Questions to Ask Neurosurgeon (Chiari I)

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Hi everyone,

I was formally diagnosed with Chiari I yesterday (8mm herniation, 34 y/o.) and am in the process of being referred to a neurosurgeon. I need a little help deciding what to ask the surgeon when we meet.

I'm not 100% convinced that surgery is the answer right now. I do suffer from headaches almost on a daily basis, but they're not quite as bad as the migraines I get. I have fullness in my right ear and tinnitus in both ears. I'm sensitive to sound and light and get headaches with I exert myself, (ex: walking fast, picking up heavy objects, sneezing, coughing, etc). I experience some balance issues but they're not severe. I've lost some sensitivity in the right side of my face and just discovered yesterday that that the reflexes in my right leg and not as sharp as they are in my left left leg??? Not sure what that's all about.

Having said this, I kind of feel like I'm being a wimp compared to others who have severe symptoms such as gait issues, severe balance issues, fine motor control issues, etc.

Not sure if I'm really a candidate for surgery so I need some really thought provoking questions to go to my neurosurgeon with.

Thanks for your help!!

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Specializes in ER, IICU, PCU, PACU, EMS.

I would suggest you speak to others with the same syndrome.

Here's a link to the World Arnold Chiari Malformation Association.

http://www.pressenter.com/~wacma/index.htm

Perhaps people going through the same thing will have better answers to your questions.

Good luck!

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Wow, I never thought I'd see this here! It's always comforting to have someone around who's been where you've been... Here's my story (warning: long!).

I was diagnosed with a very slight Chiari I malformation when I was 17 (4mm herniation). It took several doctors weeks to diagnose. While mine's only half the size of yours, I do suffer from mild syptoms that seem to come and go. Tinnitus and headaches that start from the occipital area and work their way up behind the eyes. I used to get slight weakness of the right side (leg and arm) and I still have some trouble with that side of my body when I work out (numbness and shaking). I constantly have the common symptom of an abnormal gag reflex.

Anyhow, my story there for you :redbeathe.

Mine is small enough that my neurosurgeon pretty much asked if I wanted surgery or not. This was 14 years ago and they still didn't know much about it so I was too chicken to go for it. Now, I have a way of controlling the headaches and so what, I gag on more stuff than most - it's kinda become a joke between myself and those closest to me :p.

I personally say that unless it's becoming debilitating to my everyday life, I'm not going to put myself through that kind of procedure. From what I've read, it can be quite invasive and, depending on your doc's method could involve the removal of several cervical vertebrae and having a shunt put in place. This is just from my Internet research - not what I know from personal experience. As I age, I notice symptoms increasing more and more, so I'm really doing my homework.

I don't think you're a wimp at all. If it's becoming problematic and interfering with your life, see what your neurosurgeon has to say. Maybe he/she will not see the need for surgery at this point either. It is a scary thing to think about having a problem in your brain/spinal cord area!

I wish I could offer up some questions to ask your doctor. Do some research! I personally like http://www.conquerchiari.com. A bit difficult to navigate, but a wealth of links and other information. Feel free to PM me if you want, but I think I covered my whole story right here!

:typing

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Thank you for the reply. I found out in early June that I have Chiari I. I went to my neurologist for my annual checkup for migraines and confessed my new symptoms. He recommended accupressure. I didn't think that was a valid solution so went to see my PCP, who is fantastic. My PCP ordered the MRI in June that identified a 6mm herniation. He then referred me to a new neurologist.

At the end of July I took a nasty fall from my horse that left me with a severe concussion and a sprained neck. After I was well enough to travel I went to see the new neurologist. He ordered a new MRI and identified an 8 mm herniation.

Along with the headaches I have tinninitis (sp?) in both ears but mainly the right one, hearing loss in the right ear, loss of reflex in my right leg (knee and ankle), vertigo, dizziness, problems with speech, (sometimes I feel like I have cotton balls in my mouth when I try to speak) and the list goes on.

Sooooo, we'll see what the neurosurgeon has to offer up. I'm not too jazzed about surgery. I would expect that to be a very last resort.

I, like you have scoured the net and have read so much about the disease. I should be able to come up with my own set of questions. I'll figure it out. Thanks again for your post. It's nice to be able to share with a fellow "chiarian"

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:heartbeat

It's also nice to see someone close to my age. Even when I was first diagnosed as a teenager, anyone else that was a Chiari patient was either under 5 or over 50. At least now it's a better-known condition in the medical world - I went through too many psych evals for my symptoms before I had a real diagnosis.

I cannot fathom having the severity of symptoms you currently do. I hope your new doc can help you find relief and that it will be a smooth road for you.

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I was diagnosed at age 40. It tool me approx a year after I was diagnosed

before I decided to have the surgery. Deciding to have or not have the

surgery is a hard decision. In my case the surgery basically gave me my

life back.

I wanted give you my support.

I hope everything goes well for you.

Sandy

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