Does anyone out there know of a good Neurologist in or near OK??
My wife's current neuro is, for lack of a better word, an idiot. My wife has chiari type 1 with 6mm herniation and she just got abnormal EEG results and her neuro refuses to explain why/how they are abnormal. The neuro won't even acknowledge my wife's symptoms. She sent her home with a prescription for migraine medication.... Migraines have never been a problem. We went to her because of pronounced neurological symptoms (numbness/tingling, impaired motor function, irritability, etc), not pain management.
We Need Help!! Please post if you have any suggestions.
Which migraiane medication? Many of them are also used to treat neuralgias and treat epileptiform paroxysmal activity (which is what is found on an EEG). An EEG is generally pretty non-specific there is not much to explain unless there are siezures. They can confirm if what is found on an MRI is causing symtoms.
Is this the same doc who DXd the chiari? BTW you might be surprised at what migraine may or may not do, it is NOT just painful headaches.
Hello there! Are you willing to drive to Denver (Aurora, CO). Dr. Oro is not only a neurosurgeon and neurologist but also a Chiari specialist. People come from other states to see him. http://chiaricare.com/
I understand your frustration. And if I briefly share my experience with neurologists may be you will understand why they are the way they are with us and why migraine medication is a must.
Chiari malformation is condition that can only be corrected surgically. Officially that is the only solution. If we choose to go to neurologist not neurosurgeon they do what they are trained to do, treat neurological conditions. It is even worse if Chiari is not diagnosed yet. Some people are treated for multiple sclerosis for years without knowing they have Chiari because neurologist would not order MRI. What does it say? They do not recognize symptoms of Chiari as symptoms of Chiari. They tell us IT IS NOT SYMPTOM OF CHIARI. I saw 3 neurologist last year. One from UCI Urvine medical center, supposed to be very good neurologist and she tried to persuade me that ALL MY HEADACHES are migraines. SOME are, some are not. Who did end up acknowledging I have symptoms of Chiari? Neurosurgeon did! A person who sees Chiari patients on a daily basis.
I think only neurologists that work in Chiari centers in collaboration with neurosurgeons are sure bet would respect the fact we do have Chiari headaches.
2. It does not matter if neurologist believes or not in Chiari caused headaches, nausea etc they can't treat them. Nobody can. Surgery might correct issue, might not. But, many of us DO develop migraines and that's what neurologist can help you with and that's what your neurologist seem to be doing. That's best they can do. DO NOT disregard this medication. I am taking topiramate daily (anti-seizure medication that is supposed to prevent migraines) and Sumatriptan for bad migraines. Sometimes after Chiari surgeries when Chiari headaches dissipate migraines still are there and need be treated by neurologist.
Chiari is complicated condition to manage and neurologists can only help with some of the headaches, after that their hands are tied and if symptoms are really bad surgery is an option.
Lastly, I read in some research that EEG was abnormal in some patients simply due to Chiari malformation.
You can find a lot of useful infor on conquechiari web.
I hesitate to wade into this but guess I will anyway. The pro surgical patient advocacy sites do a great job in many ways but at the same time do a huge disservice to patients and are terribly misleading. Sadly many of those myths were continued on this site until it was reviewed by a group of medical professionals. I understand many have a favorite surgeon and that the group of patients here is not fully representative of Chiari patients in general.
While it is true that the only way to partially reverse a chiari malformation is surgical, the harsh reality is that out of 100 patients with a Chiari only 20 will ever require surgery. Only 14 will be helped of the remaining 3 will stay the same and 3 will get worse. That doesn't mean I'm pro surgery or antisurgery. It means that out of 100 patients with Chiari 86 will only get relief and treatment from a neurologist not to mention the 14 will need followup by a neurologist.
While the only way to correct the malformation and possible future damage, the concept of chiari being best treated by surgical intervention simply is not true. There are many medical interventions and treatment for "chiari headaches" The chain of events leading to a "Chiari Headache" is as individual as the patient themselves.
The typical headache that occurs in Chiari I patients is occipital pain associated with valsalva maneuvers (coughing, sneezing, lifting, etc.) The main challenge is to differentiate between primary headaches such as migraines or tension pain, and headaches due to typical posterior fossa syndrome. Obtaining a detailed history is the most important factor that helps in obtaining the correct pain diagnosis.While “Chiari” headaches often resolve with surgery IF that is the only thing going on. They will frequently also get worse with surgery if its syrinx pain. “Chiari” headaches may coexist with migraine headaches, in which case unless the surgery may or may not be a reasonable trade off.
