What should I do?
 

So I saw a neuro otologist who diagnosed me with inner ear damage and explained I needed to learn exercises to compensate my dizziness and vision problems. The exercises make me sick and give terrible head pain.

I saw a spinal surgeon who said I do not need any operation but she feels my symptoms are that of TIA's. So has referred me to a neurologist again for an MRI with dye to check my arteries and any existence of clots.

I have collapsed 6 times in 3 weeks. When it happens I am unable to speak for between 15 and 90 minutes. I also have to sleep immediately. My sight becomes blurred and I cannot respond to anything even though I can hear.

I read the notes the spinal surgeon made and was angry to see the words : "This patient is displaying very unusual symptoms but a deep psychological exam explained all these as symptoms of stress and depression".

The deep exam she refers to was a questionnaire I was asked to submit 2 mins before seeing her!!

So if so called pro's know nothing about PCS and TBI what hope is there of help??

Oh no, Peachy. That sounds horrible. Those questionnaires are so annoying - yes of COURSE I feel stressed, of course I feel anxious, of course I am not sleeping normally. Dr's can be very quick to pull them out and overlook the underlying issues.

I don't know what to say except wait to see what the neuro says, if you haven't already? It's horrible waiting for the opinion but there's nothing you can do about it in the meantime. Are you on the NHS? How long have you to wait?

I hope you have lots of support and help around you, especially when you are collapsing like you are. Have you considered a medic alert bracelet?

Please do not stress out over the dismissive spinal surgeon.
 

peacheysncream wrote: I read the notes the spinal surgeon made and was angry to see the words : "This patient is displaying very unusual symptoms but a deep psychological exam explained all these as symptoms of stress and depression".

The deep exam she refers to was a questionnaire I was asked to submit 2 mins before seeing her!!

So if so called pros know nothing about PCS and TBI what hope is there of help??
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How unfortunate an experience for you peacheysncream, with the dismissive note by the spinal surgeon.
Fortunately for you that she in fact did not find anything that would have indicated an opportunity for surgery! :p

"What hope is there of help??" --- Perhaps like many here, you may find that our own good conscientious selfcare is often our best hope of help over time. If otherwise, I hope that you will find the capable, competent, truly helpful professionals consults. It's such a hit-&-miss business, finding the right medical care consultants.

My neurologist whom I saw ~3 weeks post-collision, was of typical no-help; and wrote a similar disregarding "observation note" that was in my case not only untrue, but as well harmful.
Because I was at the time of the appt. both scared & frightened by what I was experiencing, and afraid for "how long" I might yet remain "dysoperational" in regard to being capable to do a highly-demanding job which I loved --- he made a ridiculous note to the effect of: "Patient seems highly-focused on disability." :confused:

Idiot.

Thanks to Klaus whom pointed to some links on TBI and vision problems - I found Visual Midline Shift syndrome which could explain my blurred vision, tracking problems, balance and a rather strange forward lean.

When I asked a retired Neuro guy about this, I was told to stop trying to find out what was wrong with me and leave it to the professionals. I explained that I haven't been examined yet and not likely to be for another 6 months - who else was going to get me better - he was not swayed

So sorry for your bad Dr. visit. I had similar where nuero made note that I was obsessed with worst case scenarios of return to work. I work on LARGE powerful manufacturing equipment. My concern was with making a mistake that caused someone else to be hurt.

Modern medicine does not do well if you don't have an obvious traumatic injury or disease. Since Mtbi or concussion is neither I guess we must be strong self advocates.

A neurosurgeon is not usually very good with symptoms that do not require surgery. Good you don't need surgery. I would not trust this surgeon.

When you have these collapse episodes, have you tried to be examined at the E&A or whatever you Brits call it while you still can't speak? It might be best to be seen while you are symptomatic. Write a note for your wallet about this situation and figure a way to communicate that you need an ambulance to get to the E&A.

I had my second collapse on Sunday morning after one last spring. I was walking out of the bedroom and went down and hit the back of my head into a hollow core door. My wife found me on the floor in a fetal position.

Not knowing the cause can be troubling.

Hi Mark,
Thank you. (In England we call the ER : - A and E for accident and emergency).
So sorry you had another collapse. I was put in the ambulance but you can see on their faces that they did not believe that I couldn't talk. They took my blood sugar and said it was low considering I had eaten an hour before and they believed my collapse was purely to do with that.

So I face people regularly including friends and family who think I fake my problems.

Mark wrote: "I had my second collapse on Sunday morning after one last spring. I was walking out of the bedroom and went down and hit the back of my head into a hollow core door. My wife found me on the floor in a fetal position.

Not knowing the cause can be troubling."
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Mark,

It is sad to hear of your recent experience with collapse.
I do hope that you are not experiencing anything of TIAs (transient ischemic attack). Do you have any sense of the cause?

At any rate, thinking of you and hoping for you a return very soon to a state of usual equilibrium and no more collapse attacks.

For me, living alone, such an experience would be terrifying for me.
And on the humorous side (yet quite seriously) --- it could be days before anyone would check-in on me or find me here in my hideaway by the bay! :confused:

Wishing you all well & good,
Theta

Theta, *concerned face* I insist you put a neighbour in charge of checking on you if anything seems unusual or you disappear for a while..!! I can't imagine the boards without you.

Thank you, andromeda,

You are a dear. Thank you for your kindness. And yes, thank you for the reminder. :o

Actually my best friend & neighbor, also widowed, lives just a mile up the Bay from me here.
We've been touching base with one another at least every other day for a couple years now.
We each have keys to one another's home.
Neither of us are either "infirm or feeble", thus tend to be active outdoors a lot when the seasons here allow.
So it is sometimes easy to assume that the other is simply busy --- or can't locate our cellphone! :o --- & hasn't been able to return a phone call for a day.

You serve as a reminder that we need to set up some daily check-in/report-in system.

Thank you again, Dear!

Theta