CRVO Update

Like I posted before, I got CRVO (Central Retinal Vein Occlusion), or Papillophlebitis as it is sometimes known, in my right eye. I had a followup visit with my retina specialist this week.

I had already noticed that the dark cotton wool spots I was seeing earlier were almost gone. The doctor confirmed that quite a lot of the retinal hemorrhage is gone now. In fact, he was surprised at the speed of recovery and that my central vision was never affected.

Even though my bloodwork was normal, he advised me to see a specialist, a hematologist I hear they are called, to do more tests than the dozen blood tests he has already done. There goes a liter of my blood.

I also have the impression that my doctor has not had much experience retinal vein occlusions in healthy young adults. I think it is fairly rare in that case.

By Zack

Dad, gadget guy, bookworm, political animal, global nomad, cyclist, hiker, tennis player, photographer

45 comments

  3. I can relate. I have macular degeneration in my left eye, which my ophthalmologist calls “idiopathic,” which just means that nobody knows why it happened to me in my early 30s. It is the leading cause of blindness among seniors.

  7. Zack,
    You are one lucky guy!Do you know how serious CRVO is.You are incredibly blessed to regain your vision quickly-particularly without any loss of central vision(due to damage to the macula).
    I have been to Dr.Weiss in Florida-I live in Ireland-yes that country beside England not any part of Florida.Whilst I have gained some benefit I am doubtful if I can regain my vision totally.
    Good luck to you and yes follow up on the blood work etc.It will probably be inconclusive-it was for me.I was a healthy male in my mid-40s when it struck in 2002.No explanation either!

    Ben Daly,
    Dublin,
    Ireland.

  9. Hi Zack,

    Hope you are better now with very good vision. I am 28 years old and getting on with life. One morning I got up and my one eye was blurred. To make the story short, I went to see an eye specialist PDQ in London where I live, and she diagnosed CRVO. All the comments I’ve read here in your site are the same with what she said. It’s been nearly 2 months now and my eye’s no better. Still, my faith in God is strong and I hope this eye will improve it’s vision again. Tomorrow, I will go the the eye hospital first thing in the morning because I can now see floaters whereas before it was just blurred.

    Good luck!

  10. rab: Hope you get better.

    The hemorrhage in my eye is almost completely gone now and there was no effect on my eyesight.

    In my case, floaters were the first thing I noticed. Later they turned into a dark web. But that’s been gone for a couple of months now.

  11. Hello Mr Dr.
    I am glad to can find you to send E.mail for help me .
    I am 24 years old and live in Iran . 1 year ago I became seek and was in hospital for 90 days.
    my problem is : PT and PTT out of renng . C . B . C diff : W.B .C 2000 PLT :90000
    hematury and other problems .
    Ibecame chemicall trophy by andoxan and use the methylprednisolon IV
    Now Hematologist in Iran could not diagnose for me.
    The result of this prablem :bleeding Kidneys and other bleeding.
    PT test of me not control . and you know internal bleeding is dangrous .
    Would you please help me . I am young yet and I like my life.
    could I come England for work up ?
    Tanke you for your helping .
    Goodby.
    a_nazari66@yahoo.com

  13. My wife has CRVO in her right eye since 4 months.Initially her vision was blurred but later she started noticing dark floating spots.We went to see doctor in Baltimore U.S.A and he advised not to do anything at present since left eye is fine at this time.Any procedure to improve the right eye might affect the right eye so we decided to follow up in every 2 months , but all of sudden one morning she had headache and complained about some sharp feeling to her both eyes same like we feel while cutting onions and now she feels more pressure from both eyes to see any object.We are suspecting that her second eye also got affected.Looks like doctors also do not have enought information on this problem and they are not very confident about the cure.Only god knows whats happening.Please provide me the useful information as we are in totally dark , not able to figure out what to do in such case.

    1. How did you wife make out? I was recently diagnosed and my doctor gave me an injection of Avasin. It seems to be helping.

  14. Vishal: Sorry to hear about your wife’s case.

    I would suggest that you find a good retina specialist who might be able to suggest some treatment. Good luck.

  15. I will be traveling to the UK at the end of April until the end of May, 2005. I need the name and phone number of a good retinal specialist in London and Cornwall, if possible. Presently, my vitreous is detaching from my retina. My eye surgeon (in the U.S.A.) has told me that there are excellent opthalmologists on England if I need to see one. If you could supply me with a name of a retinal specialist/surgeon, that would be most welcome.

    Thank you

  17. I was diagnosed with a crvo after being punched in the eye. Sometimes I wonder if this really is the cause. I am 42 in good health and have had tons of blood work done to rule out anything else. My vision is blurred but the thing that worries me is one day the vision seems real good and I can see pretty normal then the next day it is blurred again.

