Medical Forum / Diseases and Disorders / Glaucoma / February 2004
Young Person Getting a Trabeculectomy
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jeffery - 03 Nov 2003 19:47 GMT Hello, I will make this short, so it's not to overwhelming to read. I am a 24yr old male, and I was diagnosed 16yrs ago with glaucoma. Only in the last 2-3 years has there been damage, and it has been significant. Currently, I am taking Timolol, Alphagan, and Xalatan, and my pressure are still surfing around 22-24, and they are not stable. I have tried, Lumigan, and I've also used Cosopt, and the Neptazane. Although the Neptazane achieved results of 19 (good), I got very sick, within a couple weeks and had to quit using the drug.
I have had SLT in both eyes in the last 6 months, and there appears to be no change of significance. At this point, I've lost about 33% of my right eye, and about 7-10% of the left. The left is not that bad in comparison.
My doctor(s) feel that the best solution is a Trab. (right eye). Of course I am nervous, and I am wondering if there are any other young peoples that have had this surgery, and what their outcome/experience was. My understanding is that younger people heal differently, and more aggressively, however I can't seem to find any "data" to back that statement up.
What experience have others had? I don't know what to do, as I will be blind by 30 at the rate I am loosing vision.
Much appreciated.
MC - 03 Nov 2003 19:55 GMT > Hello, > I will make this short, so it's not to overwhelming to read. I am a [quoted text clipped - 22 lines] > > Much appreciated. Can't help you with direct (or even indirect experience) but I can offer a word of support and encouragement.
By the way you may find some useful info at the glaucoma mailing list at Yahoo. Go to Yahoo and search around -- I'm on the list but I can't remember quite how I got there!
dhg2001 - 03 Nov 2003 21:44 GMT > Hello, > I will make this short, so it's not to overwhelming to read. I am a [quoted text clipped - 22 lines] > > Much appreciated. Hi Jeffery,
I am 28 and I have had glaucoma pretty much from the time I was born. When I was about your age, I was taking Alphagan, Betagan, Xalatan, and Neptazane, and yet my pressure kept going up. The doctor did a trab, but a few months later the pressure came back up again. My doctor also told me that young people tended to heal quicker which presents a problem with this type of surgery. Eventually, the doctor put a drainage tube in my eye to lower the pressure.
When I first read your message and questions I was kind of hesitant to respond because this procedure didn't seen to work for me. But I think you deserve an honest answer to your questions. Also, keep in mind two things, 1). Not everyone will react the same way to certain medicines or medical procedures, and 2) As you state in your message you will probably lose your sight if you do nothing. I am not a doctor, but my advice would be to go forward. Also, you can always get a second opinion, of course.
Dan
Earle Jones - 04 Nov 2003 01:08 GMT > Hello, > I will make this short, so it's not to overwhelming to read. I am a [quoted text clipped - 22 lines] > > Much appreciated. * Jeffrey: Greetings!
I had very successful trabeculectomies in both eyes about three or four years ago. Since then, my pressures run 16-18 with *no* drops at all.
But -- I am 72 and you are 24. As you know, one of the problems in trab surgery is the re-healing of the lesion. And healing does take place faster in young patients. Talk to your ophthalmologist about what can be done if healing occurs and the trab needs further work. My understanding is they can "needle" the trab to maintain outflow if healing occurs. But this has not been necessary in my case.
There are other alternatives, including the placement of a stent, or small tube, which can accopmlish the same thing as a trab.
Good luck and please keep us posted on your progress.
Best regards,
earle * I am an engineer and not a health-care professional.
John - 04 Nov 2003 15:01 GMT >Hello, >I will make this short, so it's not to overwhelming to read. I am a [quoted text clipped - 22 lines] > >Much appreciated. Most likely, your doctor is advising a trab because he thinks that is the best option. However, as a check find out if he does shunts also. If he does not do shunts that could be a signal for your getting another opinion from someone who does both operations.
