Long standing, slowly worsening symptoms. I've had many diagnostic tests, Could it still be a tumor?

[cam94z28]

I have been having progressively worsening visual symptoms for years now.
It started off as only visual symptoms, limited to my left eye. Just before I went on Serzone for depression, they started to get worse. I would see flashes/streaks of light, ghosting, halo's around backlit objects, increased floaters, the odd inability to maintain focus when looking anyone in the eye. And not for nervous reasons. Over the last few years, the previous symptoms have evolved into new ones which follow.
Extreme sensitivity to moderately bright lights. Blue LED's for example will momentarily blind me even if only in the periphery of my vision. My left eye randomly and frequently has what i can only describe as a visual spasm. I don't feel anything in the movement muscles, but the visual/focus mechanism has a spasm. It will happen predictably when looking at something high contrast then looking away, but it also occurs just randomly in dim light or in constant lighting.  I also get the sensation of my heartbeat (visually) in my left eye. I also have even worse floaters that don't look like normal floaters at all. They are larger and shoot across my entire field of vision, causing me to follow them rather than what I'm looking at. There are also periods where everything seems way too bright to the point that it's overwhelming. Also, FWIW I've always had this object in my vision that looks like a bunch of translucent oval-shaped spinning cells. I have to look really hard to see it sometimes, but it's always there. No one could ever tell me what it was, and most of them look at me like I'm crazy when I try to explain it.

Recently I've developed non-visual symptoms as well. Along with the above "everything is bright" symptom, I have periods where everything is kind of surreal and I feel like I'm in a dream-like state. I also have frequent memory problems, even at work, where I will completely forget several things my manager asked me to do before I leave. Frequent headaches that start out in the sinus area, but move to what seems to be the center of my eardrums, and over to the top of my head. Primarily on the right side, but sometimes they move to the left. I am also usually very tired, even after sleeping 10-12 hours)

And the big one. Over the last 8 months or so I've developed numbness (more like tingling) anywhere from my lower left cheek over to my lower/upper chin. It's usually only in one of those areas at a time. It is intermittent. Waxes and wanes. I can remember days where I had no major tingling, and times where it lasted 3-4 days straight before any kind of relief. Sometimes it changes from a tingling to a mild pain. Sometimes my left eye will randomly twitch as well. I still have normal sensation. If I pinch, flick, or touch the area I still have feeling. When touching the area, it will sometimes diminish for a short time.

About 8 years ago I had a CT scan of the head, which came back normal. about 5-6 years ago (after worsening symptoms) I had a non contrast MRI of the Head, and an MRA of the Circle of Willis, and Corotid. Both normal.

I have seen a neuro-opthamologist for my symptoms several times, and he blames serzone that I used to be on, and can't find anything physically or neurologically wrong. He is the one that issued (with my coercion) the last battery of MRI's.

Anyway, that's my story. Do you think I could possibly still have an undiagnosed brain tumor? Is it possible the above scans, in the common areas they check would have missed a certain type of tumor elsewhere? What other issues could cause symptoms that presented as mine?

I am about to go back to my neuro-optho, and I guess what I'd like to ask is this. If his exam is unremarkable again, what MRI tests should I ask for. I believe there is a 3T MRI (previous scans were 0.2T) now in my area, so whatever tests they do should be accurate, even without contrast.

[rumpled]

Update us when you have the testing completed!

[rosehorse]

