Hi there. I read your post with great interest.I have never heard of the fenestration being done as an out patient but you live and learn.!

I thought it was a bit more complicated of a surgery? I know a few here have had it done so I look forward to their input on the subject.

I do know, they wont do that surgery at all in Ireland. It seems, ( so they told me) it was a very delicate operation and you would have to be very skilled to preform it. Also, the success rate wasn't great.

I dont want to rain on your parade but would like to hear more from others be fore I offer my congrats! I have become very skeptical of any thing that is described as "easy or routine " with us. Cath.

Cath278, thanks. Hoping it isn't complicated, but I wasn't sure either. I am in Dallas, TX and my ophthalmologist is Dr. Grant Gilliand. I've done a lot of research on him, and he's one of the best. He sees a lot of PTC patients though. One of his sub-specialities. The rates he gave me was that there was a 1% chance of blindness, but he's never had a patient go blind in 15 years. And a "success" is if vision doesn't get any worse or it damage reverses/improves. His success rate was well over 90%. He said in the last 5 years, he's maybe had to re-do an unsuccessful surgery 3 times. I'm scared, but very impressed with him. Great bedside manner, and he didn't jump to surgery right away. Monitored me for a few months and kept it as a last option, and even now he's just doing the one eye. They'll do my left, see me a week later to reassess. It may relieve enough pressure to help both eyes. If not, then they'll do my right. I'd love to hear of someone else that's had this done though. Even though I like my doc and have confidence in him, it's still a surgery and a very delicate one at that. :)

I have never heard of this and have a ton of questions for you, so I apologize in advance.

Why are they doing this procedure?

Is this because medication and LP's didnt work to lower the pressure?

Do you or did you have a shunt?

I am only about a year and 8 months into this damn condition and it just seems to be one thing after the other.

I was diagnosed in August of this year, after my annual eye exam reveled my optic nerves were inflammed - papillidema or paps on the message boards. Only about 40% of people with PTC even have paps. If you don't have paps, then you wouldn't have heard of this. Basically, it's a side effect of PTC. (You can have normal pressure in your eyes and have PTC, or vice versa.)

August and September I felt awful, but by mid-September, I had one LP, been on Diamox for 6 weeks and lost 20 pounds, when my symptoms got much better - almost went away. However, my paps were still there. The longer their inflammed the more risk one runs of having vision damage. Currently, my blind spots are very enlarge, and I have new, unnatural blind spots popping up. So I don't notice it too much on a daily basis, but a visual field test each month revealed vision was getting worse. Finally, 3 weeks ago, they said I needed the surgery to relieve the pressure long enough for my paps to go down. Right now, my doc is confident my vision damage will reverse, but didn't want me to wait to long or it might be permanent.

I don't have a shunt and do not want to go there. My doctors are in no hurry either, as my PTC symptoms are actually milder than most, and I can manage my day-to-day life with PTC. No pain killers, just Tylenol every now and then. Weight loss has been key for me, but doesn't work for everyone. And I needed to preserve my vision and buy more time to lose weight to get rid of PTC.

They go through the side of my eye, go behind it and poke 3 holes in the tissue behind my eye. These holes drain the fluid and it absorbs into surrounding tissue. Then they roll eye back and stitch muscle in eye by nose. The holes can stay open for a while and help with the other PTC side effects, but the hope is that my optic nerves will settle down and vision will not get worse or damage will reverse.

My doc told me that one or 100 spinal taps could do it. Sometimes the LPs make your system reset and PTC goes away, and other times it doesn't work. It helped make my symptoms even milder, and medicine is helping slightly, but my PTC isn't completely gone.

I'm lucky I can live with my PTC symptoms - all but the vision loss. That's what the optic nerve sheath fenestration is for. Hope that helps. It's a lot to process.

Good luck, please keep us posted on your recovery. My daughter was diagnosed in August too, had 4+ pap, unfortunately we were misguided and she had an LP shunt placed immediately, big mistake for her. Shunt has since been removed only after tons of serious complications and now she is back to the beginning.

It sure sounds like you have done your research! I learn so much from everyone on here. Questions to ask and what to do and not to do.

Do you mind if I ask what you are doing to lose weight?

I had the same surgery in my left eye in August. My DOC when through the side of the eye as well. First the bad news then the good so don't freak out.

Immediately after the surgery I was in an extreme amount of pain when I woke up in the hospital and then gave me IV pain drugs and I slept off and on most of the day. Also the inside of my mouth and throat hurt because they were bone dry from the breathing tube and meds. They were able to give me ice chips so that helped a ton.

I had a metal eye shield that I wore for the first two days and then wore it to sleep at night as I am an active roller and frequently fall out of bed! It just tapes right onto your face no biggie.

You do need to go home with pain meds unless you already have some. I had Opana ER at home so that is what I took. For two days I slept most of the time and was in a lot of pain. I had to keep both eyes closed because it hurt too much to open my right eye and squeeze the left eye shut. If you leave both eyes shut your face is in a relaxed position. I had to have someone lead me to the bathroom, put me in bed bring me food and water etc for those two days.

On the third day most of the pain was gone as was the swelling (which I think hurts more than the incisions themselves)

By the fourth day I felt like myself again, almost all swelling was gone and I had a black eye. Each day after it got better and 6 days after surgery I was back at work on light duty.

