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Have the eye doctors you seen found anything abnormal on your eye exam or have they done a fluorescein angiogram?
Hello Dr. Rick,
No a fluorescein angiogram has not been done. They have taken images of the eye and showed me a computer screen and printout but it was by an Optometrist. The only thing abnormal was that one Optometrist noted an abnormal thinness in part of the eye. Later, I went back to my usual Optometrist and he said that this was normal for me, that it is just the way I was made. I am sorry but I cannot find my notes on this. I will continue to look for them. I have not yet been able to have my primary send me to an Ophthalmologist where I think I could have better tests.
It is my firm belief that optometrists will be of no value at all in the diagnosis or treatment of our issues. They don'
t know enough to even know what they don't know....if you get my drift.
I agree with you. How dod I get my new primary to move me to an Opthalmologist, preferably an expert level? Am I not using the right terminology? Should I be concentrating on the loss of vision rather than the tint over the eye?
Given you history of porphyria you diagnositic present more of a diagnostic challenge.
Where in the US are you?
You should look at both of them but the loss of vision is the more pressing matter.
Did they do an extensive workup for your porphyria such that you know what subtype you have?
Yes, I have thought of emailing Dr. Karl Anderson, Univeristy of Texas, who operates the American Porphyria Foundation and does research on the porphyrias. I did travel to Galveston to consult with Dr. Anderson in 2008 at the end of the porphyria attack. He was also able to advise my hemotologist/oncologist during treatment. I am in Snohomish, near Seattle.
You have been in good hands.....
I believe that the vision issues are going to end up being vascular in nature and not related to the eyes themselves.
The porphyria is PCT, however, my coporphyrins and uroprophyrins continue to remain higher than norm and there is the concern that I may have HCP or VP, one can have several porphyrins.
When you say vascular what possibilities might this be?
blockage or inflammation in the major artery branches that serve your eyes. It could also be due to inflammation. I think given all that has been going on with you that you should see an ophthalmologist, but even more then that, I believe you would do best with a team approach to your workup and treatment.
Will the catorid ultrasound help to see this type of issue?
Casey Eye Institute in Portland is an excellent place to go and they are close to you....Portland Oregon.
Yes, it will but that only looks at a small part of the vascular system, although this is the area most at risk for the issues we are talking about. An MR Angiogram would better show the entire vascular system of your eyes, and would also show the brain, although that is not an issue here
Portland is 192 miles from my home. My daughter lives there. I am unable to drive that far due to the nerve damage from an ependymona tumor removed at L1-2. I usually take the train but, it's a 2 day trip. I'm surprised that Seattle, being so much larger of a city doesn't have an eye institute. My insurance does allow me to find a doctor myself, just remembered that.
Of course, the "Gold Standard" test is a complete cerebral angiogram. This test is not to be taXXXXX XXXXXghtly as up to 1% of the time it can cause stroke or even death......but it does give very good pictures :o)
Is the standard procedure to do a carotid ultrasound and then go the MR Angiogram, isn't that more complex to do?
I'm not sure about Seattle personally. Let me check the American of Ophthalmology web site. be right back
I see that UW has something, they are difficult to get an appointment without a doctor's referral.
What do you think about finding a neuro-opthalmologists?
Yup. You are right. UW is the place in Washington. I don't know them but I'm sure a University based program would be good. The Best University program? That would be Wills Eye Hospital in Philadelphia.....
I liked your thought in your first statement about consulting a neuro-opth. There are not many of them around, I have one in Texas who is a persona friend, and they are very, very well trained. It sure wouldn't hurt for you to see one.
I travel to Houston on 11/12 through 11/18. Where in Texas is your friend located?
I think you will find that any of these high power programs will be much easier to get into if you can have another doctor call them, better if it is an an ophthalmologist.
Way north. Lubbock. At Texas Tech University.. Dr. Ken Freeman. He dresses funny but his is top notch.
Oops....his name is Freedman....mistyped.
Thats a little far from Houston for this trip. My daughter's having surgery.
yup. It's real far. AboutXXXXX/p>
Texas is a big place
Well, how about if I: have the carotid ultrasound done - sched. for 11/22. In the meantime shoot off an email to Dr. Anderson.
That sounds like an excellent plan. I believe you are on the right course.
Then try for an appointment with a good opthalmogist and when his tests are exhausted push to move me to a neuro-opthalmologist? It's too bad this has to move so slowly through the channels. My loss of vision episodes are more frequent and much more loss of vision during the episode.
I think things will work out ok. You are taking an active role in your care and I'm sure you will make your voice heard if you need care faster.
I hope I've been of some help today.
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OK. Thanks very much for your help and time. It really is good to talk to an expert and help get your path worked out. You've been great. Thanks again, Denise
I guess I'll hit the Save & Exit and then Accept button and let you get to another question.
don't forget to push the pretty green button.....it is so very lonely :o)
you can print this out too...