Macular Pucker surgery...to do or not to do?

[homecrafter]

Hello everyone, I'm needing some shared experiences PLEASE.
Last week I was diagnosed with rather severe Macular Pucker in one eye.  I noticed a decline in vision for several months prior, but thought I had an infection from eye makeup.  Saw a retina specialist yesterday , seeing a second opinion Friday but I am expecting the same news.
The pucker is pulling on the retina and nerves a bit and has made my vision in that one eye 20/200 and no corrective lenses will help at this point.  I can still see light, shapes etc. but just cannot make out letters.  I can live with it like this, but the specialist says the tugging my cause more severe damage so I have nothing to loose by doing the surgery right away for the best chance of any improvment.

That is where I'm having the problem ,,,I am 56 and still lead an active life on the lake with waterskiing etc.  I have never needed surgery or prescriptions and take care of myself with exercise and diet.    
I do not want to enter into a lifestyle of surgeries, infections, potential real dangers with retinal detachment or reoccurance of the pucker...etc etc.  Yes, I know every surgery has risks and I should just suck it up, but the fear of making the wrong decision is stressing me greatly.  The Dr. cannot tell if the pucker stabilized or will cause more damage...so do I just leave "well enough alone here"??

Does anyone out there have a similar experience with Macular Pucker surgery ?  I would appreciate any and all comments !

[Ray T Oyakawa, MD]

You need to have surgery.  I have had macular pucker surgery (in addition to other surgery starting with a retinal detachment) for a vision of 20/200  My vision has recovered to about 20/20 with some distortion.

20/200 is legally blind.  Get this eye fixed.  I have seen patient who have not a surgery in one eye for a correctable problem and years later they develop a problem in the one remaining eye that can not be fixed.  At the time is was too late to fix the problem in the first eye.

Dr. O.

[JodieJ]

At this point you have already lost your depth perception (not great for waterskiing), and things will not improve without surgery.  Definitely get surgery--performed by a retinal specialist who is experienced with this procedure.  And keep in mind that the best visual outcomes are associated with early surgery.  I predict that your surgical experience and recovery will be SO much easier than you are anticipating.

[homecrafter]

I so appreciate your comments as I am having an extremely hard time with this.  I'm wondering also if Macular Pucker ever gets mis-diagnosed and maybe I just have Macular edema which will go away on its own?
Hopeful thinking or are there easily mistaken other diagnosis's that even the retina specialists can get wrong.
I only had the OCT test and seem to be jumping into surgery fast, but the 20/200 within  less than a year concerns me.  Would they know from the OCT and exam if it was some type of cancer instead of Macular Pucker ?

Did your Dr. use a steroid injection during, but at the end of the surgery ?  My Dr. says it's optional because it can cause cataracts I much faster than normal, I believe.  What is the advantage / disadvantage of this steroid into the eye during surgery?   I don't like drugs in general because of side effects, but if something is absolutely in my best interest I don't want to be foolish about it either.  

[JodieJ]

I believe that a macular pucker can be diagnosed by a retinal exam alone.  I think it is extremely unlikely that you were misdiagnosed.  I did not have a steroid injection before or during surgery.

I've had surgery to peel a macular pucker twice.  This is not painful surgery.  I was awake both times and felt no pain at all.  I spent the afternoon following my first surgery at the local multiplex.  My second surgery was done out-of-town, and I was having dinner at a nice restaurant less than 2 hours after leaving the OR.  I flew home the following day.  You could probably return to work the day after surgery if you really wanted to, although your eye might be slightly red and swollen.

You have so much to gain from this surgery.  Please don't postpone it.

[homecrafter]

Hello again, Just got a second opinion on my Macular Pucker.  Apparently there is quite a lot of scar tissue built up over my macula and it's causing traction on the nerves, but MAY or may not have stabilized at 20/200.
Looks like surgery to remove the scar tissue should be done asap.

NEW QUESTION:
This second surgeon suggested doing the cataract lens replacement surgery on that eye the same time as the macular pucker surgery. (even though I only have a slight beginning of cataract)

#1)  Is that too much trauma for the eye all at once ?

#2) He said, (and we've read) that cataracts are almost a guarantee rather soon after this surgery, so if you just do it at the same time you reduce the risk of a second surgery soon afterwards.   That part makes sense, but I was "frozen" in the office and didn't think to ask about all of the downsides to doing the lens replacement at the same time.
Maybe he thinks I won't have that great of an outcome anyways with my macular pucker being so extreme so what would I have to lose ?  

