Nystagmus

[Omaschwannoma]

So sorry to hear you're going through so much.  It's so frustrating when you can't get a straight--or correct--answer.  The comment that the doctor made about stress being the cause of your problems really hit home.  Several--make that MANY-- years before my AN diagnosis, my then-doctor told me that the fullness in my head, the dizziness, the loopy feeling, palpitations, etc., were psychological and stress-related.  He said I should talk to someone about my problems.  Yes, doctor, a psychiatrist will cure that brain tumor.  I really think he thought I was a bored housewife, looking for attention.  As it turned out, my next doctor ran cardio tests and determined the palpitations were caused by mitral valve prolapse, which the first doctor suffers from, yet didn't recognize the symptoms!!!   And the only reason I know that is because the second doctor told me!!!  Once I had a diagnosis for the palpitations and dizziness, or so I thought, I stopped looking for an answer.  Doctor thought all was related to MVP, which I accepted.  Both of those doctors are out of the picture completely now.  Neither of them thought to run an MRI, despite all the symptoms that originated in my head, not my imagination.  When the off-balance feeling went into high gear two years ago, my next doctor, a young female, initially thought I had an inner ear infection.  But she told me to return to her in a month if symptoms didn't improve.  Next stop:  MRI, which revealed AN.

As for the nystagmus, I notice my left (surgery side) eye seems to be getting worse.  I can't focus on things at a distance.  Sometimes I can't even tell which kid is mine on the basketball court when they're running around.  Watching TV from across the room is annoying.  The double vision to the left side is still a problem.  And it exhausts me.
I was relieved to hear you mention the "moving field of vision".  My family doesn't know what I'm talking about when I describe that.
I have not had a formal diagnosis of nystagmus, and I don't know if I should pursue it.  What are they doing for your nystagmus?
I notice that things get worse when I'm tired or when I've been at the computer for a long time.
I hope you get some relief.

I smiled reading your pre-tumor accounts of doctors as I too had many years of mis-diagnosis and oddly enough I too suffered with shortness of breath, saw Cardiologist and had stress test showing wierd heart rhytm but not uncommon and nothing to worry about.  Had anaphylactic type reactions from time to time, chemical sensitivities and stopped wearing perfume a few years before surgery, and near the end food related allergy symptoms, at times, rushed to ER as my throat was closing up only to be sent home with diagnosis of "anxiety" attack--sigh.  I even had event during an outpatient surgery to open the drainage hole in my left sinus with a laser.  I distinctly remember waking up "In my throat as I could see the cartilage rings" thrashing about and screaming I couldn't breathe.  The next thing I remember waking up in recovery to severe burning and itching all over.  They injected benedryl and all was better.  At the follow-up visit this surgeon never addressed what had happened until I stopped him short from leaving his office.  His explanation was..."Better have a doctor who knows what he's doing if I ever have to have surgery!"  What kind of answer is that! 

Anyway, I am carrying on....as for the nystagmus treatment I was sent back to my PT for more vestibular rehab only to be sent home stating there is nothing more she can do, this is it for you.  I accept this and my doggie walks of 30 minutes are all I can handle and this is fine. 

[WHWT]

We share quite a few things......
On the morning of my AN surgery, when they were prepping me for the main event, they gave me penicillin. First, I was asked if I had any allergies.  None, to my knowledge.  Then the itching and swelling began.  Lips, tongue, hands, arms, legs.....  Ooops.  Guess I'm allergic to SOMETHING.  My poor husband looked terrified.  What would we do without Benadryl?  It knocked me out for a while, which was a good thing.  Wish I was still out when they wheeled me into the OR......

[jjohnson]

I too have some nystagmus issues from surgery.  My issue was that when they were removing the tumor, the 6th cranial nerve was "bruised" and this causes my eye to wander to the left.  The 6th nerve helps control lateral movement of the eye.   Hurts slightly when I turn my head right as my eye tries to stay left.  It's improved but still has a tendency to wander if I don't concentrate. Hope this helps.

[WHWT]

Thanks for your comments.  I hope things continue to improve for you.
My surgeon didn't mention bruising any nerves.  But that would explain the nystagmus. When I described my vision issues, no one seemed too concerned.