    Denise

  19. Hi,
    Like you I have CRVO but in in left eye. Almost no sight in that eye (around 2%). I am under a wonderful specialists and after almost two years of monthly visits, has no decided to replace the lense in my “good” eye. My sight in the “good” eye is down to 50% so anything that will improve my vision is better then nothing. I have recently become a grandmother (at long last) and have difficulty in seeing my grandson, so hopefully the operation will change all of this. I never realised how important sight was until I lost it. I thank God each day that I at least can still see the sun rise and set. I look forward to receiving comments from anybody who has had their lens replaced and knowing how long it took to regain full vision abain.

  21. hello,I have a sclerodermia about two years.I use andoxan for five month,please guide me about possible side effect.

  23. CRVO

    If you were wondering why I ranted about God or why my family is pressuring me to not spend so much time on the computer, you should really get a life. grin. I guess I am going to tell you…

  24. Just had CVRO diagnosed. Same experience as above – woke up one morning etc etc. The problem is in my left eye. I am 34 years old and apparantly this is somethig which occurs in older people (I was told 60+). I am completely devastated. My left eye is a complete blur. I would give ANYTHING to have my sight back. My consulant has jsut advised that there is nothing to do. No treatment. Also, my other eye may go the same way. I can’t express how completely depressed it’s made me.
    Does anyonte know of any treatment. So far i have been advised to take asporin and drink water. I am the healthiest 34yr old I know. Never drink, never smoke, gym 3 times a week.
    There must be someome somewhere who can treat this – Russia, China, somewhere.
    Any comment/ideas are welcome. justinroberts007@hotmail.com

  25. Hello…I am a 66 y/o white male who developed CRVO in my left eye about a month ago. Recently I also developed some new floaters and peripheral flashers as I am very near sighted, and realize this is due to tugging on the retina since the vitreous tends to shrink as we get older. I still have vision in my left eye, but the acuity and clarity is not there, and my CRVO seems to be getting worse. I have been told that my eye is evolving and that it may take up to 90 days until it either gets better, stays the same, or gets worse. My vision has not returned to normal since this happened about a month ago. There is a Dr. Weiss in southern Florida who does retinal surgery and injects Tpa into the branches of the central retinal vein to dissolve the clot, and as far as I know, he is the only Dr. who offers this kind of treatment for CRVO. However, it is not without it’s possible complications which can be worse than the original CRVO, and can lead to retinal tears, detachment and blindness. He has a five page website, but he does not indicate the possible complication risk percentage, nor does he talk about the possible complications which can be devastating. I called down there and spoke to someone, but he did not tell me much more than what was on the web site, and I still don’t know anything about the possible complications, so I am going to write Dr. Weiss directly with my questions and concerns with the hope that he will reply, before investing at least 15 grand that may help, or may not, and could make the CRVO worse. You can find his website by punching in CRVO, and his is on top. Look before you leap though, because once it’s done, it’s done, and there are risks of complications that could make it worse. Find a reputable and good eye doctor and surgeon who will take the time to thoroughly check you out and take the time to explain everything to you, as you deserve to have all of your questions and concerns answered. Chances are he will refer you to a good retinal specialist and you wil go from there. I know this because I am a medical professional and have the good fortune of having a good eye doctor and retinal specialist in northern Michigan. Please contact me if you might have further questions that I could possibly help you with. Take care and good luck……Ray.

  27. Friends—-hello…
    Well, I must say that Zack’s description of CRVO and the relative significance of ischemic- vs nonischemic-CRVO is a right-on condensation of Dr Weiss’ entries on the web. I’d also advise reading Dr Hayreh at U of Iowa, who also comes up if you Google CRVO.
    Personally, I became an “eye patient” on 5 Nov 07, at age 69, with what seemed to be a sudden onset of astigmatism in my right eye, being a sort of “squiggle” in horizontal lines in my central visual field.
    The next day there was a darkening and a distortion (sort of like a “twisting”) of whatever was in my direct focus. Day 3 presented a blind spot at dead center, with an apparent size like unto my thumbnail at full arm extension. At that time I made an appointment with my optomologist (the man who had two weeks previously examined me for new glasses), and was given a date a week out. By the time of that next exam, ten days since first symptom, the blind spot was becoming translucent, although it had doubled in apparent size. Also, everything within the spot had a definite blue look to it. Dr took some looks, did tests confirming that my peripheral vision was in good order, dilated, and photographed the retina. Then set me up to see the specialist in two weeks. During that waiting time, the “translucency” became “clearer”, and my central acuity improved a bit. The specialist’s diagnosis was that I had an occlusion and his recommendation was that I should see him again in a couple of months.
    My own reading on the web gives me the notion that this is a nonischemic CRVO, with good chances that it will correct itself over the next few weeks or months. I believe the “blue shift” has to do with the swelling of the CRV. I think the swelling has “lifted” the fovea, thereby tilting the cones out of their normal configuration. The concurrent tilting of the rods would account for the apparent “astigmatic” effects.
    As I write this it has been two weeks since I saw the specialist, and my primary care physician has not yet received a copy of the specialists report. Never the less, I feel quite fortunate, as this situation seems to be less threatening as time progresses.
    I believe the blockage of the CRV is partial and will resolve without surgical intervention. It’s kind of a fluke that it even happened at all, since I, as an a-fib patient have been on blood-thinners for several years and have kept a close eye on my pro-time tests.
    Anyway,I hope that the level of detail I’ve put into this post will be helpful and maybe even encouraging to some of you out there who didn’t ever want to have to read this. Good luck to all!
    Bob