This is a pretty old post but fwiw for anyone who stumbles here, I have had a bunch of similar symptoms and my neurologist thinks it's most likely a migraine variant. I have right eye focus spasm especially associated with motion (driving, walking), difficulty focusing after a change of light conditions in right eye, constant right eye ache, associated nausea (motion sickness?), tingling across my head, one side or the other, numb patches on my face, and my right eyelid won't stop twitching, as well as many of the symptoms of confusion, dizziness, memory and mild but noticeable (to me) speaking difficulty (slurring and stutter) - all intermittent.  I have some really good days where I have none of it except the head tingling, but for weeks now the eye has been a continuous symptom pretty much.  My neurologist has sent me for tests just to check it isn't related to the few small abnormal hyperintensities found in my brain on MRI because it can also be to do with brain lesions (which as I understand it my hyperintensities could be) which have various causes (worrying for me because a first degree relative has MS and i'm in the age group/gender most common for initial onset of MS as well as having an existing auto-immune disease).  The neurologist also has noted I have several birth marks and says they are associated with neurological development prenatally and as a baby, and just unusual brain development can cause these sorts of symptoms or exacerbate the effects of something like migraine (I'm not a doctor, but this is roughly what I'm understanding the neuro to say).  The flashing lights, halos around objects, etc that the original poster mentions is classic for migraine - usually it is an aura before the headache, but I'm being reassured that it can be an ongoing intermittent symptom too in unusual migraine cases - the neuro I'm seeing researched migraine patients for 10 years apparently so I suppose he has seen a lot of things.  He still has never seen my "constellation of symptoms", but he says the temporal profile (i.e. that they are intermittent and ongoing) can pretty much only be migraine. Hope it helps anyone worrying a lot about their symptoms - I would still go get it checked and do the tests the doc recommends.  It isn't fun having ongoing visual problems but at least there is reassurance there is often a benign cause.

[rumpled]

Pituitary tumors cause a lot of symptoms - but the trigeminal nerve issue comes up, as far as I know, post op when things get pushed during the operation. A standard MRI can pick them up only if the tumor is of a certain size. Smaller tumors require a technique called dynamic which means the contrast is given while you are in the machine and images are taken to the uptake of the contrast is recorded. Then the tumors can be detected by changes in the uptake.

Numbness to me sounds nerve - and there are disorders that effect the face. It does not have to be everywhere. My aunt had Bell's Palsy. There is a world of stuff out there.

Please see a new neuro though - and get an evaluation - after all, we are patients too, guessing - and you need to be seen, get a history and a physical evaluation done.

[cam94z28]

Glad to hear that a normal MRI would cover the orbits as well. What about if it was a pituitary tumor? I've read those can cause similar sensation (numbness/tingling in the cheek/chin) if they're around the trigeminal nerve. Would the standard MRI cover enough of this area?

My previous MRI was probably close to 10 years ago now. It is possible they missed something, especially being only .2T, and no contrast. I would really like to convince myself I don't need another though. The visual floaters/streaks/etc... have been quite a bit worse lately than in the past.

I don't have any other nerve related symptoms in the body, arms/legs/etc... They are constrained only to the left eye, and left side of the face.

Hopefully theres something out there that can lessen the symptoms if it's not a tumor.

[rumpled]

I would guess the two separate scan thing is a total insurance trying to get buck thing... of course - they can see the optic nerves fine in a brain scan and in the newer MRI and especially with a CD where they have tools to zoom in - so another scan is not needed. They always comment on the optic chasm in my films anyway.

I get the twitch too. I would not pay for another MRI out of pocket unless you really had too.

[tiredbuthappy]

my eye twitch was also on my "bad" side. apparently, that was just a coincidence.

The prescription and the precertification for the MRIs made it clear that it was considered 2 separate scans. The whole process of having both brain and orbits with and without contrast took a long time- well over an hour. I also know they were separate because before I went into the machine, I asked the tech how long it would take. He added out loud how long each portion would take. I think my Rx was for both head and orbits because they wanted specifically to look for lesions on the optic nerve as well.

I agree with rumpled that a visit to a neurologist would be a good idea. Also, I would go for the MRI with contrast. It may give you answers, and if nothing definitive, it can at least rule out many many conditions like MS, a tumor, etc...

[rumpled]

A normal brain MRI covers the orbits so it does not have to be a separate study at separate cost.
There can also be issues with the eye muscles and the nerves in the face - not a tumor. I would try a neurologist who specializes in nerve issues rather than think the tumor route since you have been cleared.

[cam94z28]

I find it odd that over two visits my neuro optho found nothing. The numbers he recorded for the shape of the eye/optic nerve, etc... were basically perfect.

Was the head/orbits scan one scan or did it count for two? I'm trying to gauge the financial impact here.

The eye twitching does come and go, but the fact that it's on the same side as the other symptoms had me worried. The numbness/tingling is intermittent too. It hasn't really bothered me much today, for example, but yesterday it was pretty bad.

