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    Old 11-08-2008, 11:39 AM   #1
    clueless42
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    Just diadnosed with Chiari yesterday

    Hi!

    New to this board, been on the thyroid disorders board for about 3 years, hashimoto's thyroiditis.
    Any way, I went for an MRI Monday 11/3, ordered by my chyropractor. Chronic neck & shoulder pain, also had sharp pains shoot up the back of my head when I sneezed, coughed or laughed. Have had these symptoms for several years but they would come and go, not this time. SO, found a large syrunx, 4.3 x 0.8 x 1.2 cm, upper cervical cord posterior to the C2, C3 and C4 vertebral bodies. Went for another MRI with contrast Wednesday 11/5 and got the results last night - Chiari malformation and syringomyelia with cord syrinx.
    I have an appointment with a neurosurgeon Monday 11/10.
    AAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHH HHHH..ok, now I feel better!
    I've been doing some reading, including this site. It's all over whelming, as you all know.
    It looks like the only way to correct this is surgery. Other symptoms I've had -
    - pain in arms and hands
    - swelling in right hand, x-ray showed minor arthritis
    - weakness in hands, trouble opening things
    - went kyacking and my arms and shoulders were killing me! Had to go back
    - lost balance a few times but grabbed something before falling
    - pain and stiffness in legs
    - coughing ALOT, feels like something is in my throat. Now have sore throat
    - jaw pain
    - pressure in back of head that wraps around jaw up to ears
    - ear pain
    - pain in feet
    - sinus pain and congetsion
    - cognitive problems, memory, organization, problems understanding simple concepts

    A liitle history - I'm 45, will be 46 in February, female, diagnosed with hashi's 7/05, had left lobe removed 8/05. Have had a lot of difficulty gettin optimized on thyroid replacement meds.

    Does this sound like your stories?

    Thanks!

     
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    Old 11-08-2008, 11:54 AM   #2
    clueless42
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    Re: Just diadnosed with Chiari yesterday

    Oops...left out fatigue!

    AND is anyone familiar with the Chiari Institute? I live in NY, it'a about an hour away.

    Thanks again!!

     
    Old 11-08-2008, 12:17 PM   #3
    bethsheba
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    Re: Just diadnosed with Chiari yesterday

    Clueless,

    It sounds more like Lyme Disease than it does Chiari....and kayaking and New York State are two things that put you at risk for Lyme Disease.

    If it were me, I would get a second opinion on the Chiari and I would schedule an appointment with a Lyme Literate Doctor...I wouldn't settle for a diagnosis of Chiari if it was possible that my condition was actually Lyme Disease, treatable, and curable. My understanding is that Chiari is not! The docs make waaaaayyyyy too many mistakes and I would not allow myself to be one of their mistakes.

    Bethsheba

    Last edited by bethsheba; 11-08-2008 at 12:19 PM.

     
    Old 11-08-2008, 02:03 PM   #4
    cindys601
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    Re: Just diadnosed with Chiari yesterday

    Hi Clueless~

    It can be very frightening and overwhelming learning that you have Chiari as well as SM (a syrinx). Educating yourself at this point is the best tool you can use in the care you will need. most general neurologists aren't familiar with chiari and the symptoms it can cause on our nervous symptoms. Having SM is a serious condition related to chiari and should be addressed as well.

    If you are in New York and your insurance allows you to go to TCI (The chiari Institute) then by all means go!! They specialize in chiari as well as the related disorders and they know what they are doing. I had my 1st surgery there in June (tethered cord surgery)and I can't say enough about them. There, you will be in safe hands!!

    All of the symptoms your describing can be chiari related. I have all of these as well. The biggest problem being the pressure and pain in the head and neck which radiates into my arms. It is constant and not much helps relieve my pain but to lie down.