The ONLY medical professional with the experience and training to make the call is a neurologist. Keep in mind that Chiari is not a rare condition and that 86% of chiari patients will not get help from a surgeon.
A treatment trial with a triptan (there are many) generally will answer the question of whats next. Tha'ts what was proposed by the "idiot" neurologist. It is not only reasonable but generally required by the better surgeons with the higher sucess rates. All the MRIs whether CINE or not can't answer the question. there is only ONE way of knowing for certain whether headaches are caused by CSH flow issues (anything else is a guess) and that involves a very painful spinal puncture procedure.
Meant to add, although I have no personal experience as a patient with Jorge Gonzalez at neurological associates in Tulsa, the interactions I have had with him have been great. He works out of the box. His whole group is above average. I'd sure feel comfortable with a second opinion from there. There is a Headache clinic in Tulsa also. The primary doc there is very competent, but has been at it so long she looks past the patients. While a surgeon can be a jerk, it doesn't matter if he has good hands For a care physician you want it all personality, competence etc.
Just to be a wee bit oppositional there is actually pretty good evidence that intracranial hypertension causes an acquired Chiari rather than the other way around.... Its not uncommon with EDS in fact. (a good reason to avoid surgeons who work backwards anyway LOL) It usually is best diagnosed with a spinal tap - 250mm/H2O or above pressure.
Carbonic Anhydrase Inhibitors are used to treat it. I hesitate to point out they are used frequently to treat Migraine as well as chiari. aAcetazolamide (Diamox). Methazolamide (Neptazane),and furosemide (Lasix) and topiramate (Topamax). are most commonly used. If they suspect an Autoimmune Connective Tissue Disorders as opposed to a classic EDS confirmed by gene testing, they will often try an anti-depressant. Even if its idopatic IH, its not uncommon to start with tricyclic anti-depressants (amityiptyline,) beta-blockers and calcium-channel blockers because of the side effects of the Carbonic Anhydrase Inhibitors.
You of course want a doc who explains things as they go along..... But I wouldn't hesitate to comsider the Amitrptyline. Its nothing short of miraculous for some.
I'm not discussing the doc. Obviously the one you saw won't work out.Drr. google is far too often a quack. What tests are you looking for and what are your expectations? Normally folks don't show up at a docs doorstep with a list of symptoms if they don't want treatment.... so the statement "We're simply looking for the proper tests to see if drugs and/or surgery are in fact absolutely necessary" doesn't completley make sense to me. Tethered cord is rare in adults and is a differential diagnoses .A Syrinx if present would have been in the same MRI as the Chiari but at the end of the day it too is a differential diagnoses. The test for IH is extremly painful, and carries high risk. Most docs avoid a lumbar puncture if they can. Trying 20 dollars worth of pills is far more effective than a 3000.00 MRI in determining whats necessary. Unless a surgery is emergent, it is unethical to not try the least invasive (and lowest cost) alternatives first. Sadly most medical decisions are no longer made by physicians but are based on evidence based protocols.
As I said before what you need is a doctor who explains what is going on as he goes. The most important factors in neurology are not "tests" they are symptoms, patient reactions, and physical exam.
For example lets go back to your wife's abnormal EEG. It of itself means NOTHING unless there are symptoms lining up with where the irregularity showed up at it. 1 in 3 will have electrical abnormalities at some point. Its really where the term brain fart came from.
Above there is a list of how to prepare for an appointment. Adapt it to your situtation. Don't be afraid to interview your doc before deciding where to go. Give him your list of questions and your expectations. Otherwise he will follow his practice protocols which may or may not meet your expectations. There are enough of us here that can help you build a list if you want.
Just to follow up, I did not have a surgery personally. And my take on surgery, I would have it if my vision or other vital function is compromised. I have same size malformation and same symptoms DJ's describes his wife has. I live somewhere between LA and Orange County in So Ca and have PPO insurance. I have choice of Drs to go to and I tried big name medical centers. But like a said all I hear ranges from "we all have headaches" to "it is not symptom of Chiari". Things TJ's describes some neurologists can do sound wonderful but all I got is topiramate and Sumatriptan. Amitrptyline did not agree with me, I was very weak and woozy taking it. I had a rough year and had to start on medication. 21 through 34 I had symptoms but was tolerating them without any meds. I feel weak and sick most of the time, my brain looks tops on MRIs (except for malformation). And there we have it. Tests are OK, neurologist say I am OK, but I am not. I gave up. I will just suck it up and keep on going. That's just have to be my new OKAY.