Oscillopsia?? Please advise!

[St. Louis Leaker]

Hello,

I had a spinal tap 5 months ago and since then I have had buzzing and hissing in both ears (even when lying down), hyperaccusis (even when lying down), oscillopsia when I walk or chew and vision that is just always "off". I also feel "drunk" in the head most of the time.

Has anyone else experienced this - especially the eye and "drunk" feeling issues? I am so depressed over this, I fear is will never go away, it has been 5 months. I did have the headache upon standing for the first week but no headache since. And I've even had 1 blood patch which made no difference. I'm terrified this is permanent damage. Brain MRI is normal, nothing drooping they said.

Please help!!

[LauraL840]

What did they do a spinal tap for?

Are the hearing/vision symptoms the only symptoms you are experiencing?

What does your neuro say?

[St. Louis Leaker]

I finally agreed to a spinal tap after 14+ years of on and off papilledema (one eye at a time) which would occur every 3 or 4 years, ironically one time was after I had a TB test and than again shortly after receiving a vaccine on another occassion. They were checking for MS and a few other things (all negative, spinal fluid normal).

Nerve pain that comes and goes in hands is my only other symptom.

The neuro who did the tests does not have an answer. Pretty much looks at me like I'm nuts because I have no headache.

I know I am preaching to the choir here when I say this but this is pure hell, I would not wish this on anyone and wish so badly I had not ever agreed to the test. I have to try very hard not to break down at least once a day because of it.

[LauraL840]

I don't really know what to say! I completely understand your frustration at not having answers and the stress that comes with being in that place.

Unfortunately your symptoms aren't really the hallmark symptoms seen with leaking from a dural puncture; although they were at one time. I've heard of people who, over time, their headache loses the orthostatic feature, but I can't recall of ever hearing of someone with a dural puncture leak with NO headache!

I suppose you could be a first, but since you had a blood patch and it made no difference in your remaining symptoms, that would be considered another 'negative' piece of evidence for leaking CSF.

Have you had a second opinion? If you can get a second opinion, since your symptoms are largely auditory and visual, you might consider seeing a neurotologist or a neuro-opthomologist. The one eye at a time papilledema would be pretty concerning, especially since it comes and goes! I suppose you didn't get an answer to THAT either?! :rolleyes: Do you know if your opening pressure was documented, and if so what it was?

[LauraL840]

I just thought of a site that has GREAT information regarding vestibular issues (which include hyperacusis and oscillopsia). It's called Dizziness and Balance (http://www.dizziness-and-balance.com/index.html).

[Robbysmom5]

Did your LP include a pressure reading? (am wondering if you were high then?)

Have you had an MRI w/ contrast & myelographic sequencing done at the site of your LP? (it does not require an LP) Sometimes this can show a leak.

Sorry this is so frustrating.

[St. Louis Leaker]

Thanks for both the replies. I have seen a neuro-otologist and he says there is a possibility of a fistula (SCD) being blown out due to the pressure change when the dura was punctured (so basically it would be like a traumatic brain injury I guess). But unfortunately, CT scans aren't picking a tear up. And to do an exploratory craniotomy is not something I'm willing to do since we aren't certain that's what happened, neither is the doctor at this point.

Unfortunately, and this REALLY burns me up, a pressure reading was not taken. If only I'd known then what I know now. A history of papilledema should have prompted a pressure reading but there was none taken.

Thank you for the suggestion about MRI w/ contrast & myelographic sequencing done at the site of the LP, I have not had that done and did not realize there was a way to possibly show a leak without creating another which I'm terrified to do at this point. Just curious...where does the contrastgo or how can it show a leak?

[LauraL840]

You know, without the headache component and the negative response to the blood patch, I think I'd see if the neuro-otologist can do more testing to rule in/out SCD. I certainly wouldn't be opting for any 'exploratory' craniotomies, but I'm pretty sure there are several tests for SCD that are non-invasive!

The thing with CT scans is that they have to get JUST the right angle and slice to get something as small as the kind of tear your talking about! I would imagine that it might take several scan, but then that's cost-prohibitive!

[mimsy360]

BrainTalk Post#1

Hi everybody! St. Louis Leaker's symptoms caught my attention enough that I decided to buckle-up and join. : )

Laura, thanks for the fabulous site referral under dizziness and balance! Much to think on. (Much to comprehend, actually) Good to know they are there for consultation
if needed. Hopefully things will turn around and it won't actually be needed. Mims : )

[Robbysmom5]

Thank you for the suggestion about MRI w/ contrast & myelographic sequencing done at the site of the LP, I have not had that done and did not realize there was a way to possibly show a leak without creating another which I'm terrified to do at this point. Just curious...where does the contrastgo or how can it show a leak?
The contrast would go into a vein. I believe it could show a leak by imaging CSF outside of the dura. (please note that people w/ leaks have had normal results though) I would imagine that very small slices are needed. I have not seen the results of one of these myself. Unfortunately my son's first nsg said something like 'all MRIs are done w/ T2 myelographic sequencing' .. this was not true. After my son was repaired, we did find a nsg (at NYP) that said if Rob continued to have headaches he wanted to do this test - I wished I found that doctor 8 months sooner!

[punctured]

Unfortunately your symptoms aren't really the hallmark symptoms seen with leaking...

"Unfortunately" should be "Fortunately". No one wants to see you leak.

And assumed low grade leaks seem to be difficult to treat. Same thing for controversial diagnoses (perilymph fistula etc). They are controversial for a reason (that surgical results are poorly documented).

I'll cross my fingers that the problem will just go away by itself and that there's nothing serious wrong.

Unfortunately, really, there are many of us in that boat, miserable and chasing the rare and treatable causes. Better hope for something simple (low grade infection or whatever).

Good luck,

P.

[St. Louis Leaker]

Thank you for all of your feedback. I'm thrilled I've found a place where others automatically "get it" but hate that the only reason you do is because you too are suffering or have been.

I'm going to push for another ct scan and see about some sort of imaging of my lumbar spine, I really don't know what else to do.