Chiari Malformation Community
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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Help Needed :)

Hey Everyone,

         I'm about 1 minute ago new to the group. I was diagnosed with Chiari when I was 19 years old after many many many many tests and hospital visits. I've been getting migraines with visual disturbances most of my life but over the last 2 years I've been displaying other symptoms as well. Laughing, Sneezing and most physical activity now gives me headaches of varying intensity. Sensitivity to light seems to be getting worse and worse ( I have to wear sunglasses outside at night and I can't turn on the lights in my office anymore). I have neck pain and numbness most days and my left hand is numb more often than not. I also have depression but I guess it's hard to know if the Chiari itself is causing that or the helplessness at not being able to fix it or any of the other million things that happen in any given day :).  There are more but these symptoms make day to day the most difficult.

           I have been seeing the same neurologist since my diagnosis and he still maintains that nothing can be done and these are just symptoms I'll have to learn to live with and work around. My doctor won't refer me to another neurologist for a second opinion and I can't get a new doctor because that's just about impossible where I live. Any advice anyone could offer would be greatly appreciated. Is my doctor really allowed to refuse my request for a referral? I know the people on here aren't doctors but what do you guys think? Has anyone else been told they'll just have to live with it?? Thanks for any help or advice you might be able to give me.
5 Comments Post a Comment
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620923_tn?1416285879

  Hi and welcome to the Chiari forum.

Many with Chiari are not surgical candidates and for them, not much can be done even if they have symptoms, but if ur symptoms are changing in intensity and u r getting new ones, u should have a CINE MRI to see if ur herniation has changed that it is blocking CSF....if u have an obstruction, surgery can restore flow.

We do have a list of Chiari specialists in  Canada, I know ur Dr will not refer u, but mayb he is willing to consult with one?

If by doing that he may find there are ways to get u some help and then refer u....use the list to research the Drs as the list is not a referral or endorsement....they are just Drs of members here, that have used them.

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1386992_tn?1371607904
Hi Kate,

It certainly sounds like Chiari is causing your symptoms, based on my experience and others I have met or spoken with. selmaS is right about needing a CINE MRI. The length of your herniation does not impact your symptoms, but the CSF does.

http://www.conquerchiari.org/subs%20only/Volume%202/Issue%202(3)/Cine%20MRI%202(3).html

Have they looked for a possible syrinx? When was your last MRI? If you haven't had one since talking with your neurologist or shortly before that, then you should request one.
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Avatar_f_tn
Hi there,

        thanks for the advice. The neurologist I've been seeing is already on the list and the only one anywhere close to me. I haven't had a new MRI in about 2 years so I'll make an appointment and request one. He's a fairly nice man but I always feel like I'm being rushed through appointments and every time I go in he just asks me to track my symptoms for the next visit but hasn't looked at anything I've been writing down yet. I've been doing it for a year and he usually quickly flips through a couple pages hands it back and says good keep it up.

            I'll ask him about a new MRI and mention the CINE MRI. Do symptoms typically get worse over time? I have a very physical job in the developmental services field which I know is not ideal. Could that be the cause of worsening symptoms? Sorry I haven't done much research over the last couple years as things weren't unbearable for me. Thank you all for your help. :)
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Avatar_f_tn
Oops.. should have mentioned I have a 6mm herniation
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620923_tn?1416285879

  What u do at work can be the reason ur symptoms have flared and u feel worse.....lifting, straining, can all lead to increased symptoms.

As for the Dr u see being on the list, as I have said the list is not an endorsement or a referral, it is here merely for u to use to research Drs.....it is not meant for u to select one to go to...please research the Dr and make sure he/she is the right one for u.

Size of ur herniation is not really of concern, if u have a CSF obstruction or ne other related conditions ....that is what u need to focus on now.
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