.
John
Rick Cohn, M.D. - 05 Nov 2003 00:58 GMT > >Hello, > >I will make this short, so it's not to overwhelming to read. I am a [quoted text clipped - 31 lines] > > John Hi Jeff (and John, and other posters here), It's time for me to add my two cents. I don't have any "data" on trabs in people your age, but studies on congenital glaucoma and trabs in children show a lower success rate due to agressive healing. In a trab, a flap is made in tht sclera, the wall of the eye. In order for this to function, it needs to drain fluid through it to a space beneath the conjunctiva, the skin of the eye. If the flap heals back down gradually, the IOP will rise again. Personally, I prefer a drainage tube implant in younger patients. Tubes don't heal shut (although they can have other problems, like tube malposition, causing damage to the cornea or clogging of the tube by the iris). Also, the IOP response with a tube may not be as brisk as with a well-functioning trab. Therefore, you may still need a drop or two to control your IOP. This is common. Nevertheless, the most important factor here is your youth, and the need to keep you seeing for many more years. Tubes simply last longer. As was mentioned, if your doctor doesn't do tubes, find one who does both (preferably a glaucoma specialist) and ask them their opinion. Good luck. --Rick Cohn, MD Glaucoma Specialist Winter Park, FL
Simon - 04 Nov 2003 22:49 GMT > Hello, > I will make this short, so it's not to overwhelming to read. I am a [quoted text clipped - 22 lines] > > Much appreciated. I had a trab in 1983 when I was 24, because it healed over so quickly (years before 5FU and Mitomycin) it was revised a month later and then kept my pressure in the low teens for 20 years before I had another problem.
After a bleb revision and 2 lots of needling they suggested a shunt tube because I still heal over too quickly. There are issues with those too!
I suggest you discuss with your doctor what the alternatives are and their relative pros&cons before you proceed. A trab is a lot better than going blind! As a youngster you need to consider the long term implications of wha t they suggest.
Good Luck!
Bill484923 - 05 Nov 2003 13:08 GMT I've had trabs in both eyes One disastrous one great. The disaster was ana infection cost me the eye Other the pressures are good and eye is stable. You really have no choice but to have them surgically repaired
Dave - 26 Nov 2003 04:51 GMT > Hello, > I will make this short, so it's not to overwhelming to read. I am a [quoted text clipped - 22 lines] > > Much appreciated. Sounds like surgery is really your only option at this point. I've had many trabs over the years. My last one, when I was 29, was very successful. Fortunately, Mitamycin was around then and appeared to have helped a lot in slowing down the healing process. I'm still on timoptic in that eye, more for psychological reasons than much else, the IOP hangs around 10 without much variation. Its been 9 years since that surgery.
Best of luck to you.
Dave - 26 Nov 2003 17:30 GMT > > What experience have others had? I don't know what to do, as I will be > > blind by 30 at the rate I am loosing vision. > > > > Much appreciated. I also wanted to add, that if you haven't yet, ask your doc how many of these he has personally performed and what percentage of the outcomes he would consider a success. Not all surgeons are created equally and the outcome of the surgery is very dependent on the surgeon performing it. Don't let performing surgery on you be a paid learning oppurtunity for your doctor. Your sight is too precious. If you don't feel comfortable with your current doc doing it, it is very much worth spending the money to travel to another city if necessary to have a more experienced surgeon do it.
