I' m back from the hospital after my last OCT scan. The results are pretty good vue the situation. No new flares, no beovascular membranes, no new blood vessels, no bleedings. There are some variations of the thickness parameters but not very significant. A new scan has been scheduled for the end of January. As always, I would like to thank each of you in particular Mike and Betti for their friendship and constant support. You' re really great guys!
Glad you got a pretty good report Federica.
did they say why you had the variation in retinal thickness? any sign of Cystoid Macular edema that could explain the thickening?
No edema. The doctor was certain of that. The variation is very mild, (about 4-5 microns if I remember correctly) that' s why another scan has been scheduled, to strictly monitor the situation. One possible explanation though,could be that because of my very poor fixation due to macular damage, I can 't fix the central point while the scan is in progress and the computer is not completly able to compensate with its algorhythms. The scan has been followed by a fundus examination also with a 3 mirrors Goldmann lens. There were no new significant patological elemnts. Thanks for asking!
Have a good day,
Federica.
Ps. Why if I select the "email me notification" option I don' t receive any message?
Re: update
Liz will have to answer that as I don't know about the email notification question.
I'm glad they are following you closely. i have epiretinal membranes which are just adjacent to the center of the macula which distort stuff and make me look around to try to see stuff so concentration on one fixed point is very difficult to do so I understand completely your comment about fixing on the center of the OCT scan machine.
the very minimal change in retinal thickness is good to know and I hope this resolves soon for you without any new symptoms of vascularization or bleeding.
I' ll do my best, but you, try to do the same. Ok?
I' m sorry to hear about your epiretinal membranes...
Yes, I think I' m in good hands; both my eye doctors are very accurate. Today results are quite encouraging. I agree with you and I' m very happy. My situation seems to be quite stable which is really good. I' ll keep you posted anyway. The next week I have a new appointment with the rheumatologist.
Wishing you the very best,
Federica.
Ps. Do I have to post in a specific section to ask Liz about the 'technical probem'? Thanks a lot for eveything.
Re: update
At the top of this page is a hot linke CONTACT US and then send a note and it will get to Liz
she doesn't have an email listed to contact her and her ez inbox is turned off.
My husband had an appointment last week with Dr. Foster. They seem to think the medicine is working, but the main problem is the neovascularization. So we have some decisions to make regarding a possible implant.
It is something we have to think about for a couple of weeks, but I am sure he will end up getting it done at some point.
Wishing you the best on your next set of tests in January!!
I am glad to hear your exam went well. What is plan when seeing rheumy at appt?
Bob has epiretinal membranes, they always mention them, but so far they have never said they need intervention yet. I am hoping they don't, and hoping things might stablize a bit for awhile for Bob.
A few months ago DR. Foster said there was something that concerned him on Bob's FA, but he said it was old damage and not to worry about it. There have been so many other things going on I have never had a chance to ask what it is and when it was damaged
What is the neovascularization? I have heard of it, but do not know for sure what it is or if Bob has ever had any of it.
Bob's macular edema gets to about 387 to 436um bf he gets the Avastin shots. The total blue coloring of the OCT was the first he has ever had in that or close to a normal range since he had his first OCT with Dr.Foster on that left eye. It was quite a pleasant shock. I do not remember the ums bc I was so pleased with the color, but I think it was in the mid or high 200s of um. I was pleased with the results that for the first time in a few years, I did not reread all my notes for that recent trip and other recent trips trying to understand everything they were working on doing and what is wrong.
What is the weather like there now? How is your mood after the exam? So glad it was good news. With all Bob goes thru Dec or Jan sounds like a long time between OCTs, but then his swelling is at 50 um 60um range each month bf the last visit. I don't know if he had swelling during that one month period, but it has never been below 300 at the one month point bf.
We got a call today from the contractor fixing our hurricane damage, and they hope to get to that last room we put off while traveling in two to three weeks, so that just leaves some damage to yard and garden brickway that we have to do when we have time and money a inurance does not cover those. No bad dreams about hurricanes or Bob's health last night. No dreams at all that I recall. He is feeling the best I have seen in a while. Actually put some things away into the back workroom where all his "stuff" like car and yard and etc worktools go. Getting them out of boxes and scatter along the areas close to the house where rain cannot penetrate the boxes of stuff. Real good indication that he is doing well. Just wish they had a geology job for him, and he would be in such fine spirits I would have to be amazed to see it.
