Should I have surgery on my eye?

[Jennie@ifish]

This is fun. I have been sitting on a heavy decision for a year now. I can't seem to come to a decision.

I had surgery on my eye a year and some ago, and it came out so that now I see better in a way, yet I also see doubles and triples. It's disturbing, and I'd like to get it fixed.

Problem is, my eye seems to fall apart, under surgery. When I asked the surgeon who did my eye to fix the problem, his answer was, "Jennie, not only do I not want to do surgery on you, again, I loathe the idea!" He told me my eye literally fell apart in his hands. Yuck!

So, he said there is another way, and that a doctor friend of his could try doing it another way, where there isn't such intrusion. Problem there is that this doctor has NEVER performed surgery on a marfan patient. We are different. Our tissue doesn't act like normal tissue.

So, I could lose my eyesight in that eye, altogether, if the surgery doesn't go right. Or, I could have worse vision, or, it could work! There are other problems too, such as risk of infection, and the normal surgical risks.

I could also fly to the East Coast, where they specialize in Marfan patients, and get it done by a surgeon who knows what she is doing. Problem there? Cash flow, and whether insurance would at all come into play.

What would you do? Would you max out your visa for your eye sight? Even then, there is the possibility that it might not go well. There are no guarantees at all.

I'm up in the air, but I think I am going to decide, once and for all, very soon.

I know that you can't make this decision for me, but it would be helpful for me to hear what you think.

Let's vote on my eyes! :smile:

Thanks for your input! :smile:

Jen

[ 12-12-2003, 08:45 AM: Message edited by: Jennie@ifish ]

[Silver Hilton]

I have really bad eyesight, -9.5 in one of the eyes, plus astigmatism and presbyopia. I have considered laser surgery for years, and have always been put off by the risk of a bad outcome. And this is for a surgery that is straightforward, commonly practiced, with now complicating factors.

In your situation, sounds like the downside is both more likely and more severe. I'd be inclined to wait for a while and let the doctors practice on someone else.

[letsfish]

Can a lot of the work(prep)be done here so that the doctor on the East Coast would be able to look at data(scans, photos, history, etc) sent to them and decide that you are a good canidate? Would hate to see youu go alll that way and then be turned back.
Alot of us here(on ifish) are aware of your condition and think of you often.You have made us aware of the gift of sight in a new way.And we are praying for you!

[crabbait]

I think I would investigate all options in order to use the surgeon with Marfan experience. Sounds like you might get only one shot at this.

Hope you do not find this to be a crass analogy: Had a friend with a pup that had injured her hind foot. She was 6 mo. old and not putting any weight on the foot at all. I noticed that the hip muscle was starting to atrophy and pointed it out to my friend who got the dog to a good vet.

The vet took xrays that showed that a small bone in her foot had been previously broken and that a very small sliver of bone was lodged in the joint, causing her such pain that she would not walk on it. The vet said that he could do the surgery and remove the sliver but that he was not a specialist in this type of surgery and the dog might or might not fully recover. He suggested a specialist.

The specialist looked at the xrays and said that he had done many such surgeries and described his, much less intrusive, technique which required pretty sophisticated equipment and cost three times as much as vet #1. What should my friend do?

I told him that if he elected to go for the cheaper vet and the dog came out limping for the rest of her life he would always regret saving the money. Even if the more expensive surgery left the dog lame he would at least know that he had done all he could.

In the end, it is your decision, and a very difficult one. You have my full support in whatever you decide.

[Jennie@ifish]

I forgot option 7....

Don't max out your visa unless it is for a new Willie boat. :smile: :smile:

Jen

[Pitch Pocket]

Yes, No.......Yes........No

It's impossible for anyone to advise you on this one Jen. You are the one who lives with the results. Research, research and research again the finest surgeon, doesn't matter where he is and then weigh your options. Apply to your insurance to see if they will cover the finest surgeon you found and his procedure and weigh your options again.

Don't accept cut rate deals where your eyesight is concerned. The surgeon that does the most similar procedures is the one you are looking for. Good luck!

[Reelentless]

When it comes to my eyes, money is no object. Id do and pay whatever it takes. Just my opinion.

[ampersat]

There's one thing for sure: if you don't do the surgery you'll always be considering it. It'll gnaw at you for the rest of your life (yes, I'm punning off of crabbait's post).