Rick Cohn, M.D. - 27 Nov 2003 16:27 GMT > > > What experience have others had? I don't know what to do, as I will be > > > blind by 30 at the rate I am loosing vision. [quoted text clipped - 10 lines] > very much worth spending the money to travel to another city if > necessary to have a more experienced surgeon do it. I disagree here...if you are seeing a glaucoma specialist over 35, the answer will be hundreds to thousands. Do you think we keep a list or an accurate count of all of the surgeries we do? The answer is no. While it is true that some surgeons are better than others, the success of a trab is very much NOT related to the skills of the surgeon and is probably 80% based on how a patient heals. Those who heal to aggressively have an increase in their postop IOP...those who don't may end up with an excellent result. Those who develop thinning of the conjunctiva may end up with a wound leak and serious eye infection...those who don't should do just fine. These are not "surgeon-related" factors but rather "patient healing-related factors." Sure, you don't want to see a 70-year-old surgeon or one who finished residency training last Tuesday, but most others are a wash. You want a surgeon who takes the time to explain what he/she plans to do and why, what the risks are, and what alternatives there might be, and if he/she uses antimetabolites routinely like mitomycin. Also good to get some "word of mouth" support from others who have used him/her. But, if you ask him/her "how many of these have you done before?" you'll probably just tick off the surgeon. Good luck, Rick Cohn, MD Glaucoma Specialist Winter Park, FL
Dave - 28 Nov 2003 21:45 GMT But, if you ask him/her "how many of these have you
> done before?" you'll probably just tick off the surgeon. Good luck, > Rick Cohn, MD > Glaucoma Specialist > Winter Park, FL Offending a surgeon would be my last worry if I were losing my eyesight to glaucoma. If he has had a successful career performing these surgeries, I don't understand why he would get upset to answer such questions. From a patient point of view, this is not the time to be dealing with someone who has such a fragile ego that they cannot take a few direct questions, if asked in a reasonable manner, without getting ruffled feathers. Someone's eyesight is on the line here, without it one cannot drive, do their job, go to the grocery without assistance, etc. The psychological impact of severe vision loss is devastating. Often blind people are made to feel as second or third class citizens, with accompanying loss of self-esteem. I speak from first hand experience, not from what I've heard or read.
If a doctor can't handle a few questions about his history, I wouldn't want him performing my surgery. The surgeon is performing a service for which he will be paid handsomely. In other areas of our society, if one performs a service for money, one should expect to be asked questions about his service history. Why should medical doctors be exempt from such questions? I understand that a doctor might not have exact numbers, but certainly he could give an idea.
I agree that opinoins from other patients who have had surgeries performed by this doctor would be invaluable to have, but let's face it, the chances of any of one's neighbors or work colleagues having a similar procedure done by the same doctor are pretty small. It's not like you're asking "who did you use as your realtor" or "can you recommend a good family attorney". The chances of a given individual needing glaucoma surgery in her life are much much smaller than the probability of these normal life events.
Rick Cohn, M.D. - 29 Nov 2003 04:24 GMT > But, if you ask him/her "how many of these have you > > done before?" you'll probably just tick off the surgeon. Good luck, [quoted text clipped - 32 lines] > needing glaucoma surgery in her life are much much smaller than the > probability of these normal life events. First of all Dave, relax...you don't have to jump down my throat. I'm posting here in my own free time as a service to the readers here. I don't get paid for this, and I assure you, I can find better things to do with my time. And yes, I DO get a little ticked off if a patient asks, "so how many of these have you done?" If that makes me insecure, well too bad, then maybe I am...do you forget that we are people too? You act in your post like we're a bunch of hardened technicians who don't understand how important your eyesight is to you. Of course we do. There isn't an ophthalmologist who practices who doesn't have to reassure patients regarding the threat of vision loss from glaucoma, macular degeneration, diabetes, and other terrible conditions. If your doctor is an empathetic person, then he/she shares your anxiety about having to do surgery. I may do glaucoma surgery very frequently, but I never look forward to it. Nevertheless, you miss the important point I made...it doesn't matter if the surgeon has done 100 trabs or 10,000 trabs. If you have a thick vascular conjuntiva (common in young patients or black patients) or certain types of glaucoma (e.g. uveitic glaucoma, neovascular glaucoma) you are much more likely to heal aggressively and therefore cause your surgery to fail, regardless of your surgeon. It is more important to have someone who feels fully comfortable using antimetabolites and can explain which they use and why.
