to be the chiari guru here at the boards. I was just dx of Friday, so I'm still in denial, but I swear I've had symptoms for years. I remember about 12 years ago, everytime I would sit up, I would have a dizzy spell that glassed my eyes and almost caused me to fall off a ladder at my job, it lasted about a month and hasn't happened since. The major symptom showed up about 2 years ago, the pressure headaches, I love to laugh and it's killing me that I can't enjoy laughing without my head feeling like it's going to explode.
    One more quick question, should I be worried about working, can I hurt myself worse since I have a fairly physical job?

     
    Old 07-18-2008, 05:21 AM   #4
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    Re: Chiari symptoms

    Hi Dapatt~

    Wow, you are very new to this. I can understand why you are in denial. Its alot to bite off and understand for sure. And saddly it is very misunderstood by the medical community. Most Dr's believe that only a large herniation can cause symptoms but infact thats untrue. How did you come to realize you had Chiari? What was the size of your herniation, if you don't mind me asking?

    We can live with this for many years not knowing we are experiencing things that are related. Like the dizzy spells you had. I get that same feeling, as if my eyes are filled with moisture and they get very blurry. I used to think the things that were going on were normal and it happened to everyone. Now that I have a name for this, I'm finding out that others don't have these strange goings on as I do. I just never asked.

    And laughing, I get terrible pressure from that too, but then thought everyone must have the same. I love a good laugh but suffer for it after!! And laughter is such a healthy thing to do too. So I can comepletely understand what your going through.

    You asked about work and many people work and do just fine. But heavy lifting, pulling or pushing can make things worse, so be very careful. Also, if your climbing around, your at risk for falls and that can also be dangerous. So be very cautious. Head trauma can cause more damage.

    I had mild symptoms since I was 22. I'm 42 now. About 4 years ago, I was rear ended in my car at high impact and it has been a down hillslide from there. So I treat my body with tender loving care these days. LOL. If its a struggle to do it, I don't. So awareness is good.

    You called me the chiari guru. LOL When I was diagnosed, there was such little information here on the healthboards. I know there are others out there who are struggling and wanted to get some support and information out there for them. Its scary not knowing much about all of this. So here I am and if theres anything I can help you with, just shout out!!

    Take care

    Cindy

     
    Old 07-18-2008, 10:53 AM   #5
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    Re: Chiari symptoms

    Hey all,

    I'm new to the boards, but definitely not to Chiari. Was dx and had surgery 10 years ago. Surgery was probably the best thing I could have done for myself back then, but now I'm having some serious complications again.

    One of my nsgs main concerns when diagnosing me was my very rough hoarse voice. It just changed overnight 1 night in high school and never returned to normal. Changes in voice tone is definitely a symptom of chiari.

    Hope to talk to fellow chiarians.....

    Tina

     
    Old 07-18-2008, 12:05 PM   #6
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    Re: Chiari symptoms

    Hi Tina~

    After 10 years, you definately know what this life is like living with Chiari . Did you have the decompression surgery at that time or other surgeries as well? I am just beginning my journey. I was diagnoses in April and had tethered cord surgery June 16th.

    Your surgery must have given you many years of relief so I'm happy for you for that and sorry to hear now that you are having some more serious complications. Have you seen anyone to determine the problem your having or a plan of action in place?

    Its great to hear from a fellow chiarian as well. Welcome to the boards!!

    Take care

    Cindy

     
    Old 07-18-2008, 06:05 PM   #7
    Dpatt491
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    Re: Chiari symptoms

    Hello again cindys and welcome tina,

    Thank you first of all for the help and support, I still have so many questions since I've never heard of this until last week. I told my family doctor about the headaches I was having, and he very humbly said (which you don't see a lot in doctors) that he didn't know what it was, so he scheduled me to have a ct scan, that led to an MRI, and that led to my diagnoses. My doctor sent me to a neurologist and he said that I had Arnold Chiari Malformation(Arnold always gets left out it seems He said that my herniation is 1 cm, (I guess this disorder was discovered in Canada, metric system) and more than likely I'll need an operation. That's where I'm at now, I have another appointment on the 28th, where he will be flooded with questions.

    I hope you both get to feeling better soon, even though we're all a little different, it's comforting to know others have been where I'm going and have done well.

    I guess I am now a Chiarian!

     
    Old 07-18-2008, 07:55 PM   #8
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    Re: Chiari symptoms

    Hi Dpatt~

    I remember when I 1st found out about my ACM too, and theres just so much to learn. I'm still learning all of the related disorders and so much more. So in time, you'll gain knowlege and understanding. I'll help answer any questions if I can help. But it sounds like you have a great couple of Dr's on board and your diognosis was quick. So be greatful for that!!