There are two factors at play here: eye surgery and your marfan's syndrome. Are the "other coast" doctors eye surgery specialists? If so, and they are familiar with the issues of marfan's patients, I'd say make the trip there as opposed to having it done here.

As the poll says, tough decision. If money is a big concern, I'd bet that most of us here at Ifish would contribute to a funds drive to help defray the costs.

[kayakfisher]

The OHSU opthalmology department is a very good one...consider contacting them and asking if they have experitise regarding your particular problem, and experience with Marfans patients needing your particular surgery. If they don't have significant experience they may be able to advise you as to whether there is a center that REALLY has significant expertise with patients with your particular situation. The new dean of the med school by the way is also the chairman of the opthalmology department. That department is likely the best concentration of eye knowledge and experience in the northwest.

Insurance...after your deductable is met everything should be covered in full, right? After the first of the year you are likely starting from scratch...so that makes it a tough decision in some ways. Inurance companies do have a way of changing the rules as the game goes on, but if you need preapproval...you may be able to convince them that it is cheaper to simply go with the best place first...and that less complications is in reality cheaper for them.

Good luck with it...

M.

[Pitch Pocket]

They don't necessarily pay all after your deductable. That is a very expensive policy if it is available at all. Normally they pay 80% after your deductable is met. If they have a preferred provider plan, and your doctor is not on the preferred provider list, they will only pay 60%. Terms of insurance vary between providers.

[Birdnest]

Jen,

Unfortunately a lot of things in medicine are not straight forward, but you already know that. Doctors are not perfect people capable of anything. The fact that your doctor is putting aside his/her ego and being honest is the kind of doctor you want to hang on to, with both hands.

As far as possible outcomes that you mentioned. Would loss of vision in that eye be worse than seeing triple? Does the Marfan's put your other eye at risk? Do you have hard numbers on success rates from the specialist back east? Will any of this cut into your fishing? I realize none of this makes your decision any easier, I suppose those are just the things I would consider.

I wish you the best in your journey.

Joe

[fishbait]

My question is: what is your quality of life now? Is it acceptable. If it is then I might wait and research my options and save my $. If it is not acceptable then you should act.

if you elect surgery are the things that you can do in preparation, I don't know what, diet, exercise, supplements, vitamins, drugs that might make you a better canidate pre surgury and heal faster/better post surgury? Think outside the norm on this,as you know it is important. Ever used accupuncture? Natrapathic (sp) medicine? Chineese medicine? I have a few contacts if you want more information. What is being done in the far east and europe for this?

Good luck and God bless....... Steve

When I have an important decision I write the pros on one half of a sheet of paper (or 10 sheets) and the cons on the other. Called a ben Franklin close. This helps me think things through and prioritize the information.

[Paddlefish]

Jennie,

Let me play a bit off Silver Hilton's remark about waiting a bit to see whether option D,E,F, or G develops and is a beter alternative to all you've seen so far.

I was a little preemie with a heart defect. No cure. By the time I was 10 years old, the Mayo Clinic had developed a surgical repair. It had been tried twice: one patient died; the other was fixed. Hmmm. My parents didn't care for the 50:50 odds so we passed.

By the time I was 16, my doctor said, "You really have to get this done, or this overworked thumper will be worn out by the time it's 30."

So we went ahead. And the hospital staff marveled, because they weren't used to doing this on teenagers; it was so common by then -- just about the simplest heart surgery going -- that they were only used to doing it on babies.

I'm now 54, 6'5", paddling and bicyling hard, fitter than my teenagers, and "normal" -- well, at least cardio-vascularly speaking.

My point (finally) is that I suggest you not rush, unless your condition is actually degrading and needs to be fixed before it's too late. Medical advancements are coming at an incredible rate. (Some day they may even have a fix for my left eye, which caught a scissors when I was 3 -- but that's another story.)

I know you're well plugged into the Marfan info network, so I'm sure you know far more than the rest of us. I'm just cautioning against letting impatience or frustration have too big a voice in your decision.

Very best wishes.

P.S. The last time I had a pre-employment physical, the Doogie Hauser-type M.D. only wanted to talk about my surgical scar. It seems that they NEVER do surgery on those any more; they've
created a medication which performs the repair.