    Kyacking can be a dangerous sport with chiari. There is a big lists of don'ts as you'll learn. Any activity that can cause sudden jerks in your neck should be avoided. Contact sports, trampolines, amusement rides and so on. We really have to be careful not to cause ourselves further damage.

    As far as surgery goes, it all depends on your condition, the progression and the symptoms your having. With SM it is more complicated. The CFS flow can be blocked from the herniation, obstructing the flow. That can cause the syrinx. If its large, it can cause permanant damage to the nerves. So please, find yourself a good neurosurgeon. If I can help in any way, feel free to shout out.

    But know your not alone. And you'll get through this. Hang in there

    Cindy

     
    Old 11-08-2008, 07:33 PM   #5
    clueless42
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    Re: Just diadnosed with Chiari yesterday

    Thanks Cindy!!

    I looked at the site for the Chiari Institute and they do not take any major medical plans. I did not see any of there docs listed on my plan. I am seeing a neurosurgeon Monday that has an excellent reputation, several people have mentioned him to me. He also does not take my insurance but I do have out-of-network benefits. After I speak to him I think I will probably go to the instiute any way. Whew! So much to understand!!!
    Feeling pretty scared today, it's all so new. OK - deep breath......
    I'll have to look for that list of dos and don'ts.
    Thanks again!!!

     
    Old 11-08-2008, 08:33 PM   #6
    cindys601
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    Re: Just diadnosed with Chiari yesterday

    Hi Clueless~

    It is alot to grasp and so much to learn. But once you start, the pieces of the puzzle start fitting together. For me, it did. I then knew why I was having severe taccicardia and bowel and bladder issues that Dr's couldn't figure out. It brought clarity to me. But your right, a deep breath because its a slow process from here on.

    TCI has a great world of knowledge. There are forms and symptom lists as well as videos that can help. As far as insurance, I have BSBS. The surgeons are out of network but the hospital wasn't. Thats something you can delve deeper into.

    I am glad your seeing a neurosurgeon that has a good reputation. But many will say they are not sure if your symptoms are from the chiari. If that happens, its worth the out of pocket expense to get to a chiari expert.

    Being scared is normal but you'll be ok. You just have to now be good to your body. No heavy lifting, pushing, pulling or straining as well as those other things I mentioned. And if your anything like me, fatigue is a big issue. So listen to your body and rest when you need it

    Let us know how you make out on Monday. Thats right around the corner. You got in quickly so thats great!!

    Try to do something you enjoy tomorrow to take your mind of it all. Then monday you can take the bull by the horns

     
    Old 12-10-2008, 07:37 AM   #7
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    Re: Just diadnosed with Chiari yesterday

    Hey Clueless,

    Your post caught my eye.... The reply regarding Lyme... I actually had Lyme many times - incuding IV treatment - and that is actually what lead me to the Chiari diagnosis. What I thought was continued neurological lyme was really chiari with cervial syrinx. I demanded a MRI to r/o any and found the chairi /syrinx which accounted for most all of my symptoms.

    It took me 2 years to get diagnosed and I am under the care of a neurosurgeon who bounces back and forth with his treatment recommendations for me. Over the past couple of months my symptoms have gotten worse with more neck pain and arm weakness and pins and needles etc...The headaches and vision problems are just a given. At any rate, I am heading to the Chiari Institute next month for a second opinon on treatment options. Givien I have restriction in my CSF flow and a syrinx and lots of symptoms popping up I need to see the best of the best, Your health is worth it.

    If you have out of network benefits you should re-consider the Chairi Institute if you are still looking for a Dr. The way it was explained to me is the visit with the NP and Neurologist is considered in my network and I will not be billed but the Neurosurgeon consult is not so I need to pay the $550.00 up front and then I will submitt (because I do have out of network benefits). At any rate, I hope you have gotten some answers to your questions and are on the path to healing...

