New diagnosis

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New diagnosis

Postby KLGates » Mon Apr 04, 2011 4:00 pm

Hello all, just got my diagnosis today, seems like I have a mild case (whatever that is) accidentally discovered from an MRI I had last week because of headaches.

The problems came on quite suddenly in December. Constant nausea and headaches and tons of new "floaters" in eye. Headaches nonstop - not very bad ones mind you but every now and then spiking. Now weird popping noises in neck and dizziness.

My GP suggested a neurosurgeon to look into it and decide on surgery or no, but I'm looking for recommendations from you all. I am in Westchester NY. Anyone know Dr. Bennie Chiles?

Thanks for your help.
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Re: New diagnosis

Postby steph81 » Mon Apr 04, 2011 7:43 pm

HI,

I also have cm. I now live in putnam county, but grew up in Westchester. I have heard of him, but don't know much about him. I have consulted with Dr. Winfree at New York Presbyterian. He was very informed about cm, and I felt comfortable. With what we have there are many neurologists, and neurosurgeons that do not have any idea about chiari. You should probably get a full spine mri to rule out syringolmyelia. Sometimes this can be associated with cm. There is Dr. Kornel. I have heard good things about him, but don't know if he is really a expert on chiari. Feel free to pm me if you have any questions.

Steph
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Re: New diagnosis

Postby KLGates » Tue Apr 05, 2011 6:06 am

Thank you Steph for answering so quickly.
Considering The Chiari Institute in Great Neck. No one seems to take my insurance anyway so why not go the full monte so to speak?
Is there a list somewhere of neurologists/neurosurgeons who are considered "experts" on this?

--kg
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Re: New diagnosis

Postby steph81 » Tue Apr 05, 2011 12:35 pm

If you post "Neurosurgeons that specialize in chiari NY" Razzle will give you a list. The chiari institute is supposed to be good. It does take awhile to get a appointment. let me know if you have any other questions. I know this is all a lot to take in, and can be scary.

Steph
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Re: New diagnosis

Postby KLGates » Tue Apr 05, 2011 12:49 pm

Hi, I have so many questions now that I'm looking into this.
I'm 46 years old female, with chronic low blood pressure.
My GP says it was just chance that the MRI found this and it probably doesn't have anything to do with my neck pain, 24-hour migraines, tingling extremities, floaters, nausea, dizziness, etc. Seems hard to believe they're not connected!

What brings on an incident? What prevents an incident?
Peri-menopause?
Are there certain drugs that make it worse?
Certain diet or emotional states that make it worse?

What kind of signs indicate that the situation is urgent?
Does it always get worse or are there "flare-ups" and then it gets better again?

A lot to ask but I have a lot of questions!
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Re: New diagnosis

Postby steph81 » Tue Apr 05, 2011 1:00 pm

Chiari is probably the culprit for those symptoms you listed. Like I said before it can be very frustrating becuse Dr's don't have any education about chiari. I suffered for almost 6 years before I was diagnosed. The Dr thought it was my lyme disease. Symptoms can come and go. For me some days are good and some are bad. Stress in your life doesn't help, but its not good for anybody. You need to see an expert. There is also something called a cine flow study. This is a test to see if there is blockage of the spinal fluid. I know its very overwhelming.
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Re: New diagnosis

Postby steph81 » Tue Apr 05, 2011 1:05 pm

Also make sure you get all the copies of your mri's. You will need these to bring with you. How big is your herniation??
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Re: New diagnosis

Postby Kate456 » Tue Apr 05, 2011 1:07 pm

Hi KL,

I just sent you a PM with some more information!
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Re: New diagnosis

Postby KLGates » Tue Apr 05, 2011 1:39 pm

Hi Steph, the MRI report I have doesn't even say how much herniation.

Saggital T1 FLAIR, axial T1 FLAIR, PD FLAIR, and FSE T2, coronal GRE, DWI.

It says, "The cerebellar tonsils are peg shaped and extend below the level of the foramen magnum compatible with Chiari Type I malformation. There is no syringomyelia."

Again my GP said it's probably not even the cause of my headaches... but you know, one DOES want to make sense of it all...
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Re: New diagnosis

Postby steph81 » Thu Apr 07, 2011 8:02 am

Hi,
You need someone to interpret the mri for you. They usually draw a line, and what's below that line is the mm it is herniated. A test called a cine flow study can be helpful because it shows if the herniation is blocking the flow of the spinal fluid. When the flow is blocked this can cause your symptoms. Sometimes you can have chiari, but there is still flow.

Steph
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Re: New diagnosis

Postby razzle » Fri Apr 08, 2011 6:47 am

these are patient recommended drs Columbia-Presbyterian Medical Center
Dr. Guy M. McKhann

710 West 168 Street
New York, New York 10032
(212) 305-0052
gm317@columbia.edu

Dr. Neil A. Feldstein
Pediatric Neurosurgeon
Columbia-Presbyterian
Medical Center
New York City

*Dr. Paolo Bolognese
865 Northern Boulevard
Great Neck, NY 11021
Phone: (516) 570-4400



Dr. Vallo Benjamin
NYU Medical Center
530 First Avenue, Neurosurgery,
New York, NY, 10016
(212) 263-5013

Dr. Deborah Friedman
Neuro-opthalmologist
475 Irving Avenue
Syracuse
(ph) 315.464.3937

Dr. Charles Hodge
University Hospital,
Syracuse, NY 13204

Scialabba, Fred P MD
North Country Neurosurgical (518) 793-8160 454 Glen St # 2
Glens Falls, NY 12801
Dr. Nancy Havernick
Pediatric Neurologist
5850 Heritage Landing Dr.
East Syracuse
(ph) 315.446.2985

Dr. Jeffrey Wisoff
Neurosurgeon
New York University Medical Center
New York City
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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