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-   -   Help in describing dizziness to drs (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/250739-help-describing-dizziness-drs.html)

Mark in Idaho 03-02-2018 03:52 PM

Some have benefited from Epley Maneuver therapy to reorient the crystals. Most PTs and Vestibular Therapists can do it.

There is a rare disorder that can impact the inner ear. I think RussiaRulez has posted about his experience with it. Maybe his posts can be found in a search.

What is the Stanford consult about? UCSF has a very good concussion clinic, too.

I have had mild nystagmus in my left eye for decades. My doc would not do a VNG.

Magpie76 03-02-2018 08:30 PM

The Stanford appt is with their neurology team, although I'm unsure who exactly. Sounds like it would be starting from scratch going through the process to see if they come up with a more nuanced diagnosis. Moving forward would have been a no-brainer until today getting this VNG and positive nystagmus outcome.

Maggie

Quote:

Originally Posted by Mark in Idaho (Post 1259668)
Some have benefited from Epley Maneuver therapy to reorient the crystals. Most PTs and Vestibular Therapists can do it.

There is a rare disorder that can impact the inner ear. I think RussiaRulez has posted about his experience with it. Maybe his posts can be found in a search.

What is the Stanford consult about? UCSF has a very good concussion clinic, too.

I have had mild nystagmus in my left eye for decades. My doc would not do a VNG.


Mark in Idaho 03-02-2018 09:31 PM

Why does the positive nystagmus diagnosis concern you so much? It is an indicator, not a sentence. It could just indicate that you need to recover more. You already know that.

As I said, I have had mild nystagmus for decades.

Functional neurologists/chiro neuros use nystagmus as part of their diagnostic protocol.

Hopefully, the Standford appointment is in their Concussion and Brain Performance Center.

TomAce994 03-02-2018 09:54 PM

Maggie,

Assuming it's affordable, I personally would go see the Stanford team if I were in your shoes. This is something you want as clearcut a diagnosis as possible so that you don't waste time in recovery. They could very well tell you the exact same thing, but at least you'll be even more confident in that case.

Just my two cents.

Magpie76 03-02-2018 11:57 PM

Quote:

Originally Posted by Mark in Idaho (Post 1259684)
Why does the positive nystagmus diagnosis concern you so much? It is an indicator, not a sentence. It could just indicate that you need to recover more. You already know that.

As I said, I have had mild nystagmus for decades.

Functional neurologists/chiro neuros use nystagmus as part of their diagnostic protocol.

Hopefully, the Standford appointment is in their Concussion and Brain Performance Center.

What I meant was that since we have this potential path to explore here in town with the vertigo as the cause of the dizziness, is it still worth making the haul to Stanford to start from scratch in tandem. Does that make sense?

Magpie76 03-02-2018 11:58 PM

Quote:

Originally Posted by TomAce994 (Post 1259686)
Maggie,

Assuming it's affordable, I personally would go see the Stanford team if I were in your shoes. This is something you want as clearcut a diagnosis as possible so that you don't waste time in recovery. They could very well tell you the exact same thing, but at least you'll be even more confident in that case.

Just my two cents.

Thank you Tom - yes, I'm inclined to do so. Appreciate the .02!

Mark in Idaho 03-03-2018 01:54 AM

If you go to Stanford, try to not get your hopes up. We have had plenty here who went to a top tier facility only to be let down by the lack of care they received. It just depends on the doctors and the days and the intake protocol.

You should consider whether the 90 minute ride will make you so you are fatigued and not as strong in your communication ability. Trying to get a later appointment so you can take a break before your appointment may be worthwhile unless they have a multidisciplinary diagnostic protocol.

I tried to get my wife seen there (a very rare cancer) but they had a drawn out protocol of less specialized doctors before allowing her to be seen by the specialist. We went to UC Davis instead and got excellent care.


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