Hello and thank you for your question.
Your mother is dealing with a difficult diagnosis and she has my sympathies.
Parafoveal telangiectasia many times presents with good vision or just mildly decreased (20/20 to 20/40). It sounds as if, given the history you've provided of her needing multiple Lucentis injections and her difficult with near vision tasks such as reading, that she may already be having some significant leakage from the retinal capillaries causing vision problems.
Unfortunately, not knowing what her exam looks like and what her fluorescein angiograms have looked like before and after the injections, I cannot say for certain what her chances of losing significant vision are. The vision in parafoveal telangiectasia can, over many years, decrease dramatically and can, in some cases, lead to legal blindness. If there is abrupt vision loss, this can be a sign that there are some new (and unwanted) blood vessels growing underneath the affected area of the retina, which would require these types of injections to stem the tide of vision loss. She may already be at this stage if she is receiving multiple Lucentis injections.
Approximately 5% of patients with this disorder go on to develop these new blood vessels (neovascularization). Unfortunately, however, there are no randomized, double-masked controlled clinical trials evaluating the efficacy of medicines such as Lucentis in the treatment of this disorder.
So, in summary, most people do not go on to legal blindness, but it is a distinct possibility. Depending on what type of pathology (new blood vessels versus chronic leakage of blood vessels) is causing her problems with near vision, her prognosis may be quite different. Unfortunately without knowing her exam and the other details of testing, it would be very difficult for me to give you odds; even with that information there is not a great deal of research trial information on this disorder to provide hard and fast prognostic odds. Sorry.
Does that help address your concerns?
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My opinion is solely informative and does not constitute a formal medical opinion or recommendation. For a formal medical opinion and/or recommendation you must see an eye doctor.
All I can comment is that the treating retinal specialist appeared content with the first 3 lucentis injections. The swelling had gone down in that eye based on pre and post photos. However, her vision hasnt declined nor has it improved with her reading ability.
Obviously this physician can see something of improvement in the pictures.
I posed him the same questions and he didnt reply back.
So I guess another 3 shots of lucentis sounds theoretically good but some stats must be available on improving this condition.
Does 3 shots become 6? Does 6 shots become 9 shots?
This appears a bit of crapshoot. A definitive answer was being sought.
Yes, I can certainly understand how this appears to be a crapshoot.
The reasons why this appears to be so is two-fold:
1. Lucentis is a relatively new drug. It has only been available for us by ophthalmologists for only a few years. It is only FDA approved for the treatment of wet macular degeneration. It has a cousin called Avastin which is being used in the same way Lucentis is being used, but for many more off-label indications. In your mother's case, Lucentis is also being used off-label (there is no FDA approved indication to use this for parafoveal telangiectasia). However, the fact of the matter is that there are many diseases in the eye which have an angiogenic (blood vessel source) etiology which respond to both of these medicines. There are many studies going on now to compare both of these two drugs in their use of other common retinal diseases such as diabetic retinopathy and strokes inside the eyes. Unfortunately, however, parafoveal telangiectasia is such a relatively uncommon disorder, it has not been studied in a definitive, randomized, double-masked controlled study and likely will not be with respect to these medicines for some time, if ever. The most likely scenario is that doctors will use these two medicines off-label for PFT and report on their results and a preponderance of data will further or halt any trends to use these drugs.
2. Because there are no clinical trial data regarding PFT, it is up to the treating physician's best judgement to decide what regimen is needed. There are still no hard and fast treatment regimens that ophthalmologists use even when using Lucentis to treat wet macular degeneration, the condition for which it is FDA approved. In your mother's case, the decision about when/if to continue Lucentis and for how long does become a decision based on education, prior experience and the specifics of how your mother's eye looks and how it responds to the drugs.
So to sum it up, you will be very unlikely to get a definitive answer from anyone on this matter because there is none to be discovered. This is likely very unsettling for you and I can understand your apprehension. However, these drugs have shown great promise in treating a large amount of vascular ocular diseases, but there will be a large unknown about them with respect to PFT and other less common retinal vascular diseases for some time.
