Eyes Blurred by Pseudo Tumor

[GiantElfen1]

I've been diagnosed with psuedo tumor which was 1st discovered by exceedingly blurred vision in my right eye. Ialso had severe headaches & memory loss.
The neuro-opthamologist sent me for an MRI of my brain, with & without contrast & said my brain looked fine so she sent me for a spinal tap.  My spinal fluid pressure was almost twice as high as it was supposed to be.  They drained a good bit of spinal fluid off but the doctor performing the operation said it took a lot longer than usual because I have a very narrow passage.
Then I was put on 500 mg Diamox twice a day, which I took just like I was supposed to but it really made me sick to my stomach!  Nauseated ALL the time!  Even vomitted my food a few times. Then after I was re-evaluated in her office she raised the amount to 3 a day.  I tried for a week but I was SO sick I begged her for anti-nausea medication which she finally prescribed.  But even with it I was still sick as a dog! Oh and I take 2 Prilosec a day as well.  So I went back to 2 a day on my own.  But I was still too sick to eat.  I'm diabetic & my sugar levels would be real low because I wasn't eating.  So I quit taking the medication altogether.
Now I'm having blurred vision in both eyes the right being real bad & the left not so bad yet but blurry.  My eyes weep all the time now.  And the headaches & memory loss is back.  So I'm going to 1 Diamox a day until I can see a neuro-surgeon to see if he can do something other than medication that makes me sick.
Am I going in the right direction?  

[John C Hagan III, MD, FACS]

Diamox is a rough medicine and many people have trouble taking it. Maybe you'll tolerate 125 mgm bid. You could also have an optic nerve fenestration procedure.

JCH III MD

[Randa1010]

Today I was diagnosed with a pseudotumor behind both of my eyes. I have been having headaches for about 4months now, a raging ocean in my ear for several months, but for the past few weeks I have experienced several blackout spells, where I would bend down to look at something and when I stood back up everything would be black for at least 20 seconds.I also had a horrible headache w/vomiting that send me to the hospital via ambulance about 2weeks ago. I to have experienced memory loss but I thought it was due to the Seroquel 100mg that I take to sleep nightly. Upon hearing the news this morning I was directly over to the Neurologist to have a spinal tap. He took out 40cc, telling me that he normally only takes out 10cc. He said to go home and rest and my headache would be a different type of headache, but eventually the pain would be massively reduced. I currently still have a headache, but not as painful.
I am absolutely scared to death. I just finished an intense drug rehabilitation program, and am 121days sober. I am currently taken Suboxon 16mg daily. Which in my mind has accounted for my rapid weight gain, even though I've only gained about 15-20lbs.My Suboxon doctor says that headaches are not a side effect, but should I stop taking it? Will it have any effect on the Zonisamide 100mg, 3times a day that the neurologist put me on?

[John C Hagan III, MD, FACS]

We Have some good discussion on pseudotumor cerebri which you can access with the search feature. Also the section on emedicine is very good.

We do not give recommendations on medication dosage and your questions will need to be answered by your physicians.

JCH MD

[MrsKen32]

As of August I've been diagnososed with Sudeo Tumor Papilidem/Papilities. I've since been to four Specialist (two Opthomologist/Nueruologist/Nuero-Opthomologist) On Tuesday the Nuero-Opthomologist sent me to have a Lumbar puntcture . .... What can I expect from here on ? How can I get better ? Is there a cure for this ? Please let me know if you can .
Every since my headaches have been unbearable , Is this common ?

[John C Hagan III, MD, FACS]

There is a wealth of information on "pseudo-tumor cerebri" you can access it with the search feature and by reviewing the eye care archives.

JCH MD

[GiantElfen1]

I don't know if this will help but back in April I had a VP Shunt put in my head to drain off the extra spinal fluid.
My eyes are much better.  I've been to the Optometrist & my prescription is less than it was before this whole business started.
The headaches have subsided.
And my memory is back.  Except for some during the time I was having the problem.
God Bless!

[John C Hagan III, MD, FACS]

Stay very close under the care of a neurosurgeon, neurologist and neuro-ophthalmologist.

JCH MD

[GiantElfen1]

Dr. Hagan, is there a perticular reason why you give the warning to stay very close under the care of my neurosurgeon, neurologist & neuro-opthamalogist?
My neurosurgeon assures me that I shouldn't have any trouble with my shunt or the high spinal fluid pressure for 15 - 20 years.
Are there other complications?

[John C Hagan III, MD, FACS]

I think you were given an optomistic view. Many shunts require revision and pseudotumor can cause blindness.

JCH MD

[GiantElfen1]

OK, now I'm concerned.  My niece had trouble with her shunt after 11 years of good service.  And when she had trouble I asked my neurosurgeon (several times) if that was what I had to look forward to & every time she assured me that my shunt was of a far more advanced nature than anything my niece had gotten 11 years ago & that I had little to nothing to be worried about.
In fact, she said worrying about it would cause more trouble than the shunt would.
But thanks for the warning.
My wife & I have moved to another state & I'll start looking on our insurance company's site for another neurologist.
Thanks.

[MrsKen32]

Thanks for the reply,
My husband sent the message but failed to complete everything.  On Thursday I had to go back and have a epidural blood patch; the headache was TOTALLY UNBEARABLE (not one of my best experiences) I still had headaches but not as bad as the Spinal leak headache.  I called my neuro-ophthalmologist Monday and was told to schedule another epidural blood patch...I refused and called my neurologist she insisted that I at least call the Dr. who performed the procedure and see what he suggest.  (I haven't been feeling the same since the initial LP was done) I did that and we both agreed that we didn't want to do that again just yet. However, in the mean time my PCP has given me isometh/apap/ dichlor.  I'm so tired of feeling the way I do.  

The Radiologist said the pressure on my spine was 50, what does that mean?  Is that why I feel so much pressure on my forhead and neck area?  Can Chirpractic services help any?  

Thanks

[John C Hagan III, MD, FACS]

Chiropractic services will not help pseudotumor cerebri and could make it worse.

JCH MD