     
    Old 12-10-2008, 09:26 PM   #8
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    Re: Just diadnosed with Chiari yesterday

    hello trigal
    Well I know what you mean about the whole Lyme thing...I'm sure some people do have undiagnosed Lyme,but it's a rare thing and I guess drs. can just say it's Lyme when they can't find any other reasons for a patients symptoms....seems pretty lame to me.I don'tknow if it's just laziness on the drs. parts or if it's more to do with the insurance company calling the shots.

    Sorry to hear you've been having so many symptoms from the Chiari.Well I have a 6mm herniation,but no syrinx and no other consistencies of a Chiari I Malformation>they say it's just "cerebellar tonsillar ectopia".....figure that one out.
    I too had Extreme Weakness in my arms/legs/feet/hands,pins'n needles in hands/feet and off and on neck/shoulder pain.I only got the "back of the head" Chiari headache when I was due for a period or after a period...now I'm in menopause,but I still get that headache once a month...go figure.

    So I don't have the extreme weakness or the pins'n needles anymore.I have low B12 and the B12 shots took care of all that.Every couple of months I've gotten much stronger.So I guess my neurologist was right.....it wasn't the Chiari...it was the B12.I still wonder about all of it though.

    My symptoms all started(and I had a Ton of them!)when I started peri-menipause...then they went away...then they came back so much stronger..I still can't figure it all out...and no dr. seems to be able to either.

    I heard that your hormones can effect you when you have MS...so I think maybe they can do the same when you have Chiari...who knows....

    Well please know that you're not alone...I'm here for you...I care about everyone and I know what it's like to have this Chiari thing...you feel like you just ant it to go away and the drs, just seem like they can't agree on what to do about all of it.Who wants to be a "guinea pig" at the hands of a neurosurgeon when the whole medical industry can't agree on what's the best way to treat Chiari?

    I still think back to a very excellent neurologist who told me that the neurosurgeons are making a fortune on doing decompression surgery for Chiari when the symptoms aren't really from Chiari,but something else.At least there doing other things now..like at the Chiari institute they fiound out a tethered cord is what causes the symptoms in a lot of people wih Chiari.

    You know my friend Cindy had the tethered cord surgery and it helped her soooo much.Next she's having the neck fusion and she might not even need that decompression surgery....thank goodness!!!!

    I think when you have a syrinx and blocked CSF flow it is quite a bit more serious.Having a neurosurgeon who is very educated in Chiari is the most important thing to me......they Have to know if you're really a candidate for the surgery and not just operate on everyone who has Chiari.That's why they saysome people get better from the surgery and some get worse and some stay the same....Something Is Not Right about that...I feel that in my heart and soul.

    Anyways I wish you well and please pop back on here again.......take care~

    Scout

     
    Old 12-22-2008, 09:01 AM   #9
    clueless42
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    Re: Just diadnosed with Chiari yesterday

    Hi!!

    I had decompression surgery (PFD) and laminectomy (C1 ring & C2 arch) 12/2. I had a local NS perform the surgery, he was highly recommended. I also went for a second opinion, an NS from Columbia who specializes in Chairi. The NS who perfomed the surgery use to operate at Columbia so the 2nd NS knows him and said I was in good hands.
    Duraplasty was also to be pereformed but do to excessive bleeding (something about a venous lake) they could not perform it.
    I feel pretty good!! Most of the pain and numbness are gone. My right hand was very weak and is much better!!!
    I'm going for physical therapy tomorrow. I had MRIs of my thoracic and lumbar spine performed prior to surgery and I did not have a tethered cord.
    Recovery can take a while so I'm relaxing for now. I started driving about 2 weeks after surgery. I don't go back to work until 1/5 and it's great to be off for the holidays!!
    I will keep you posted on my recovery.
    Thanks for all your support!!! I don't feel so overwhelmed now!!

    HAPPY HOLIDAYS!!!!!!!!
    Peggy

     
    Old 12-29-2008, 06:50 PM   #10
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    Re: Just diadnosed with Chiari yesterday

    hello clueless

    so happy that you are doing well after your surgeries...that is Great!

    hope you continue to feel better!

    thank you for letting everyone know how you're doing.