Does anyone have any experience or research on that ??????  Surgery is scheduled with this Dr. next Thursday, so I don't have long to research this, please help.   thank you in advance !!!  

[JodieJ]

Congratulations on your decision to proceed with the pucker surgery!  The practice of doing cataract surgery at the same time is somewhat controversial.  On the "pro" side, you will not have to anticipate having a second eye surgery sometime during the next year or two.  On the "con" side, some surgeons (including Dr. Charles of Memphis who did my second ERM surgery) claim that the final visual outcome is better when the two surgeries are done at different times.

I suspect that there is not much difference in visual outcomes, although I have a personal bias about this issue.  I was ultimately very glad that I didn't have cataract surgery on the same date.  I was really thrilled with the outcome of my cataract surgery.  I attribute my excellent results to my choice of an experienced cataract surgeon, who used multiple formulas to determine the appropriate IOL power for me.  (I had been a high myope with astigmatism, so my health insurance covered the cost of getting my second eye done.)  The time delay between retinal and cataract surgery allowed me to research the issues involved in choosing an IOL and the options available for my new vision.

If you want more input about your question, try posting it as a separate thread on both eye care forums.  

[rita67401]

Please keep us posted on your surgery outcome.  I was diagonsed with exactly the same thing just this week.  I too thought the problem was caused by getting makeup in my eye but found it is a severe macular pucker in my right eye.  My vision is now very blurry and distored.  The doctor asked me to wait six weeks because sometimes the membrane will disappear on its own. He did say the surgery will restore the vision but it will take 4to 6 months before it returns to normal. He went on to say that developing a catarac is guaranteed.  If this isn't better in six weeks,I'm going to opt for the surgery.

[Traveler5]

Jodie, I'm very curious about your macular pucker surgeries and the after surgery healing process.  I too have just been diagnosed with a macular pucker in both eyes and the retina specialist says that after surgery I would need to keep my head face down for 12 days....and even then he could not guarantee it would fix my problem.  My regular eye Dr. is now preparing me for gas permeable contact lenses in both eyes to correct the problem.  How long ago did you have surgery and how are you still doing?  

[JodieJ]

Macular pucker surgery does not involve face down posturing.  I'd strongly suggest that you get a second opinion about surgery from a different retinal specialist.  The distortion caused by a macular pucker cannot be corrected by gas permeable contacts.

As far as my own situation, I have 20/20 vision in my affected eye, with some very mild distortion.  I'm not aware of this distortion when using both eyes together.  The image size in my affected eye is larger in the foveal area than the image size in my other eye.  

[tinaeyes]

I was also diagnosed with macular pucker recently in my left eye.I can see how distorted my vision has become lately in that one eye. The right eye also has something such as a retinal hole although they consider that minor and haven't recommended anything for that eye.  If I considered surgery for the left eye, it wouldn't be for the vision, rather, I have a really bad pain behind my left eye. I have been to 2 retina specialists, and 3 Ophthalmologists, no one can tell me where my headache and pain is coming from.  After I get up in the morning, after a while, the pain starts and it feels really weird, as if the left eye is getting plunged into my face or something.  At first I thought the pain was in the middle behind my eyes, but it is actually coming from the left eye.  did any of you have pain/discomfort with your pucker?  I also have a foveal cyst in that left eye.  I am not sure what to do.  If  5 doctors don't know what is wrong with me, I am so scared and worried.  This discomfort and pain is really very very bad, I cannot live with this anymore.  Please someone help me.  where is this pain coming from?  I had a brain MRI pm 4/11/12, there was no tumor or anything at that time.  A tumor could not develop so quickly after the MRI, could it?  Someone please help me.  Tomorrow, I am going back to the Opth. I have had so many dialations and so many lights in my eye since this all began on 7/18/12.  My first visit with the doc was in Nov. 2011, when I had used strivectin cream on my face and my eyes had swelled.  And I had gone to him just to make sure everything was okay, which he said was okay, but apparently he had noticed the pucker, didn't say anything at that time, wanted to see me back in 6 months. he kept this to himself.  In 6 month visit, he sent me to a specialist who diagnosed me with the pucker and wanted to do surgery.  I was and am in shock.  Even then I had no pain.  but during these checkups the pain has developed.  Could it be the drops they have been putting into my eyes or the many many lights that each one has used on me?

[Luvtoski]

's Hello Tina,  

I share your "shock" with the surprise diagnosis of Macular Pucker.  I am only 57, never had any health issues, always 20/20 vision until mid 40's where I needed reading glasses.  Last year out of no where on my annual eye exam the Opth. said I had a Macular Pucker and should go see a Retina Sp.