Does this help address your concerns? I know it probably is not the answer you want, but unfortunately in medicine there are many answers that we wish to get, but just are not factually supported to come to any conclusions, therefore the most honest and forthright answer is the one that has to be given, as the answer I have given you.
I shall authorize the payment though the answer was not what I was seeking.
Hard stats, my fine doctor!
The respective physician overlooking my mother doesnt like questions posed.
He has the personality of a toad but I digress. As long as he is competent.
My last question - the condition that I listed -parafoveal telangiectasia, which he diagnosed.
Is that a disease easily recognizable? Regardless, will be recommending my mother seek another 3 injections.
Also, my mother had a bit of bleeding on 1 of her 3 injections - her eye was really bloodshot. She takes 2 baby aspirins and 1500 mg Omega 3?
Should she cease taking this a day or two prior to her next injection.
The bleeding wasnt a huge volume but in the eyeball a bit of blood looks alot more henious than on ones buttocks
The disease can easily be confused with diabetic retinopathy and in fact, is often seen in persons who are glucose intolerant, so many times this is diagnosed as diabetic retinopathy. So in other words, no, it is not especially easily recognizable but certainly is in the differential diagnosis for retinal telangiectasias near the fovea.
As far as whether she should stop her aspirin and omega 3, that is really a decision for her, you, and her primary care doctor. If her primary care doctor has placed her on these for a medical reason and believes that if she should not stop them she would be increasing her risk for a cardiovascular event, then no she should not stop them. If, however, her doctor believes that it is okay to stop them for these injections, she could stop them 7 days before the injection and then restart after the injection. These subconjunctival hemorrhages do look nasty sometimes, but they are usually just cosmetic and sometimes mildly irritating; otherwise they usually are self-limiting and don't pose an overall problem with the eye.
Okay thanks Dr Dan.
You are the only eye doc who fielded the question over the last two weeks on this site.
Guess my mother will proceed with the extra 3 injections for the time being.
Hopefully the nuisance pain will be be overshadowed by reading enhancement or at least stop it in its course.
I shall keep you updated so dont close the question......take care
I hope that your mother does better with the upcoming injections. The good thing about Lucentis is that it is very good at stopping leakage at the very least.
I hope to hear she does well and she'll be in my thoughts. Good luck. Look forward to hearing from you.
If you recall my mother has the above condition.
She also suffers from periodic facial rosecea.
Yesterday, she got her 4th injection of lucentis.
Her first three shots were from Jan to March of this year.
But yesterday the doc also gave a steroid injection in the eye
Previously, it was only drops.
He thinks in combo it would help her condition
Its planned only once for her three next lucentis shots
1. Can you comment on the steroid injection - why?
2. Can this flare rosecea in her face
She actually had a flare up of rosecea today.
Cheeks hot to the touch and forehead cool
Well, the steroid needle is only supposed to be once of the next 3 lucentis series shots.
I dont think its coincidence she had a roseacea flareup 24 hours post both needles.
Anyhow, hope this helps here
One more question to this situation and if I pose a new question down the road, will provide new funds.
My mother is 6 days post op since steroid shot and lucentis.
On her first three sole lucentis shots, her eye wasnt bloodshot even a couple days after.
This time, her eye is still bloodshot after almost a week. It was beet red last Friday and the "redness" isnt as bright as then but still distinctive when you look at her whites of her eyes.
1. Is this normal
2. When will it resolve
3. Anything to speed up process
Thanks and take care
I would say that it is abnormal for her eye not to be bloodshot a couple of days after the injections; however, I would say that by now she should be resolving the inflammation in the whites of her eyes from the injection and it sounds like she is. She definitely is having more inflammation with this one however as evidenced by the lingering injection in the conjunctiva.
I would think that this injection in the conjunctiva really should be resolved by 7-10 days after the injection; if not, I would consult with the doctor to discuss whether there might be anything else going on such as infection.
