I have not posted in a while. Please don't just accept that GCA makes you cross eyed and you have to live with this. I was on holiday in September 2015 and suffered a relapse at 5.25 mg. Pred. Sometimes I think that I have a crossover of Wegener's. (Granulomatosis Angiitis Sp.) The upper sides of my nose (right side) and my right ear hurt a great deal. Three days of an increase in Pred fixed it. Of course then I was stuck with the increase for a while and never got back as close to 5 mg. Two Mondays ago I was diagnosed with a very small (6 mm by 3 mm [or so]) brain tumor, frontal lobe planum meningioma. It looks as if it's benign and slow growing, but maybe it is pulling in my right eye and causing my cross-eyed-ness to be somewhat debilitating. Even with prescriptions for prisms the cross-eyed-ness is affecting my navigation, both for driving and for walking. Just before the diagnosis I saw a black curved edge on the vision in my right eye. Inside the edge was a light in the same shape of the black edge. (Again I increased the Pred, and symptoms abated.) I'm not sure why my Neuro ophthalmologist took a MRI of my brain near my eyes--whether it was the cross-eyed-ness or the black arch in my vision or something else (maybe the measurement of my pupil). I went in for a check up and stepped on a fast moving roller coaster. I didn't have a list of questions, etc. Generally these tumors don't come out--they're small, and brain surgery is generally not good for the brain if the tumor seems to be something that you can live with. The MRI showed that I have been having TIAs in the small vessels in the area. Again: Small Vessels? Don't know if these are hurting the eye or why I have them. Age? I am 66 years old. Wegner's crossover?
I am having another MRI tomorrow I guess to look at the area of my brain closer to the right eye. Now I question everything. Why I have certain symptoms, etc. But generally meningiomas don't get discovered on account of symptoms. A brain surgeon thinks that the tumor might be unrelated to the eye turning in. But I think that the neuro ophthalmologist disagrees. (I'm not sure what he thinks.) This is not an issue unless I'm a candidate for surgery or some other type of treatment on the tumor.
And so the saga goes on and on and on.
I have empathy for all of us who don't seem to quickly go into remission. And thank you for your continued support.
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Asbeck
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Asbeck, I'm sorry to hear of all the problems you are going through, and I'm sure it doesn't help that the brain surgeon and neuro ophthalmologist have different opinions. But it's true what you say about not accepting everything being due to GCA when we experience problems with our eyes. Our son awoke one day with blurred vision which turned out to be caused by a stroke (a clot to the brain) and he is on blood thinning meds for the rest of his life. A couple of members of my support group, both with PMR, encountered problems with their eyes on different occasions which they feared might be GCA. With one member it turned out to be a TIA and the other a detached retina, both needing emergency treatment. It does sound as though you are being well monitored - I do wish you well.
Celtic: I am so sorry about your son and friends in your support group. I guess that we all have to consider illnesses other than GCA and PMR. I'm also very happy that the detached retina was timely addressed. I tend to attribute every one of my eye problems to GCA. I will try to be more broad minded in the future. Thanks for the education and caution. If you wish then read below--it looks as if I am OK (re: the brain tumors), even though all of this has made me a basket case. It has completely obliterated my stiff upper lip and sense that GCA is not so bad. So now maybe I'll proceed on to meditation, etc. Thanks again.
I do seem to recall your name. Typical doctors. Hope you get sorted out soon. 🍀
Thank you coniston11. They took another MRI of my brain yesterday, and there seems to be something else going on as well. Now everybody thinks that the meningioma is not turning in my eye. So I wait for them to call me today about the "something else." I appreciate your reply.
Asbeck, so sorry you are dealing with this. PLEASE get a 2nd opinion. I suffered with migranes for over 10 years with a meningioma diagnosis. It was not until I had enough did I seek a 2nd opinion with neurosurgeon. Because the mri's were not done with contrast the menigioma had changed to agressive without being noticed.. In 2013 I had a major cramiotomy to remove the tumor. Although benign, still a few cells were atypical. Without the neuro surgeon's agressive treatment plan, I would not have lived 6 months.
In January 2016 I got a Pmr diagnosis. Tapering prednisone at 7.5 now. Having horrible side effects. Worse than any brain surgery. Keep us posted how you are doing.
NEESVIG: This is terrible! Side effects worse than brain surgery are un-fathomable. Without the contrast I certainly cannot see anything. But it's so clear with the contrast. I can't imagine giving you an MRI without contrast. Thank you for your post. I have had the 2nd MRI (2 weeks after the 1st), both with contrast. All Neuros believe that the Meningioma is small, probably slow growing and benign. Therefore it should not be taken out now. The damage from the surgery would be worse than the tumor. (Except that I have lost the ability to drive-the cross-eyed-ness [whatever is causing it} is that bad.) They also will do a 3rd MRI at the very latest in a year and annually thereafter. The 2nd MRI maybe showed something else. !!!!!!! But then everyone at Bascom agreed that it was nothing; that my head was turned very slightly to the right. However, on account of you I will upload the 2nd MRI to Johns Hopkins. All this has scared me to death. Truly, I was ready to make funeral arrangements. I guess that I am lucky that we have Bascom Palmer Eye Institute with Neuro-ophthalmologists and Johns Hopkins with possibly the best neurology dept. in the US. Both institutions now agree and will follow me. I will remember what happened to you and will keep up with it. Thank you again. I hope that your bad reaction to Pred will lessen. And I applaud you for going through all of this intact. I don't know how you did it without going crazy.
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