I went to 4 Retina Specialists and had become 20/200 in that eye BUT NO PAIN.  All 4 said I needed Vitrectomy/Membrane peel to stand a chance of any reasonable vision again.  I never had surgery in my life, gave this careful thought and research and had the surgery May 2011. They hope to gain about 1/2 of your vision back post surgery=20/100.  I went to 20/60 first week post surgery but developed a cataract the first 3 months so declined again fast.  

I had cataract surgery March 2012 and am now 20/40 in that eye, but with some retina damage to the macular area=a blank spot which will be permanent. Still MUCH better than before surgeries and glad I had them.

Back to your question,    Did  I feel any Pain in my eye before or after surgery ?  Not really...but I do feel that the stress of all of this and also all the eye drops (although necessary for the Retina spec. to diagnose) contributes to heightened awareness of the affected area.
Please keep in mind that I am not a Doctor, just someone who has gone thru the surgery and researched it extensively.

I also learned thru this process that the Doctors are sometimes reluctant to give a diagnosis or admit that their drops or lights might cause a problem, and honestly they probably don't really know because they never take the time to connect the dots when patients complain.

Are you reviewing your OCT tests with these Doctors ?

[mossymil]

I had detached retina surgery 3 months ago, now have a large cataract in that eye and macular pucker. My vision is distorted and fuzzy. I have contacts in now and need readers for close vision. But main problem is I am so dizzy all the time and am wondering if its from this macular wrinkle and my contacts not being perfect in my left eye.

[JohnHaganMD]

Either can be a cause of the problem. Blurred vision in the eye, the eye having a markedly different refractive error than the other eye and distortion (metamorphopsia) due to the macular pucker.  Cataract is relatively easy to treat.  Discuss with your retina surgeon

[tinaeyes]

Luvtoski, thanks so much for your reply to my post.  I really appreciate it.  I have just come back from the Opth. and all he said was that at my last visit he had found that I had dry eyes but today he said, there was hardly any dry eyes.  He told me to use a gel at night, and gave me Refresh which he said is the best. He said my vision with my new progressive lens is 20/20, although before the glasses, it was around 20/50.  He said to me that dry eyes does give a headache.  He said he can usually tell if the pain is due to a tumor but in my case it is not, he said.  At the last visit, he asked me whether I used a CPAP machine for sleep disorder.  I said yes.  He said to continue using it, as him being a glaucoma specialist, he said he said definitely noticed that when patients don't use their CPAP machine, they develop glaucoma.  I am so thankful to have found this young 36 yr. old bright doctor.  I wasn't using the CPAP due to inconvenience but now I will every night, as glaucoma would be a death sentence for me.  He told me to wear my progressive lens and try to get used to it.  And also to use the gel so that my eyes don't dry out.  He will use a punctal plug next time, if things don't improve.  I hope he is right about my diagnosis.  He used the numbing drops to check the eye pressure, which numbs out the eyes.  Right now I have lots of pain and discomfort due to the drops he used. It wasn't dialated though.  I will try to lubricate every 4 hours from now on, which I wasn't doing exactly.  He also wants me to take 5 minutes away from computer screen and seriously blink so as to lubricate my eyes.  He said I should not be considering surgery as I have good vision with the glasses, and he said macular pucker sometimes resolves on its own.  The one thing which is scaring, freaking me out is that he says, that I maybe a glaucoma "suspect".  In Feb. next year, he plans to check with a machine ($45,000 new top of the art, new technology) machine he has in his new office.  I will get it checked next year for glocauma.  I will take another look at my OCT test, I have given my entire chart to the new Opth. and each one of them have all my chart and notes, and the OCT.  Is there anything that I can understand on the OCT? I am so sorry that you developed a cataract after having 20/60 vision, but am so very happy to hear that you now have 20/40 vision.  That should be almost normal.  Having that blank spot must be irritating, but we all have to live with something, unfortunately.  I have distortions from the pucker, and the retina sp. will see me again and test my vision in Nov. 2012.  We will see then whether my vision is improving or going worse.  Thanks so much again and wishing you much luck with your situation.

[Luvtoski]

Thanks for your reply and all the details from your Opth...I truly believe it is extremely helpful for all that read these forums to hear specific Dr. opinions and advice.
Two things I could add for dry eye...especially in the winter months when the heat is turned on in our homes, run a humidifier in the room you spend a lot of time in and in your bedroom at night.  Humidity really helps with dry eye.  Also, I take flaxoil daily...a tablespoon morning and night.  I use a good quality flaxoil by Barleans .  You can find it on line or in the heath dept. at Fred Meyer and many other places. It needs to be refrigerated, but it is great quality flaxoil which is not only good for dry eye but skin, etc.  Fish oil also good.