There really wouldn't be anything to do necessarily to speed up the process; however, it never hurts to use artificial tears 4-5x/day and or lubricating ophthalmic ointment. That may help the eye be less inflamed sooner.
Hope that helps.
I just added a second followup to this.
As may recall, I had a concern for my mothers pinkish eye after she received her 4th lucentis injection but this time with a steroid needle. This was done October 8th and 3 3 weeks plus its still pinkish.
Notified her eye physician and he stated not to be concerned as it would clear as long as she didnt have any pain which she doesnt. Her 5th injection is two weeks from now. He stated he would proceed if if the eye still wasnt 100 percent white.
My mother also experienced a funny sensation this morning. She felt she had rapid eye movement in both eyeballs. She took a nap for an hour and it cleared.
1. Should she halt having the 5th lucentis til the eye is 100 pecent clear
2. Whats the significance/cause of the rapid eye movement......she couldnt describe the feeling exactly, only she felt both eyes moving quickly???
Thanks for the advice
Accepting only an answer from EYE DOCTOR DAN B
CAN DR DAN B PLEASE RESPOND TO THIS FOLLOWUP QUESTION AND NO ONE ELSE JUMP IN
Can Dr James please release this question
What you are describing is actually not uncommon in persons who have had multiple procedures / surgeries on their eyes. If she has received a clean bill of health from her ophthalmologist regarding signs of active inflammation or infection, then I do not think lingering conjunctival injection should preclude the next Lucentis drop. Unfortunately some people can retain a baseline level of redness after their eye has been through so much.
As far as the rapid-eye movements, that is a peculiar symptom. Many times what the patient perceives, though, is different from what is actually happening. Sometimes the fluttering or twitching of an eyelid can elicit this sensation of the eyes moving rapidly. Some persons have a predisposition for the eyes to not stay aligned together at all times, and at certain times such as when they are significantly fatigued, sick, inattentive or inebriated, this predisposition can manifest as the eyes drifting out or in and this may also be something she has been noticing. If this was a momentary phenomenon and hasn't happened before and is not happening since, resolving with sleep, then I suspect that this was related to fatigue. But if someone saw her eyes shifting rapidly or if this recurs, this would be something to alert her ophthalmologist to. However, other than these explanations, I do not have an explanation for involuntary, brief sensations of rapid-eye movements.
This is the first time it happenned - the rapid eye movement.
I asked her if it was the eyelid but she stated it were both eyeballs??
Would this have anything remotely to do with a mini-stroke.
I am just speaking theoretical - isnt that one sign of having rapid eye movement??
OR are other classical stroke symptoms need to be observed which she didnt have
I still dont really wish her to have another lucentis shot til her eye is 100 percent white.
The first lucenits shots were taken relatively well.
It was only the 4th injection which caused the latency in having the eye still pink 3weeks plus
Any final comment to this> Thanks
Involuntary eye movements can be signs of a stroke, but can also be signs of abnormal electrical activity in the brain (seizure). In the absence of any other symptoms I would not jump to either of those diagnoses, but these should be the back of your minds.
I think it is a reasonable thing to postpone the Lucentis shot a little while longer to see if the conjunctival injection resolves itself. However, the risk that her condition worsens in that time is certainly something that needs consideration in and of itself. I would balance your observation of this problem with the eye doctor's exam of her eye and need for further Lucentis.
Does that make sense?
Yeah, I guess it makes sense.
The first three shots of Lucenits were all tolerated well.
The 4th one which came almost a half year after the first three injections which were spaced a week apart HAD the steroid needle
It seems two needles at once was too much.
She does take baby aspirin and omega as a general blood thinner.
Anyhow, I shall be accompanying her to the 4th injection.
But will probably postpone it until the eye is 100 percent white.
Her eye doc should have come to that conclusion but he is a study research hog who just looks at my mother as another test subject he can write an article about
It maybe that two injections at one sitting caused some inflammation in the outer wall that had not occurred with the other injections. I would not expect that the aspirin or omega fatty acids would cause this persistent conjunctival injection, though.