John - 29 Nov 2003 07:13 GMT > .............................................. you >miss the important point I made...it doesn't matter if the surgeon has [quoted text clipped - 5 lines] >have someone who feels fully comfortable using antimetabolites and can >explain which they use and why. Dr. Cohn,
That is a very helpful widening of perspective. It could be read to mean that less than 100 trabs are enough to perfect operating technique, but many more are needed to achieve good post-op treatment abilities.
Your descriptions of tube surgery have been part of the reason that I am satisfied with having had tube surgeries on both eyes, rather than trabs. You have my gratitude.
John
phineasfogg - 29 Nov 2003 09:54 GMT My situation is different from yours but I will give you my thoughts anyway. I was 51 when I was diagnosed with low tension glaucoma 3 years ago. I have significant optic nerve damage and significant field of vision loss in the left eye. Right eye has good field of vision. [a big consideration] I was also advised to undergo a trab and was told of the healing issues as 50 was still "young."
I've kind of given up posting or reading here because you will not likely find here (or organized anywhere else) the group of patients who declined to undergo a trab or any sort of eye surgery (eg laser) for glaucoma. You will not read their reasons for not undergoing surgery. You will read about the more or less successful surgeries and even the unsuccessful surgeries, but it is unlikely you'll learn why some (perhaps, many of us) chose never to undergo a trab. You will not hear from those who declined a trab and never went blind. As far as I know, there is no study following up on those who CHOSE not to undergo trab. I emphasize "chose" because the posters here are homogeneous and generally swear by the procedure. When I dared to suggest such a study, I was accused by posters of proposing to withhold treatment from patients--poor misunderstood me . My thoughts... To begin with, it seems that going blind is a foregone conclusion; I chose not to undergo a trab or any glaucoma surgery because that, strictly speaking, is simply not so. The chances are that you will--there is apparently a much smaller chance you may remain status quo. The only definite thing I understand from all of this (reading posts, my reading up in general, talking to my glaucoma specialists--two of the tops in Manhattan) is that whatever damage has occurred is irreversible...as of today. I am aware lowering the pressure reduces the chances of further damage, but you could have a "successful" surgery and indeed lower your pressures, and still go blind. You won't likely hear from this group either.
Worse, there are, IMHO, so many things that could go wrong (eg pressure becoming too low) even aside from the usual infection or malpractice issues that I wondered if any such eye surgery was justified when I could still go blind even if nothing at all went wrong AND my pressures were lowered. When both eyes have significant vision loss and your pressures are sky high, and you're younger with plenty of years left to enjoy and require good sight, then you may not have "anything to lose" by a trab or other procedures. Nonetheless, you might consider the recovery period, the different aggravations that doctors might consider trivial (such as cataracts which are promoted by the surgery--my doc said basically "so what, cataracts are curable"), additional drops, the need for recurring procedures, blurry vision, etc. etc which you should get your doctor to spell out in detail.
I am not a doctor and would welcome a doctor's opinion on whether s/he has ever treated or followed up on a similar patient who declined surgery.
I hope my thoughts balance the picture.