In regards to the OCT test, I like to actually SEE what the Docs are talking about.  They should be able to show you the Macular Pucker, and if your Retina is swollen or distorted.  That way you can compare from visit to visit to see if anything is improving or declining.  Some people don't wish to be as involved with the details of their diagnosis, but I am one of those that want all the information and details.

Again, good luck to you and please keep us posted !!!!  

[ginnydee]

Thank you for this post.  I was just recently diagnosed with Macular Pucker.  At first I was given drops but they are not doing anything and I go back to the eye doctor tomorrow and he will refer me to the surgeon. I was reading up on Macular Pucker surgery and a couple of sites talked about face down recovery.  That was frightening.  I am so happy to have come across your post that it did NOT require face down recovery.  You have put my mind at ease.

[ginnydee]

Thank you for this post.  I was just recently diagnosed with Macular Pucker.  At first I was given drops but they are not doing anything and I go back to the eye doctor tomorrow and he will refer me to the surgeon. I was reading up on Macular Pucker surgery and a couple of sites talked about face down recovery.  That was frightening.  I am so happy to have come across your post that it did NOT require face down recovery.  You have put my mind at ease.

[Shareen848]

I was diagnosed with macular pucker yesterday by retina specialist (previously diagnosed by optometrist and general opthamologist.  my vision in the R eye is 20/400.  after extensive research, I have decided to have this surgery and would appreciate hearing from those who have already had the surgery.

thanks,
Shareen

[Luvtoski]

It's been about 2 years since my ERM/Vitrectomy surgery.  I was 20/200 prior to surgery and ended up about 20/40 ish after ERM surgery with following cataract surgery of which the ERM membrane peel surgery caused.

However, the 20/40 isn't a perfect 20/40.  I am left with a blank spot near the center of that eye.  Most likely from the scar tissue tugging at the retina,  the mechanical peeling of the membrane, the residual swelling (seen on OCT tests) that looks like is permanent, and the reorganization of my photoreceptors in the macula (central vision) area.

All in all I felt the surgery was needed and I had nothing to lose with everything to gain.  The severe scar tissue I had does NOT go away on its own, so I either lived with it or "went for it".  I got 4 Retina Specialist opinions before I decided whom I trusted to do the surgery.  The surgery itself is a breeze from a "pain" or discomfort perspective...but you basically get one shot at it and will live with the results forever, so choose a surgeon you trust.

Good luck and please keep us posted.

Also, RITA...did you ever have your surgery?  

[stevenstlou]

what is the recovery like?

[rita67401]

I had the surgery two years ago. Dr. Steve Charles in Memphis was the surgeon.  My vision prior to the surgery in my right eye was about 20/70. I was advised a cataract would form within 6 months after the surgery. It did and I had it removed by my local doctor.  I now have 20/20 vision in the operated eye.  I don't even wear glasses and I'm 69 years old.  
I now have a lesser macular pucker in my left eye. I am going to have it removed August 12.  I'm hoping for the same results as I had with the right eye.  I am having Dr. Charles do the surgery again this time too. I will post again after the surgery.

[Bellena2204]

I was diagnosed with a macular pucker in my L eye a few months ago. I have a completely blind/grey spot in the center of my vision. They wanted to do surgery right away, but I wanted to research and discuss this with my family.

Since there were many risks and no guarantees, I was reluctant to opt for surgery, but I now see (especially after reading this forum) that my vision is not going to ever get better without the surgery, so it's either live with the impaired vision or go for it. I have decided to go for it.

I thank all of the posters on this forum, especially those who come back to tell their stories after surgery, for the knowledge and insight I've gained here. I will keep you posted as I progress in this procedure

[Luvtoski]

You sound a lot like me...I went for it too because there were no other options.  About all you have control of at this point is to do your research on the surgeons you are considering for the Macular Pucker-membrane removal/Vitrectomy surgery.  I went to 4 Retina Specialists before I decided who I wanted to perform my surgery.  I asked a lot of questions and did a great deal of reading these forums, etc. ahead.
I won't repeat my long story, but 2 years post retina surgery I can see well enough to live out my life happily ...that is as long as my remaining "good eye" stays good.
I went from 20/20 in both eyes to 20/200 in my Macular Pucker in within a few months...never figured out why the scar tissue formed.
Post surgery I quickly formed a cataract and then had that removed...I am now around 20/40 ish on the eye chart...but just like you I have that darn blank/grey spot near the center of my vision.  I believe that my retina and it's photoreceptors were just too damaged either from the scar tissue pulling on it or from something during surgery.  If you watched some surgery videos on YouTube (and you should) you will see how delicate of a surgery this membrane peel is.
Keep us posted !  Best of luck to you.  