I can certainly understand what it feels like to be a patient of a doctor that doesn't seem to care because even as a a doctor, I've been a patient in this circumstance.
Good luck to you both.
Also two new symptoms have risen.
Whether this has ANYTHING to do with the lucentis/steroid shot 4 weeks AGO???
She did experience a couple of weeks - just briefly, a sensation where both eyes had rapid eye movement. She no longer has that
But since Thursday her left eyelid is twitching quite a bit where she feels comfortable with it. Also she feels her eyelid is drooopy. She described it as the blinds not going completely up.
She has had eye twitching in the past but not to this extent.
Again, its the left eye which was treated.
Whats the practical recourse for this. She puts REFRESH eyes drops in both eyes
I have already made the recommendation to her eye doc til the redness is completely gone and this other condition subsides - postpone the next lucentis
Any opinion to get rid of the eye twitching
Eyelid twitching is a sign of generalized irritation or fatigue. Its triggers vary from person to person. For some it is using their eyes a lot (excess reading, TV, computer work). For others, the eye may be dry, have allergies, or they may be rubbing their eyes a lot. For many people, there is no identifiable cause, which can be the most distressing.
This is rarely due to any significant pathology, but is very likely secondary to all of the procedures that your mother's eye has undergone. Most of these resolve in 4-6 weeks spontaneously. If it hasn't resolved by then, then a workup for this may be needed. It would also be worthwhile to mention it to her eye doctor so that he is aware of it, but he'll probably tell you what I've told you and elect to wait it out and observe it because most do resolve spontaneously.
What you are doing right now is the best recommendation to give to treat this. To make artificial tear therapy work, however, they must be used consistently: 3-4x/day, everyday for at least 3 weeks, better 4. If you only use them when you feel like you need them, they won't work. I would also recommend using cool compresses 2-3x/day.
I thought warm compresses would be better to relax the eye.
You are inferring COLD
If I dont hear back, cold will be deemed as the better choice or recommended
My mother proceeded last Friday with her 5th lucentis shot
That came 5 weeks after the 4th shot which was coupled with the steroid shot.
The doc stated the steroid shot was a thicker guage needle which resulted in a blood vessel being hit and causing the blood shot look.
After the 5th injection, the eye looked the same - not worse not better
So hope time clears this.
However, her eyelid twitching continues which is driving her bonkers
Doc also stated her eyes are dry
Since the last post - my mothers eye twitching has stopped and the red spot in the lucentis left eye has cleared up. She had her last lucentis in mid November
She had a steroid shot and lucentis also a month prior in October
Other than her visual sharpness, she is fixated on the aspect that her left eyelid droops a tad meaning when the eyelid is in its raised position, its a bit lower (or not drawn up as high) as her right eye.
She blames this on the injections in the eyeball and didnt want to get the last one of the series. She had been suffering from a UTI recently so the last shot has been postponed.
I have told her the eyelid positioning has nothing to do with the injection.
What could this be attibuted to?
Thanks and safe 2011
But how does an inflammation of the eyeball itself or the injection into it - actually affect the eyelid.
I dont think she has significant inflammation.
Its just poor chance its happenned now as she is a senior - weakening eye muscle
Needless to say, she wants no further eye injection
How would this be diagnosed?
I had lunch with my mother (84) and without her glasses.
Noticed her left eyelid is a bit lower. But also in the corner of that left eyelid junction, she has a pocket of tissue - fat??? It doesnt hurt when pressed upon.
She has already been referred to a cosmetic surgeon so presume the lucentis eye doc has noted this previously.
If its true, its fat and it could be theoretically removed - how easy is it?
Or perhaps leave it alone. Docs always understate a procedure's risk
Imagine spot training isnt possible
Several rounds, I would consider to be like her last round of treatment in October 2010 when she had multiple injections; it can be anywhere from 1-12 in an year depending on the response of the disease.