  28. Is there anyone here who ever tried “Retnitin” Retnitin.com that says “An Amazing 100% Guaranteed Treatment for Retinal Vein Occlusion!” Are there any testimonials from this site?

  29. 43 yr old white male.
    CRVO 28/10/07. Partial blockage of right eye became total blockage 3/4 weeks later.

    Perfect health none smoker etc, although high intake of liquirice which seems to be a possible risk factor in itself.

    Vision no better than than top line of eye chart. Floaters now present which initially give some hope of something happening but now just a pain in arse!

    Under monthly review with appoiuntment with blood doctor next week.

    May give this Retnitin a go but would be nice a hear some 3rd party feedback.

    Regards all.

  32. MAXIDEX WARNING

    I had eye surgery and in the post0op pack was MAXIDEX drops by ALCON LABS.

    Two days later I was BLIND

    Use Google and enter EPOCRATES MAXIDEX to verify

  33. Lou: Thanks for that link.

    WEL: I would always suggest discussing any medication and treatment plans with a doctor.

  34. Zack, we live in the greater Kansas City area. The last weekend in July 2009, my 17 year old son woke up without any vision in his left eye…blurry, patches of gray, vision at 20/800. It has been several weeks now and he has seen over 42 specialists…The results – the docs say he has Factor V Leiden, and that caused clotting in the left eye. He has had 20 days of steroids by mouth, and one steroid injection (triesence) in his left eye. We began accupuncture a week ago, and we have seen the most dramatic improvement in the last few days…He is still unable to see, (has peripherals in movement) and is 20/400 with his eye appearing to lessen in hemorraging, swelling and inflammation. Now the retina apparently is detaching. We are increasing accupuncture (3 to the forehead, 2 by the eyes, 2 in the neck and 4 in the toes/feet). We need to dry up the serous (fluid) under the retina to avoid surgery for complete retina detachment. How are YOU doing now that you are in year 5 of your losing your vision to a CRVO? Do you have any suggestions on what you wished you would have done differently?

  36. Zack I’m glad your eye recovered. We have good news for any of the others who’ve contacted you with CRVO’s REGARDLESS of what age they’ve unfortunately dealt with them.
    There is a series of 3 triesence steroid injections that can be done over a 12 month period as the eye progresses. September 2009 University of Wisconsin, Madison has published a study through Dr. Michael Ip, documenting vision improvement in CRVO’s. You don’t have to lose the second eye if you continue the baby aspirin for blood clot thinning but also the steroid can continue to clear those veins of blockage. We are having continued success with also using accupuncture. From 20/800 to now 20/150 in peripherals. Any folks out there needing good doctors – check Dr. Abraham Poulose or Dr. Gritz at the Sabates Center in GKC, Childrens Mercy, Vision Foundation. Zack thanks for this site for folks to share.

  37. Hi Zach, Hi Tammy,

    I’m a 47 year old military soldier who accidently hit his left eye with a bungee cord in November 2009. 2 days later all was blurry and I couldn’t see that well from my left eye. I was diagnosed with CRVO. I dont drink, smoke or have diabetes. My ophtalmologist decided to treat me with a combo injection of Avastin and Triesence (coritsolsteroid) at the 0.1mcg dosis in order to get Macular Edema (ME) under control, which means that the Macula of my eye was swollen and to try to clear the blod clot which was clogging the Central Retinal Vein. It took 2 combo injections in 2 month to get the Macula Edema to go away. So my Macula is not swollen any more. If the Macula stays swollen you can lose your retina and be permanently blind. My doctor has now observed me for 2 months with no treatment. I will go for my 5th visit in 2 more days. The injections have helped me see better, but I noticed that they do raise my blood pressure and pressure in my eye. My doctor has not suggested that I start taking baby aspirins which is what Tammy Potts is saying in order to protect the second eye from possibly getting CRVO. I notice that with the injections my sight improved and went from 20/800 to 20/40. I also noticed the weirdest thing, that when I look at objects with my head tilted horizontally left or right I can see things better. My doctor at first thought I was crazy but then confirmed it with vision tests. She then noticed that the woolly clouds that I have in my eyes would move when I tilted my head therefore clearing enough room in the eye for me to see a bit better and even read things that I could not read when I looked at them straight on.
    I hope this helps somebody else out there suffering from CRVO.

