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Chiari Malformation

1,098 Views | 10 Replies | Last: 6 yr ago by Cole97
Dad-O-Lot
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AG
Anyone here have any experience dealing with chiari malformation?

My daughter has been diagnosed via MRI and CAT Scan. Dizziness became so bad she couldn't stand. She is currently in the hospital waiting to be seen by a neurologist.

Not sure what to expect at this point. Most of what I've read says the only way to treat the underlying cause of the symptoms is surgery. Most also seem to discourage surgery if symptoms can be managed with drugs.

I really would prefer my 19 yr old daughter not have to be on a drug regimen for the rest of her life, but am really concerned about the prospect of brain/skull surgery.
People of integrity expect to be believed, when they're not, they let time prove them right.
Kool
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AG
A/C malformations come in a huge variety in terms of severity. There are many people who have undiagnosed A/C malformations, and there are also many who have CT or MRI evidence of an A/C malformation but who require no therapy at all. There are specific guidelines as to who needs surgery, hope your daughter doesn't need it.
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Dad-O-Lot
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AG
She is having symptoms; sometimes severe.

I am not sure when to make the change from managing with pharmaceuticals to surgery.

currently waiting on additional neurologist evaluation.
People of integrity expect to be believed, when they're not, they let time prove them right.
Dad-O-Lot
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AG
The neurologist believes the A/C Malformation is not big enough to account for her symptoms. Back where we started not knowing what's going on.
People of integrity expect to be believed, when they're not, they let time prove them right.
shihitemuslim
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AG
Does she have exertional headaches. Did the doctor get a MRI of the cervical spine to evaluate for a syrinx? What city do you guys live in?
txags92
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AG
Cole97 is the one you want to talk to. She has it and went through surgery for it in the last few years.
Dad-O-Lot
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AG
shihitemuslim said:

Does she have exertional headaches. Did the doctor get a MRI of the cervical spine to evaluate for a syrinx? What city do you guys live in?
She hasn't complained of headaches. There was an MRI, but they never mentioned a syrinx.

Austin
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shihitemuslim
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AG
How much cerebellar tonsillar descent is there mentioned on the MRI.

The classic symptomatology of a Chiari is exertional headaches (classically seen like when having a bowel movement). I'm not sure if she would improve in her symptoms with surgery.

If you are in need of a neurosurgeon in Austin, see Vincent Wang there. He is an ethical guy and I know him. Bring your images and have him review it with you.
Briigo99
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I have just recently found out about Chiari Malformations so I started researching more about it and many of the symptoms are what I have been experiencing for awhile now. I have scoliosis and was braced for about 2 years until I stopped wearing it and the doctor said I was ok because I was done growing but I have had continuous pain and many other side problems along with it. Anyways, I was just wondering if y'all happened to know where to start? Like what doctor I should see to get a diagnosis or tested for it? I was just reading that you have to find a doctor that knows about this and I am not too familiar with many of the doctors here in College Station. Any recommendations? I saw a few that were listed in Houston but I would prefer to find a doctor here to avoid traveling.
nrm02
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AG
I found out about my Chiari in 2005 after having MRI for shoulder issue. I was having weakness and tingling in shoulder down to hand. Saw a neurologist and was told my symptoms were not associated with the Chiari. In 2012, headaches were so severe I was put on prescription pain pills. Symptoms with weakness and tingling started in both shoulders and radiated to hands. Balance issues started as well and would get sensations that I was falling while sitting in a chair.

I had surgery and the symptoms went away. My thought is go talk to a neurosurgeon. I highly recommend Dr. Bogaev in San Antonio.
shihitemuslim
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AG
You need to treat the Chiari first. Then monitor the scoliosis. If there is progression of the scoliosis, that may need to be treated.
Cole97
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AG
Dad-O-Lot said:

The neurologist believes the A/C Malformation is not big enough to account for her symptoms. Back where we started not knowing what's going on.


Find a new doctor, seriously. There are too many doctors that believe the size of the herniation is the only thing to go by, and that is just not the case. The doctor should really be looking at the severity of the symptoms.

The problem is that all the doctors argue about it and there isn't a whole lot out there for education for the doctors that are supposed to know.

My first neurologist was an idiot and very obviously knew nothing about Chiari. Even when I brought research to him, he blew it off.

There are some good doctors for Chiari in the area, some better than others, but there is no real Chiari "specialist" (all they do is Chiari, or mostly do is Chiari) in Texas at all. It's kinda disheartening.

Lastly, if you go looking for support groups or info online, be careful with Facebook. There is a handful of people that are not very nice, and they are on most of the biggest groups. If you have a different opinion than one of them, they all attack like rabid dogs. It's quite sad really. They really went after a local newscaster that was recently diagnosed with Chiari because of some things she was told by her doctor that she mentioned. It got pretty ugly.

Good luck with everything. I will say I am better after surgery than I was before, but there are other issues.

If you have any questions, I'm happy to answer. You can pm me, or you can email me at either coleag97 or austinareachiari. Both of them at gmail.

Good luck to you both.
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