    They are telling you you'll need surgery which is so much more than alot of us get from Dr's. Most often we are told that Chiari isn't causing our problems. So you are extemely lucky with that!! I know when you hear you'll need surgery that it is a scary thing to hear. Though there is no cure for chiari, surgery can halt the progression and at best, allievate symptoms. Left untreated, there can be permanent, irriversable damage. So surgury is well worth it, in my opinion. But it is a personal choice and only yours to make. Thats why I suggest learning as much as you can.

    There is alot to learn that is misunderstood by alot of drs so my suggestion for you is to learn as much as you can before you go so that you will be able to advocate your health in the best possible way. 10 days till your next appointment isn't bad at all. It will be here before you know it.

    We definately can be called a little different, us chiarians. "normal" people will never truly understand the challenges we deal with and the pain we endure on a daily basis. If only they could walk in our shoes for just one day. For me, I have learned acceptance with having been diagnosed with chiari and thats how I cope. I listen to my body, rest when I need it and don't overdo. Life is definately different but my motto is "Adapt and overcome!!"

    So welcome fellow chiarian!!

    Cindy

     
    Old 07-19-2008, 11:19 AM   #9
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    Re: Chiari symptoms

    Thank you so much for all the assistance! I feel like I'm better equipped for what the future holds, I'll keep you posted.

    Derrick

     
    Old 07-20-2008, 07:37 AM   #10
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    Re: Chiari symptoms

    Hi Derrick~

    Do let us know how your appoinment on the 28th goes. Keep us posted!!

    Cindy

     
    Old 07-23-2008, 12:45 PM   #11
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    Re: Chiari symptoms

    Hi Derrick and Cindy,

    Derrick-Honestly, I'm amazed that your dr told you he didn't know and referred you on. That rarely happens with this lovely disorder. I've been told that I have mental problems, that a herniation of 20mm couldn't possibly cause "all these problems" and all kinds of other garbage. I just bet you will have a list of questions for the dr on the 28th. Good for you!

    Cindy-The only other surgery I had was a csf leak repair. I don't have tethered cord per one of my many MRIs. My problem now is I have cerebellar slumping. The dr who did my surgery did it too aggressively from what I gather and now my cerebellum has slumped down into the hole. I've had it for several years, but now it's getting to where the fluid is getting blocked again, and I'm dizzy and falling alot. I did see Dr Frim in Chicago when I was 1st diagnosed with the slumping and he was wonderful. He wanted to take my dura patch out due to massive scarring, and all kinds of other stuff. But I'm not from Chicago, and back then people very rarely traveled for surgery. I'm thinking of going back to him.

    Take care
    Tina

     
    Old 07-23-2008, 01:10 PM   #12
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    Re: Chiari symptoms

    Hi Tina~

    I'm so sorry to hear that your having more difficulties. I have heard others that have had a too agressive decompression and had problems such as yours. That is quite scary to entrust our bodies to Dr's that are not experts in these surgeries, only to have them repaired by another. I do hope your able to get the help you need to "fix" this. This is important for you to follow through with.

    As far as traveling goes, I think its well worth the effort to get it done right the 1st time. Or to go for a fix to a reputable chiari expert!!

    I wish you well!! Take Care

    Cindy

     
    Old 07-24-2008, 04:25 AM   #13
    Dpatt491
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    Re: Chiari symptoms

    Hi Tina,

    I really feel that the reason I received an early dx is because of people like you and Cindy paving the way, forcing these doctors to look deeper into this disorder. It's just like anything else, you're our trailblazers, and we newbies benefit from your blood, sweat, and tears. Thank you.

    I'm with Cindy when it comes to traveling, best to get it done right the first time, it's something I'm contemplating, even way out here in California, only the best to cut my head open. If anyone knows of any Chiari Specialists in California, let me know.

    Derrick

     
    Old 07-24-2008, 07:36 AM   #14
    cindys601
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    Re: Chiari symptoms

    Hi derrick~

    There is a list of Chiari specialists that I refered to and Dr. Ulrich Batzdorrf in los Angeles CA was listed. I have no personal experience, nor have I heard of him myself. I only know of TCI in NY and DR Oro in CO. But this list shows a star next to dr's that are either a Chiari expert or recomended by peers, many patients, or are known to have expertise in the field of Chiari Malformations.

    I would definately research any Dr before letting them do surgery and know in your heart they are reputable.

    Take Care

    Cindy

     
    Old 07-25-2008, 01:50 PM   #15
    Dpatt491
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    Re: Chiari symptoms

    Hi all,

    Latest update on me is that I have 2 MRI's coming up, one on the 31st for my cervical spine and one on the 1st for my lumbar spine. They want to have these results before my appointment, so the moved the appointment with my neuro to Aug. 7. Then I got a call from a neurosurgon for an appointment on the 13th, so I'll be busy for the next few weeks. I will update you all when I know more. Thanks for the support.

    Derrick

     
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