    Roberto

    1. I’m 39 and have been diagnosed with CRVO and protein S deficiency. I’m on warfin and asperin. 1 month ago I had to get an injection of Avastin which seem to help my CRVO. However, yesterday my eye started bleeding again. I’m wondering about the long term expectations of this condition. Any feedback would be appreciated!

  38. I just wanted to repeat Lou’s post above suggesting a more active site. When I had my occlusion in June 2008 I read the accounts here with great interest but, noting that there were no recent updates, joined the other forum.

    Tammy and Roberto — your insights would be much appreciated on http://groups.google.com/group/crvo-support .

    Best of luck —

    Carol (London)

  39. I have had an ischemic CRVO of my left eye for the past three years now. I have no visual acuity in my left eye, altho I have slightly better acuity peripherally than centrally. I have had many surgical procedures, eye injections, and photocoagulation all to no avail. I have also developed narrow angle glaucoma for which I have a plastic tube shunt in the eye that seems to be working well. I also have a silicone oil bubble in the eye to prevent the micro hemorrhage that often occurs with glaucoma and CRVO. I use pressure reducing eye drops twice a day, take a baby aspirin (81 mg.) every morning, and a 1000 mg. cholesterol free fish oil capsule twice a day to keep my blood thin so this won’t happen in my good right eye. I have a great retinal specialist who is optimistic that a cure will be found within the next five years, and that retinal stem cell implant will be available which is the only sure cure for this condition. I have seen Dr. Weiss’s track record in Florida and I am not impressed. I believe he preys on those who want a quick fix of this condition and if that were the case everyone would be using his procedure, and that is not the case. There are too many variables and possible complications that he does not address, which could make the condition even worse. But he is getting rich, and to many doctors that is the only thing that seems to matter. My advice for anyone with this condition is to find yourself a good and reputable retinal specialist who will take the time to explain everything to you and try to be patient. Be thankful if you still have one good eye as many people do not.

  40. I am 46 year old female who noticed about 10 days ago that when I closed my right eye, I had many blank spaces in my vision in the central and upper quadrant, the vision I had was severely skewed and the size of objects were smaller. Almost like looking through the back end of a kaleidoscope. Since I had back surgery scheduled 2 days after noticing this I chose to ignore it and waited until the following week. Next thing I know I am having laser surgery to repair the bleed in my eye and find out that I may never regain my sight in that eye, The diagnosis CRVO. By the time I went to the specialist there was so much blood built up in the eye that he was surprised that my retina had not detached. This is day 3 after the laser surgery and yesterday my vision had returned approximately to 30% of normal. Today it is only 20%. My vision is very dark and blurry and only the largest of shapes can be determined. I return in 1 month and he says he may have to do a second laser in order to correct it to the best it is going to get. Any thoughts from you others that have gone through this? Is it normal that the vision comes and goes like this following the initial treatment? Obviously I am quite concerned and am so glad to have found this site.

  41. Hi there fellow sufferer of CRVO. I woke up on May 1st and noticed that everything looked strange. My blinds were wavy, window panes were wavy and most straight lines were wavy or melted looking. I immediately made an appointment at The Joslin Clinic in Brookline, MA (Boston area.) The retinologist diagnosed it as CRVO immediately. He told me there is no cure but there is a new treatment which may help. He said I could have an injection of a new drug that is experimental and that I could only have it for up; to two years. Then, I would have to stop as it will damage the retina in time. Since I am already legally blind in my left eye, I anxiously signed up for the treatment. Today, I had my third shot in my right eye and was told by the specilaist that my eye was greatly improved and drainage was much greater now. I went from a reading of 697 to 631 to 357. 250 is the normal level. It is a measure of the fluid pressure inside the eye. My vision is greatly improved in my right eye. He said if this keeps up I may not need more injections and that they will monitor my eye routinely in the future. Wish everyone with CRVO lived in Boston or a city with this treatment available. There are only a few places where it is on hand for treatment. Thanks for reading this and hope it gives hope to someone out there. God Bless!

    1. How are things going for you? I recently had the same injection and am looking for feedback. Thanks!

      1. Had a branch venous occlusion 20 years ago which gave me a bleed 3 years ago after a fall and required a vitrectomy now treated with Azopt( getting much better -oedema now gone and pressure coming down)–However my good eye with excellent close vision suffered a non ischaemic central vein occlusion Xmas 2011 with loss of close vision so could not read large newsprint –had a retinal injection of Lucentis(only just licensed in Scotland ) 4 weeks ago and within 6 days my close vision was back and improving daily –going for 2nd injection on 13/02/12–keep fingers cross -now trying cinnamon and rutin at home to strengthen capillaries

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