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Doctor in Phoenix metro? Please help me.

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Unread 10-23-2012, 12:36 AM   #1
A.ee
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Default Doctor in Phoenix metro? Please help me.

Hi, I live in Phoenix, AZ. I really need help understanding this and finding a doctor.

My cerebullar tonsils hang 4 mm, so I believe this is CM1?. As crazy as this sounds, I was actually happy to put a name on what I'm experiencing. I unfortunately had no idea the uphill battle of finding a good doctor.

Today went to a neurologist, who told me "there is no such thing, it's nothing" in regards to Chiari Malformations, and further commented that I'm "an anxious person is all," regarding my arm numbness, lack of concentration, etc. I cannot explain how much my head hurts. I feel as though I'm starting to get depressed, I feel as though there is no hope. I'm 35. I shouldn't feel this way, but I do. I need help, anything, in finding someone who will treat this.

Does anyone live in Phoenix or in AZ and can you provide your drs name? If not, what kind of dr. treats you? I talked to a dr today, but also said he bills patients directly and does not accept insurance of any kind. his first session is $560. I cannot afford this. Is this typical?
Should I attempt a neurosurgeon, or is that too high of a specialist?
Does anyone know of a list of providers (note: I found some lists per 2011, but I've called and the drs are retired, no longer treating CM, etc)?

I should also add, I called Mayo to find out if they are accepting new patients, but their first available is Feb 2013. God help me if I'm not feeling better by then, I can't wait this long.
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Unread 10-23-2012, 11:17 AM   #2
pabb
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Quote:
Originally Posted by A.ee View Post
Hi, I live in Phoenix, AZ. I really need help understanding this and finding a doctor.

My cerebullar tonsils hang 4 mm, so I believe this is CM1?. As crazy as this sounds, I was actually happy to put a name on what I'm experiencing. I unfortunately had no idea the uphill battle of finding a good doctor.

Today went to a neurologist, who told me "there is no such thing, it's nothing" in regards to Chiari Malformations, and further commented that I'm "an anxious person is all," regarding my arm numbness, lack of concentration, etc. I cannot explain how much my head hurts. I feel as though I'm starting to get depressed, I feel as though there is no hope. I'm 35. I shouldn't feel this way, but I do. I need help, anything, in finding someone who will treat this.

Does anyone live in Phoenix or in AZ and can you provide your drs name? If not, what kind of dr. treats you? I talked to a dr today, but also said he bills patients directly and does not accept insurance of any kind. his first session is $560. I cannot afford this. Is this typical?
Should I attempt a neurosurgeon, or is that too high of a specialist?
Does anyone know of a list of providers (note: I found some lists per 2011, but I've called and the drs are retired, no longer treating CM, etc)?

I should also add, I called Mayo to find out if they are accepting new patients, but their first available is Feb 2013. God help me if I'm not feeling better by then, I can't wait this long.
http://en.wikipedia.org/wiki/Arnold%...i_malformation
you may want to find a "better" source then Wiki, but, your first doc is an ****. A neurosurgeon is the spec. that you need to see. The degree of herniation is not the only factor, you need to know the degree of occlusion, ie, how CSF is circulating. I think the only medical management I have heard of is trying diamox....now you know all I know about Chiari! Good luck
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Unread 10-23-2012, 12:45 PM   #3
hlwampler
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You need to find a new doc ASAP. My NS is the chief of the neurosugrial department at the hospital I work at...he had my surgery scheduled and set within 3 weeks of our first appointment.

Chiari is a very real thing that makes life very difficult. I suffered for YEARS before my PCP sent me for my just in case MRI. She didn't even think it was smart/a good idea to even see a neurosurgeon. She recommended against surgery.

If I hadn't had the surgery, I would have had a stroke by now. And I'm only 27. My NS said it was damn lucky I saw him and got under the knife when I did.

Get to a neurosurgeon. Have them look at your scans. If they say the same thing, keep going until you find a doctor who takes Chiari seriously.
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Unread 10-24-2012, 05:21 PM   #4
briars
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I am in Phx and my daughter was just diagnosed and they want to preform surgery. Have you contacted Barrows? They are the best you have in the Valley. Good luck!
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Unread 02-13-2013, 07:59 PM   #5
4evrblnd
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Help Dr. in Phoenix area

Just saw your message, have you found a dr. yet? Have lived in the Valley for many yrs. had four neurosurgeries @ Barrow but this was over a 26 yr. time frame and different surgeons. Really a specialized facility, but there are other brilliant drs. in the area if your insurance is not accepted there.

As the good surgeons say, each patient is different, thus has a different outcome.
Have been busy for awhile, am back with 26 yrs. experience??!@what
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