The visual symptoms are really bad, though. Whatever is causing them has to be addressed soon for me to get on with my life. For as long as I can remember I have found myself opting to stay home like a hermit rather than go anywhere fun, hang out with friends, etc... It is overwhelming visually, trying to function normally in unknown surroundings like a grocery store, etc... I even have major trouble trying to maintain eye contact while having a conversation, and not for normal social anxiety type reasons.

[cam94z28]

I should have made it clear that i have not been on Serzone for 10+ years now.

My symptoms are definitely neurological, but what is causing them is a mystery. I even believe my abnormal "floaters" are neurological (something pushing on the optic nerve) in nature. I'm seeing them in the way that I am because of something around or irritating the optic nerve.

If you've had the gadolinium that many times, then i shouldn't have anything to worry about. I don't have any liver/kidney issues that i know about, but my doctor already gave me paperwork for blood work. I will definitely get that done before i consider an MRI. I only wonder if it can lodge in tissues or something as mercury or led can. It is a heavy metal is it not?

[tiredbuthappy]

my neuro opthamologist picked up on the damage to the optic nerve, but could not isolate the reason why. I was told from day 1 that it could be A) a tumor  B) multiple sclorisis or c)ideopathic (i think that's the word she used- no identifiable reason- either a fluke, due to a virus, etc...)  All of her tests showed that there was damage to the optic nerve, but none showed that it was caused by a tumor. I was actually surprised that her pictures of the optic nerve didn't show compression, since the tumor did significantly displace the optic nerve. But I suppose the compression may have been further in the head that her images showed.

My diagnosing MRI was of the head and orbitz. It was long! Both showed the tumor. However, the MRI I had before surgery was only of the brain.

I was nervous about contrast at first, but now that I've had it and had no reaction, and know how important it is for my treatment and diagnosis, I do not fear it. I also heard that you should drink plenty of water afterwards to help flush it out of your system.

Oh yea- about eye twitching- after my diagnosis, my eye did start to twitch. Of course, I panicked thinking it was a new symptom. Both my neurosurgeon and neuro-opthamologist thought that it was not a symptom of my condition, but rather anxiety. It did disappear when I took my Xanax.

[rumpled]

The neuro-optho would have picked up a lot of eye related disease including many brain tumors as well - anything impinging on the optic nerve.

Serzone does have a couple of rare nerve side effects that could have caused your numbness. Have you looked up the effects and talked to your pharmacist and/or prescribing doctor about them?

Eye twitching though - everyone gets from time to time. The facial numbness though differs and could be anything from the medication side effect to TMJ on to other things - there are a lot of facial palsies as well. Even fifth nerve issues - and those are neurological, not brain tumor.

I get gad all the time - if you are not allergic, drink well before the scan (maybe not right before!) and certainly after to pass the contrast. Gosh, I have had gad at least 15 times. Or maybe that accounts for something - but my liver numbers are fine. The difference between the scans is remarkable. Even with 3T...

[cam94z28]

nope. haven't had any nerve tests. When all of the previous tests came back normal, my neuro-opthamologist blamed the serzone. It wasn't even considered. I have no insurance, so neurologist visits could get expensive. A neurologist could probably help identify the facial numbness, but shouldn't my neuro-opthamologist have picked up any eye related neurological issues?

[cam94z28]

I never had it with contrast because i had read of the horror stories of people ending up with NSF after having gadolinum. Granted they had....i think it was kidney issues, but i didnt need another problem to worry about. if it might finally give me a diagnosis i will reconsider. My scans were only .2 tesla. Theres a new 3T scanner (15 times stronger) in my area. I bet it would work well without contrast.
Can i ask what type of mri you had Was it just a standard mri of the head I kept telling myself i should have had one of the orbits rather than the head.

[tiredbuthappy]

I would insist on MRI with and without contrast. I just had a brain tumor removed that was affecting my vision. It was NOT visible on the MRIs without contrast, but the tumor lit up with contrast. In fact, it was completely missed on my first round of MRIs because I was pregnant and couldn't have contrast. But even once it was diagnosed and found with contrast, it wasn't evident looking back at the MRIs without.

[rumpled]

Have you had nerve tests?