I had to wear an eye patch (like the pirate ones) for 7 days because I got really bad double vision, but with the patch it did not bother me at all. The strap of the eye patch hurt when on so I cut the strap off except for a small length and sewed the little piece of strap back onto the eye patch to make a loop so I could slide my glasses leg through it and wear it that way.

By the 9th day I barely had any black eye left. It is amazing how fast your eye heals!

It is very important to take it easy and rest the first few days, it makes all the difference.

If you have any other questions let me know and let me know how your surgery goes!

Emerson

My daughter is scheduled for surgery on both eyes next Wednesday as well. It has to be done because her discs are swelling again even though she is on 1000mg of Diamox a day and has had multiple LP's and steroids to help. She can't tolerate the meds and already came down from 2000mg as she had bad tremors, stuttered and lost 20 pounds (for an 11 year old that wasn't overweight). Anyway, I haven't heard anything more that what you have already reported for recovery so I am hoping it won't be too bad either, she's my little baby!! Apparantly they do it as a day surgery here as well but because she is getting both done and is also Autistic they will be monitoring her in hospital for a day or two. I wish you all the best with your procedure and hopefully things will work out for the best!!

I had optic nerve sheath fenestration surgery on both eyes in 2008 by a neuro-ophthalmologist. I was in the hospital over night since I had both eyes done at the same time. I had surgery done on Thursday and was back to work the following Tuesday. I never had to wear eye patches and had a little bit of discomfort. I really would not call the discomfort pain. I had to use 2 different kinds of drops for about 3 weeks. I had a great NO and he had a lot of experience with this procedure. He saved my vision. He actually was the only one with 200 miles who did this type of surgery.

Please let me know if you have any questions I can answer. Best of luck.

Karen

Thank you for sharing. Hoping for the best, but preparing for the worst just in case.

I don't mind sharing what I'm doing for weight loss - just counting calories - about 1400/day, and trying to get in 30 minutes of exercise each day. I do use a great website www. startyourdiet.com to help count calories, and it's only $30/year for the food and calorie database and all of the added tools. Very worth it.

I'm so glad we have this site--I just got a referral to a surgeon today to discuss this surgery. My neuro would like me to avoid the shunt due to the high rate of revisions he sees. Since protecting my vision is a top priority he wants me to consider this surgery.

I have been doing okay from a clinical standpoint. I've been on diamox and topamax for 9 months and I had to cut back to part time at work. I'm thankful I can still work! My 3 kids and husband miss having mom that is active and runs around--it's all I can do to work my job 6 hours a day and cook them dinner before I pass out on the house from all the drugs I'm on.

I also feel sick all the time because of the sinus/ear pain. Many nights I have to take a pain medication to sleep from the severe headaches.

I don't want to do anything overly extreme. But at what point do you say "there's gotta be something more we can do here?" to your Dr's. These drugs are not a means to an end--can I take them from 30 until I'm 80?

The Dr. has warned me that while this surgery is good for your eye issues it may not do anything for headaches etc. so I'd like to hear feedback what improvement if any people have had in their symptoms.

Thanks, Cath.

Spectacularone, I will let you know in a few weeks how it went. I have the left eye done tomorrow, and will find out on the 21st if they will go back and do the right eye. But my ophthalmologist said as long as the small holes they put in the tissue are still there (they can stay for quite a while or close up), it will help releive the pressure and help with my symptoms to some degree. A little help is better than none, as that is all I need. My symptoms, aside from my paps, are all on the milder side. Will keep you posted.

As a side note, it is amazing to call a huge hospital for your preadmissions and every nurse I talked to literally raved about my doctor. I already really liked him, but apparently he works with kids a lot too and the staff seem to love him. Dr. Grant Gilliland out of Dallas is my ophthalmologist.

Made it through, and feeling almost back to normal after only a few days. I had the surgery on Wednesday, patch came off on Thursday. They gave me some pain meds as hospital, but on a scale of 1-10, I was only about a 5 or 6 even in recovery. That only lasted briefly. I used pain pills to ease discomfort for sleep, but didn't really need them during the day. Just a little discomfort, as it feels like there's something in your eye. No bending, lifting or stooping though - nothing heavier than 5 pounds. Grandmas have been helping with my 35 pound 2 and half year old son.

I couldn't really focus well on anything until yesterday though. My eyes just felt tired. Today, able to watch TV and focus with glasses on for longer periods of time. Overall recovery - not that bad. Found out that it was outpatient since it was one eye, but if both are done at the same time, they keep you as in-patient.

Had an amazing doc. He said surgery went well, and fluid came gushing out behind left eye, which was a good sign. He thought it would cure paps behind my left eye and very likely be enough to relieve pressure on my right without another surgery. I go back Tuesday for a post-op and will find out if I have to have surgery on right.

Hoping Dardue's daughter's surgery went well and she is recovering, too. I would say, it seems like a great ophthalmologist/surgeon is key. After going through one eye, if I have to have it on the other, it is something that I could handle.

Oh, and as long as the little holes/window stay open that he made, it will also help with PTC symptoms. I know that can vary from slightly to mild, and the holes to relieve the pressure can stay open for days or years. Just praying mine stay open long enough to continue my meds and weight loss this spring, as that was key for me.

I am glad things went well. Dr. Harrington did my surgery, he is Dr. Gilliand's partner. I LOVE Dr. Harrington. Even though my surgery didn't stick, it saved my vision for the time being.