What was thought to be MAV turned out not to be

Hello I haven’t been on here for a long time because what I have been told is I have MAV and now to be known I don’t. Here come’s my story maybe it will help others struggeling like I did.

I have had dizziness, and headaches on and off for the last 2 1/2 years I have seen tons and tons of doctors some didn’t know what to do with me and others said I have MAV, everything I did tests meds took to treat MAV was not working. Another Dr. I saw suggested that I see Dr. Glen Zielinski a Neurologist/Chiro Dr. I’ve been seeing him for less then a year now and what do you know I have a Cerebellum issue. My left side cerebellum isn’t keeping up with the right side, which is causing my eyes not to be able to track right, have dizziness and headaches and causing my balance to be off. He has me doing exercises and also blood tests that no other doctors ordered and what do you know, I have a autoimmunity. Now like I said for 2 1/2 years I’ve gone everywhere and haven’t given up and he has been the best Dr. who’s finding out what is going on. Hopefully this will help others with dizziness as well because it’s a life changing illness never give up if you have doubts.

Thanks

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I have a Cerebellum issue. My left side cerebellum isn’t keeping up with the right side, which is causing my eyes not to be able to track right, have dizziness and headaches and causing my balance to be off.

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Hi there,

What tests have been run on you to come to this conclusion? How does the neurologist/chiro know the left side isn’t keeping up with the right? How can this specialist be both a neurologist and a chiropractor? The latter is one I’d be extremely wary of. Chiropracy is mostly nonsense and useful at best for lower back pain at best according to the evidence.

What blood tests has he run and how has he concluded you also have an autoimmunity problem?

S

Hello,

The tests I had done in his office was a VNG and balance test. The tests I had before that at other clinics were MRI’s, CT, Lumbar Puncture, Basic lab tests all came back neg

The blood tests I had done was with cyrex labs it’s called array 5 there were tons of test’s done.

Dr. Zielinski is a DC, DACNB, FACFN Board certified chiropractic neurologist of functional neurology.

I have seen 5 different Neurologist before seeing him and got nowhere with them. He specializes in dizziness

I’d never heard of “functional neurology” before. I’d be EXTREMELY skeptical of any “field” that purports to treat the huge number and range of disorders listed on this guy’s site. If you’re willing to pay (or if your insurance pays–which I’m curious about), and want to spend the time and effort, that’s up to you, of course, and I wish you luck. Chiropractors and other alternative-type practitioners may have the most beneficial effect on people mainly by dint of spending more time with them than mainstream doctors can, but alarm bells should really go off when someone says they can treat that huge long list of conditions!

And clearly, they want you to come back for lots of appointments and lots of tests. It’s going to cost you or your insurance a bundle, I’m sure. But I sincerely hope you get some good out of it.

Best wishes,
Nancy

I"m in Oregon as well and was referred to a Chiropractic Neurologist. Nothing came of it. A total of 6hrs was spent in 2 appt’s.
He sure did give it his all, both appt’s seriously 3 hrs face to face. Other doc’s in the area say the CN’s are quacks. Who knows.

— Begin quote from “Kayera”

He sure did give it his all, both appt’s seriously 3 hrs face to face. Other doc’s in the area say the CN’s are quacks.

— End quote

And this is how it works. Very well known that when a practitioner spends a lot of time with a patient no matter what the condition, they just feel better when they walk out the door. All part of the placebo effect. I’ve felt it myself … you have some professional listen to the sob story of the moment and you walk out feeling like something has been resolved (though not always I know).

ahepler221 – I’d seriously ditch anything with chiro attached to it and see a real neurologist who specialises in migraine for another opinion – someone who can review your meds and get you onto something that will work. You certainly seem to fit the migraine story but need a professional to look at the whole picture.

Cheers

I hadn’t heard of ‘functional neurology’ before either. Turns out it’s quackery. Chiropractic quackery to be precise.

rationalwiki.org/wiki/Functional_neurology

The link above is comprehensive but also (pleasingly) quite funny.

In regards to Dr Zielinksi’s qualifications, he is an assistant professor at the Carrick Institute for Graduate Studies. Carrick is a Dutch chiropractor who ‘invented’ functional neurology. It’s not actual neurology as any neurologist or in fact any doctor or any scientist would define it. Carrick just made up that term himself.

ahelper221 - you’ve described the tests and the new diagnosis but I’m interested to how you feel. If you feel better that’s great!

Before seeing Dr. Zielinski I could barley go for a walk that’s how bad my dizziness was. I’ve seen 6 Neurologist and Dr. Jeff Brown a Neurologist here in Oregon who was supposed to be the best dizziness Neurologist. ALl professional Neurologist had no clue what to do with me but to order MRI’s which all came back normal and put me on Topamax for headaches which did nothing for me. I have been through the wringer with all 7 Neurologist I’ve seen.

Since I’ve seen Dr. Zielinski and done the exercises my balance is so much better, my headaches are on and off maybe 4 headaches a month and the reason I was getting them in the first place is because my eyes arn’t tracking right which in return makes my neck go out causing headaches, no other professional Neurologist over the last 2 years was able to figure this out. I have had so much improvement since seeing Dr. Zielinski and am finally getting answer’s.

I only posted this to make suggestions not to get attacked. I have seen a lot of Neurologist and been through a lot of tests over the last 2 1/2 years was only posting this in hope to maybe help someone in my situation who’s ran out of options with Neurologist.

that’s great that you are feeling better! so do u think the key is the exercises? do u just do eye ones or what do u do? so are you able to walk more easily now? are you on any meds/did your dr. discuss this?

Ahepler,

I don’t think anyone is attacking you. Everyone who posted made clear that if it is working for you that is great. I think people were posting out of a genuine concern for your interests and making sure you were not being “taken advantage of.” Others who went to someone in the same practice space had poor outcomes and wanted to see that you had “eyes wide open.” It sounds like, for your situation, his treatment is working very well. There are many different paths to the desired outcome and it sounds like you are on yours.

Congrats.

I completely agree with what apace said. It’s also true, as Scott said, that just having a doctor spend a lot of time with you and try different things can have a placebo effect in itself. (Not a bad thing as long as you find things that you truly feel help you, for whatever reason.)

The science may be sketchy or at least not mainstream, but if the exercises are helping you, that’s great, keep at 'em… vestibular rehab, if it targets the patient’s particular vestibular weakness, can be very effective (although you need to have the migraines under good control for it to work effectively).

Perhaps also if you’ve changed your diet, you’ve eliminated some triggers? Just a guess. Also, if you’re feeling less stressed because you have a doctor you feel is helping you, that’s possibly one less trigger, too (stress).

If you are feeling better, that’s great. I hope the improvement lasts!

One thing I’m curious about, does your insurance cover the visits and tests to a chiropractic neurologist?

Take care,
Nancy

Hi,

I am interested in the part where you said he found an autoimmunity. Did he do the ANA blood test which showed up you had an autoimmune problem, then, if so, did he go on to do the specific tests to see “which” autoimmune problem you have. eg. antibodies to the thyroid?, or which other part of the body your immuns system was attacking?

Christine