> > .............................................. you > >miss the important point I made...it doesn't matter if the surgeon has [quoted text clipped - 17 lines] > > John Rick Cohn, M.D. - 29 Nov 2003 22:50 GMT > My situation is different from yours but I will give you my thoughts anyway. > I was 51 when I was diagnosed with low tension glaucoma 3 years ago. I have [quoted text clipped - 47 lines] > > You raise many valid points here from potential serious complications of surgery to the inevitability of vision loss, with or without surgery. Over the last ten years I have seen and learned a great deal from my glaucoma patients. Some have refused or delayed surgery against my recommendations. Of those, some maintained their central vision throughout the remainder of their life. A few others have gradually lost a significant amount of vision, either in one eye or both. While that saddens me, a physician can only give guidance...the patient is the ultimate decision-maker regarding his/her own healthcare, as it should be. I have had some patients lose vision even after glaucoma filtering surgery, either from progressive optic nerve damage or from too low of an eye pressure with retinal swelling. There even was a gentleman with a dreaded eye infection through a thin bleb that occured two years after surgery. I think about these patients often. Still, I don't regret the efforts to try to save their vision, even when these efforts were fruitless. On the other hand, I can easily come up with hundreds of names and faces belonging to those who have had successful trabs and tube shunts while under my care...those with better postoperative pressures, nice blebs, improved filtration. Many showed progressive optic atrophy before surgery that came to a hault afterwards. As I mentioned, a small minority slowly get worse. Is surgery for everyone? Certainly NOT. The reason you won't find studies on patients refusing surgery is 1) obviously going against one's physician's advice is not all that common, and 2) I find that many patients who refuse surgery are not very compliant with regular office visits, making it hard to include such patients in a study. Regardless, I applaud you for your courage and determination here. My concern, of course, is that you are quite young in the grand scheme of things...I expect your optic nerves will need to last another 40 years (hopefully). Another concern is that some patients with low tension glaucoma can show significantly progressive field loss over just a few years. If you find your field loss increasing, you might consider a tube shunt down the road...I have found these to have fewer complications than a trab. Either way, I wish you the best of luck. --Rick Cohn, MD
Dave - 30 Nov 2003 00:34 GMT .
> First of all Dave, relax...you don't have to jump down my throat. Rick, having read your response I suggest you take your own advice. I wasn't jumping down your throat. This is an open forum for discussion of opinions. I didn't attack you personally but took issue with something you wrote. You're obviously giving your opinion from a physician point of view, I'm giving mine as a patient.
I'm
> posting here in my own free time as a service to the readers here. I > don't get paid for this, and I assure you, I can find better things to > do with my time. The same can be said of most people who post to newsgroups Rick. I'm not sure what your trying to imply from your statement but it sounds a lot like "if you disagree with me, I'll take my toys and go home."
And yes, I DO get a little ticked off if a patient
> asks, "so how many of these have you done?" If that makes me > insecure, well too bad, then maybe I am...do you forget that we are > people too? You act in your post like we're a bunch of hardened > technicians who don't understand how important your eyesight is to > you. Rick, as in all large and diverse groups of people, such a blanket statement does not apply to all ophthalmologists. I was making no such statement. And again, none of my statements were aimed at you personally. I don't know you. You may be the best glaucoma surgeon in the world, you may be the worst, but I don't know you from Adam. Some ophthalmologists are empathetic to their patients feelings. others are not. Some are on ego trips, others are more humble when they dispense their services and knowledge.
And on the contrary, I know all too well that ophthalmologists are human and therefore can make mistakes. I was the victim of an ophthalmologist who didn't realize what a pandora's box he was opening by performing surgery on my eye. Soon after that surgery he realized he was in over his head and had to send me elsewhere to have emergency surgery performed to correct his mistake. While I'm sure he did feel bad, if the worst had happened, he would have still collected his multi-thousand dollar surgery fee and continued with his practice while I would have been left nearly sightless trying to pick up the pieces of my life. This is why I question surgeons, so I feel as confident as possible that they are qualified. I don't accept a medical degree hanging on an office wall as sufficient proof any more. I make no apologies if you find that offensive.