Let us know how things go with the Rheumy visit and also I am sure you do always call for a checkup with eye doc when anythign concerning pops up.
may I call you Deb? Thanks for your kindness. I hope my eye will remain quiet forever or at least for a very long time. I' m very pleased by the scan results. I' m also glad to hear that meds are working for your husband. Dr. Foster is certainly the best man for the job.
you' re always so kind! Thanks a lot for your words. My mood is pretty good, vue the results of the scan. I' m sorry to know about Bob' s neovascularization. Here' s a short paragraph about CNV from wikipedia but I' m sure that if you search the MERSI website you' ll find something even better:
"Choroidal neovascularization (CNV) is the creation of new blood vessels in the choroid layer of the eye. This is a common symptom of the degenerative maculopathy wet AMD (age-related macular degeneration).
Causes
CNV can occur rapidly in individuals with defects in Bruch's membrane, the innermost layer of the choroid. It is also associated with excessive amounts of Vascular Endothelial Growth Factor (VEGF). As well as in wet AMD, CNV can also occur frequently with the rare genetic disease pseudoxanthoma elasticum and rarely with the more common optic disc drusen.
Symptoms
CNV can create a sudden deterioration of central vision, noticeable within a few weeks. Other symptoms which can occur include metamorphopsia, and colour disturbances. Hemorrhaging of the new blood vessels can accelerate the onset of symptoms of CNV.
Signs
CNV can be detected by measuring the Preferential Hyperacuity Perimeter.
Treatment
* In 'wet' (also known as 'neovascular') Age-Related Macular Degeneration, CNV is treated with photodynamic therapy coupled with a photosensitive drug such as verteporfin. The drug is injected into the eye, where it accumulates in the new blood vessels. It is then activated by a laser light. The drug destroys the new blood vessels, and prevents any new vessels forming by forming thrombi.
* Anti-VEGF drugs, such as pegaptanib and ranibizumab, are also used to treat CNV. Anti-VEGFs bind to and inactivate Vascular Endothelial Growth Factor.".
I' ll let you know how th appointment with the Rheumy goes...I hope everything' s gonna be fine.
Re: Hi Betti!!
CNV occurs in autoimmune related uveitis as well. common association to MS, Behcet's disease, SLE etc.
neovascularization can also occur in the Cornea a complication of Corneal transplant.
cyclitic membranes can also develop blood vessel growth (a membrane which grows behind the iris)
I mention all of this because 'neovascularization' can occur elsewhere in the the eye besides the Retina. don't want people to be confused though so location within the eye is critical in discussing this.
Deb, what do you mean by 'implant'? is it a steroid implant into the eye to control uveitis? is it an intra Ocuar Lens implanted during cataract surgery?
They feel my husband's birdshot is under control with the cellcept, cycosporin. CSF feels that his biggest problem is the neovascularization, blood cells that are growing and affecting his field of vision which is from his inital eye hemmorhage before he was diagnosed properly as his vision is deteriorating in that eye.
He has had four avastin shots and on our 9/24 apptmnet they recommended a Retisert implant. But with all the complications of that, such as cataract and glaucoma, we have to think about it for a few weeks. It seems with my husband, anything that could possibly go wrong, will go wrong, so this operation concerns us greatly although I have read of many other patients who have had a lot of luck with it.
a lot of patients on the lefora birdshot group have had great results. But it was a lot to digest -- although we are glad that the uveitis is under control as we don't want to go up the ladder with meds.
Thanks in advance for any input on the retisert implant, where I think they would do a vitrectomy first and clean out all of those old cells and floaters that are in the way.
deb
p.s. federica, yes, call me deb, I just signed in with deborah
Re: implant
Deb,
personally, I'd stay away from the implant but that is a decision that you will have to make with CSF. I'd rather go to 'other meds' first, have a vitrectomy etc but that is just 'me'. steroids and I don't mix well with glaucoma as a result and they caused my cataracts (removed with IOL's now). I'm diabetic too and oral steroids push up glucose in the blood as well.
I would trust doctor Foster though as he has one hell of allot of experience with all forms of OID. He wouldn't suggest an Implant if he didn't think it was the way to go. He uses steroids SPARINGLY knowing the consequences of their use but uses them when they are the only thing that will stop something whether that be OID or other complications from various masquerade syndromes etc. I don't know if Methotrexate injection into the eye would help or not.
Wish you the best,
mike
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