I think no one can give you a definite answer as to whether the increase in blood thinners is directly involved because there's really no way of knowing. Certainly if she didn't have PFT, she would not have spontaneous bleeding, but because she does, it's certainly possible that the increase in dose of those two medicines may have contributed to it. But it's also possible that the PFT is just reactivating. No one will ever be able to definitively answer that question unfortunately.
And yes, this can start up again overnight.
Saw retina specialist today
The referring opth. inferred to him that my mother had suspect wet macular degeneration.
A series of digital photographs were taken including some yellow dye injected into the arm.
The Retina specialist (RS), it is not wet macular degeneration but the worsening of the LXT. He threw both terms around 2 years ago and stated PFT is the same and not a common condition.
We live in a public medical funded system
Two years ago, lucentis was covered for all eye condition but now only covered for serious eye conditions but not LXT
He recommended another 3 injections spaced 4 weeks apart for EVANTIS
125 per needle vs 1500 for lucentis
He stated "there was quite a bit of spillage" eye vessels and the condition had worsened a bit. Subjective analysis to say the least.
So she got her first needle of evantis through an intern who again caused a bit of bleeding. Whether she wiggled around, who knows but the whole experience wasnt
Two years ago, after her 3 lucentis injections, RS stated there was alot less inflammation but it made no real difference in her reading ability.
1. How does one guage on a numerical scale if her condition truly worsened
in two years to warrant more injections etc
2. Is Evantis better, equal, inferior to Lucentis for LXT
3. Can LXT actually proceed to something more adverse
4. How can one eye doctor state its macular degeneration while another states no?
5. Can LXT proceed to blindness. Obviously, its not deemed critical as she is no longer eligible to receive free Lucentis
1. The only way to numerically scale whether her condition has truly worsened is by measuring her visual acuity (the ultimate, overall functional effect of the condition on her eye), but the fluorescein angiogram (FA, or dye study test) can demonstrate worsening fluid retention and leakage and an optical coherence tomograph (OCT) scan can show numerically worsened leakage and thickening of the retina, if that's technology that is available to your RS.
2. Avastin (Evantis) is, for all intents and purposes, equal in efficacy, safety to Lucentis when treating macular degeneration (research proven) and by all accounts as equal to Lucentis when used for other conditions such as diabetic macular edema (swelling in the retina due to diabetic retinopathy), but that's not been shown in research studies. I would suspect that Avastin is also comparable to Lucentis for this, but there are no research studies yet to prove this, nor do I suspect any will be done just because of the relative paucity of candidates available to be research subjects for that diesease.
3. I think either PFT or LXT can proceed to choroidal neovascularization (which ultimately is the worst outcome), but in and of themselves, don't otherwise turn into another disease.
4. I think that difference in diagnoses is based on opinion and experience. Unfortunately what is teal to one person is aqua blue to another. I suspect if you went to several more ophthalmologist you would find a few more say macular degeneration and just as many or more side with the other diagnosis.
5. Sure this can proceed to blindness, but I think the preponderence of evidence (and the effect on society) of macular degeneration leading to blindness is just so much more glaringly obvious and health care systems make decisions and allocate dollars based on what diagnoses they feel will do the most good for the most people. Pretty lame way of doing things, but nonetheless, there you go.
The RS had more diagnostic ability and stated its not macular degeneration but LXT
Or when I stated PFT, he said, its the same condition
So whether its either one, how can another state its macular d.
Is this so difficult to delineate between
I am hoping the RS is correct
Her right eye is fine and shows nothing. I read macular d is usually in both eyes
So I am having difficulty pushing my mother in this series of ongoing eye injections
1. Could evantis proof itself more effective physiologically than lucentis or unlikely
2. If an eye got enough anaesthetic - why would it cause a severe prick pain
Is this due to intern error
Do drugs such as Pradaxa or aspirin worsen macular edema or JXT? Meaning they continue to erode the eye with or without lucentis