    Scout

     
    Old 01-05-2009, 09:55 AM   #11
    trigal
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    Re: Just diadnosed with Chiari yesterday

    Hey Scout! I never got to thank you for your reply to my post.....I sometimes take a looong break from the computer since it seems to trigger some of my symptoms - plus I recently had dental surgery and the meds - I swear- make my symptoms worse. I come to find that some meds can cause an increase in spinal production - maybe that is why I had a non stop light show for three days after my dental extraction and implant. At any rate - thanks for your comments on the lyme thing. Some people like to attribute EVERYTHING to lyme - I was never one of those people, nor am I one to attribute everything to chiari but you/I most certainly know when it is being churned up. I am off the TCI in about two weeks and am excited and scared at the same time. I really do not know what to expect - I really hope that they take time to understand me as an individual human being and the ways that chiari has effected my life which now are no longer acceptable. Quality of life can only be definied by each individual person.....I use to race half -ironmans and marathons and compete on a national level.....I can't any longer....maybe I never will be able to but I want the chance to be able to train again and work out and sit at the computer for hours on end writing my book and just be able to do all the things that made my life what it was....I want the chance to have some of that back. I know I may not get it all back but I feel that the way I feel now is not okay anymore and I need to try something....I call it hope....TG

     
    Old 02-25-2009, 03:43 PM   #12
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    Re: Just diadnosed with Chiari yesterday

    My son was diagnosised with chiari and he is 13. I am very scared. What do I need to know?

     
    Old 06-03-2009, 01:32 AM   #13
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    Smile Re: Just diadnosed with Chiari yesterday

    I don't personally have a Chiari malformation, but my best friend, whom I stayed with the entire time, had her decompression surgery May 20th. She had her surgery done at the North Shore Long Island Jewish Hospital where her neurosurgeon, Dr. Bolognese is the best in the field. I got to ask him a bunch of questions about the malformation itself. It is not caused by an infection. Rather, he said, its caused by a birth defect. I guess something called celebellar tonsils are suppose to grow in a distinct opening, but a birth defect causes this opening to be too small. So the celebellar tonsils grow incorrectly, in her case, they were enlarged and were being pulled down her spinal cord by the tethered cord. So literally her brain was being pulled out of her skull, and down her back. Apparently many people have the malformation, but they never show any signs or symptoms. It is apparent on the MRI when it is compared to a normal brain.

    She also was diagnosed with Tethered Cord Syndrome and a blockage in her CSF flow. However, after her decompression surgery, the neurosurgeon told us that there was more significantly more CSF flow, so we're hoping it continues. And possibly in 6 months, after she has fully recovered, she'll have the second surgery to correct the tethered cord and she'll be good to go.

    Apparently, they did some shock therapy or something of that sort (I didn't fully understand what the neurosurgeon was talking about) to shrink the celebellar tonsils. ??? But I congratulation you on you're surgery. I could never imagine the kind of guts it takes to get the surgery. You're brave, so is my best friends, and all of those who opt for surgery. Even though the neurosurgeon constantly reassured us nothing would go wrong, it was a horribly nerve wrecking experience.

    But she said that her pain, even though her head is still in a lot of pain from the incision, is a LOT LESS than before the surgery. And she's starting physical therapy next week. I wish you luck in everything you do, and I'm glad your decomp surgery went wonderfully!!

     
    Old 09-14-2010, 05:40 PM   #14
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    Re: Just diadnosed with Chiari yesterday

    If I hadn't done research myself I would be in the ER with my symptoms at times. They don't help, I am dreading my next MRI because I know there are changes. Including urinary incontinence, burning in my ear drum, tightness in my jaw, cognitive changes, speech....it's horrible....but good luck with your journey, my continues.....

     
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