[Bellena2204]

Thank you for your response to my post.

I have found a doctor that I trust - he's about 1.5 hours away, and there is a satellite office in my town for the follow-ups. I'm still a little nervous about the surgery. Yes, I did watch the you tube video of the surgery and appreciate how delicate this surgery is.

The thing is that I may be having the same thing occurring in my R eye. While doing my research, I found an Amsler grid online that you can check for distortions. I already knew what to expect from my L eye, but when I checked my "good" eye, I have a small amount of distortion at the lower right part of the grid. I have not had this eye examined for a macular pucker yet - which I most certainly will do now.

So I'm really hoping to regain some significant sight in my L eye, just in case.

[CrownSouth]

My retina detached 2 1/2 years ago - not surprising - I was high risk myopic (-10 contacts) that had been corrected by lasik 15 years ago.  15 years of a medical miracle for me.  

Usual treatment - buckle, vitrectomy, cataract surgery, steroid drops, then steroid shot.  Always knew there was something else going on - the distortion of everything I barely see in left eye.  Diagnosed before the drops and shot  as macular pucker.

Have had same retinal specialist the entire time.  One of the most respected in Atlanta.  He has always been very conservative - wanting retina to get more well attached and eye to try and heal itself before suggesting any surgery.

Feel like I am running out of options and the blurred vision in the one eye us debilitating.  Feel like I am running out of options.  He has suggested surgery in August.  

Wondering if I should seek second or third opinion before I do this or not.

Thankful for this board and advice other have shared here.

[Sami93]

Hello. I am from Romania. My name is Sami. I am 20 years old and I suffered from a hemorrhage between the macula and the membrane of the vitreous of my left eye. Blood was trapped there for almost 2 weeks (the time it took for the blurry spot not to be red anymore). During this time, the doctor prescribed me Vitamin C (1g / day), other pills called "Tarosin" (a combination of Vitamin C and flavonoids for stronger blood vessels) and fluorometholone eye drops to prevent inflammation of the eye.

After those two weeks, big distortions appeared in the same left eye and I had a blank spot in the center of my vision ( I couldn't read anything with my left eye for example).

Then, after two more weeks, meaning 4 weeks after the incident happened, the distortions were diminishing and the blank spot in the middle was getting smaller and I started to be able to read again with my left eye.

In the same 4th week, I went to my ophthalmologist and she told me that the blood had been absorbed from over the macula. She told me to take 2 drops of bromfenac per day and 3 drops of fluormetholone.

Now I am in my 9th week after the bleeding and I will soon go for a check at my ophthalmologist. I no longer have any blank spot in my vision. If I force myself to focus on something detailed such as a little letter on the screen of my pc, I can find a bit of distortion; else, I see no distortions anymore. The only thing that annoys me are some floaters that recently appeared.

My central vision is sort of blurry and I suspect a macular pucker has formed. I hope my doctor will says I don't need a surgery for it and that it will not damage the macula (again, I repeat, distortions gone away like 90%). I hope that in the future, an alternative to vitrectomy and the peeling of the membrane will exist because I want i don't want the formation of a cataract at such an early age. I found something about a medicine called "Jetrea" which cures macular holes and vitreomacular traction without causing cataract (I don't know if this traction thing is a synonym with pucker, but if it is, that is some great news).

The cause of the bleeding over the macula may be many.
I am 1.75m tall. 9 weeks ago I was 117kg. I had times when my blood pressure was 15/11 when sitting on the couch watching TV; imagine how much it would be when I did physical effort. When I was angry, I used to punch my head repeatedly and strongly to relax myself.

Now, after 9 weeks, I went down to 103kg in weight and started running in the park. I changed my lifestyle and my mood (sort of calmer and a bit sad). I repent for being stupid all these years and not losing weight earlier, I repent for not checking my blood pressure earlier. I repent for punching my head.

I searched the internet for similar stories as mine but didn't find anything; I guess not many young people suffer from what I did.

After I go to have a check with my ophthalmologist, I will write here again.

If you want to contact me, my email is ***@****.