Rick Cohn, M.D. - 01 Dec 2003 04:39 GMT > Rick, as in all large and diverse groups of people, such a blanket > statement does not apply to all ophthalmologists. I was making no [quoted text clipped - 18 lines] > medical degree hanging on an office wall as sufficient proof any more. > I make no apologies if you find that offensive. You are right that this is an open forum for expression of ideas, and I support you in your right to air yours, even if our approaches may be different. Certainly if I had been through all you had with your eyes, I would probably have a similar view. Sorry to hear about all you've gone through. No, I don't find you or your approach "offensive," Dave, it's just not the way I handle things with docs I go to. For example, when I lost my Mom to cancer a few years ago, I knew she had a rare type of sarcoma in the abdomen. I searched the internet to find the best sarcoma guy at Sloan-Kettering in NY. I read all I could find before I talked to the guy. Ten different sources told me this guy was the local guru on sarcomas in NY. Then when the time came, I didn't need to check with him about his credentials or how often he had seen cases like my Mom's. I could tell immediately by his pompous attitude that he had tremendous confidence in his treatment regimen...I just wanted to know if he was going to recommend chemo, what kind, surgery, or both chemo and surgery. Again, the problem for me is that a person can talk the talk, but that doesn't mean he can walk the walk. Unfortunately, you've learned that the hard way. Oh, by the way, the average reimbursement for a trab is not "multi-thousands of dollars." It's generally between $900 and $1200 depending on the area its done and which insurer is paying. That also includes ALL of the postoperative visits for 90 days after surgery, which can be quite a few after a trab. I may see a postop patient 15 times after a trab during the first 3 months, each time for free. I assure you, no one is getting rich off of glaucoma surgery. You'd have to do more than a handful of trabs each week to pay back the over $100,000 of student loans that most students leave med school with these days. Don't get me wrong, I'm sure your doc isn't ready for the bread line. It's really cataract surgery that pays the bills in the office, not trabs (too much work and heartache for doctor and patient alike). Anyway, I wish you the best, Dave, Rick Cohn, MD Winter Park, FL
Dave - 06 Dec 2003 03:22 GMT > > Rick, as in all large and diverse groups of people, such a blanket > > statement does not apply to all ophthalmologists. I was making no [quoted text clipped - 53 lines] > Rick Cohn, MD > Winter Park, FL Thanks Rick, I appreciate your response. I'm also sorry to hear about your mom, but I'm glad you found a doctor for her that was confident and capable. It can be a comfort, even if a minor one, to know that a loved one received the best care possible. Dave
Tom - 04 Dec 2003 10:12 GMT I had a trab in the left and right eye when I was about 39 and I am over 55 now with no problems and a consistant pressure of 10-15 with no meds until this year. I just recently went on timoptic in one eye as I want to keep pressure lower than 15. Have no fear of the trab, it's a good solution and the results without are not good at all. Cheers, Tom
>> Hello, >> I will make this short, so it's not to overwhelming to read. I am a [quoted text clipped - 32 lines] > >Best of luck to you. Tom - 17 Feb 2004 23:01 GMT I had a trab when I was about 39 in "both" eyes. They worked perfectly for over 12 years then one went bad. I would do it again and again if necessary if my vision was being lost at the rate yours is. I wish you the best.. Make sure to go to the best doctor available when you get your trab.
>Hello, >I will make this short, so it's not to overwhelming to read. I am a [quoted text clipped - 22 lines] > >Much appreciated. Donald Singleton - 18 Feb 2004 12:35 GMT Tom, I haven't had trab myself, but I think my doc is preparing to tell me it's time -- pressures rose a bit last time, and Lumigan didn't help as he had hoped it might. I've had all the drops, two rounds of ALT in both eyes, and pressures always never quite low enough. I'm a lot older than you, but if I were you I think I'd run, not walk, to follow my doc's recommendations. If he's not a glaucoma specialist, try to get a referral to one. You have a lot of years ahead of you, Lord willing, and they'll be a lot better if you can salvage the maximum possible percentage of visual fields. Best of luck to you.
Don Singleton (age 67, no white-tipped cane yet, thank God!)
> I had a trab when I was about 39 in "both" eyes. They worked perfectly for > over 12 years then one went bad. I would do it again and again if necessary [quoted text clipped - 31 lines] > http://www.newsfeed.com The #1 Newsgroup Service in the World! >100,000 Newsgroups > ---= 19 East/West-Coast Specialized Servers - Total Privacy via Encryption =---
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