Anonymous said...
My husband cancelled his surgery yesterday. He thinks he has had a MH for over 4 years. He only just realized he had distorted vision when after many pairs of glasses didn't help. He actually had to tell the eye Dr that the print in emails where distorted over and over again, and that is when the Dr looked even deeper into his eye and suspected MH. He was then referred to a specialist. We went for another opinion and the same bad news was given so he chose to have surgery. The night before surgery he realized that after 4 years the hole or should I say his distorted vision hasn't gotten worse, so why should he risk having surgery that may or may not work, or could even make it worse, and that it will eventually lead to cataract surgery and lens replacement with in a year or two. He also feels that it may be getting better after using steroid drops for only 30 days. (Recommended by Dr before electing to get surgery) Do you think that after this many years his hole will not enlarge and that another round of steroid drops will help, or even stop the hole from enlarging? I've read all the good and bad responses in many blogs and quite frankly it seems sometimes it may be better to just wait it out. He see's quite well out of that eye now, only a little distortion. Can't he just be monitored monthly to see if the hole is enlarging? He is really struggling with this. We shipped your equipement back today, which seemed to be the answer if he had gone through with the surgery. Do you have any cases where the hole edges healed and the patient is doing fine and maintaining the same vision for many years? Thank you in advance for your responce.

November 25, 2008 1:38 PM

Recommended surgeons for macular hole repair

Anonymous said...
Hello,
I am in Italy and need an advice. If you had your child with a macular hole due to a thrauma, and have to go to the best specialists in US to have him operated, where would you bring him?

Thank you so much, it's crucial for us to know the right places-names.

November 16, 2008 10:43 AM



Whew-I am truly flattered, yet humbled, by your question.

I am very proud that you believe coming to the United States of America for medical treatment is the right first step. I believe it too. However, I am afraid it would be inappropriate for me give a particular name or practice; I am personally not qualified to make a determination of any particular surgeons abilities. I can recommend choosing a Board Certified Retinal Surgeon; all have ideally reached a minimal level of competance in order to attain their title.

I have personally seen the expertise and outcomes of several retinal surgeons, but only in the Pittsburgh, PA area. Of the surgeons I have had the experience of working with, I can say with sincerity I would trust a couple of them with my own child. There are several surgeons and practices in other regions that have achieved world wide reputations for their research and prominent journal contributions but the truth of the matter is what you want and need is experience and ability in the operating room.

And now I am going to stick my neck out, just a little. I advise that you be sure the surgeon you choose to treat your child is the same surgeon who actually performs the surgery, this is particularly important if you are being seen in a teaching hospital facility.

Good luck to you and your child.
Toni

Good informative website...

This Retina-Vitreous Center in NJ does a great job of explaining macular and retinal diseases. If you are interested in macular degeneration treatment trials be sure to look at their Retina scope newsletter from January 2008. Cut and paste the following link:
http://www.retinavitreouscenter.com/patient_education_macular.html#macular_hole

American Society of Retina Specialists Convention

I am excited to be attending the American Society of Retinal Specialists convention next week. Five years out of the clinical setting makes it essential I attend conventions to try and freshen up on the new and exciting progress in the retinal world. It doesn't hurt that the convention is being held on the island of Maui! This is my first tip back to Hawaii since holding my very first position in an ophthalmology practice. I was an ophthalmic assistant at the Hawaiian Eye Center under the direction of John M. Corboy, MD. He was a pioneer in cataract surgery and used the phacoemusification technique and refractive nuances to achieve an extraordinary percentage of naked visions under 20/40. And that was in 1989! Not to mention he was quite the business man. He encouraged me to get certified as an assistant, I was a youngster of 23 at the time. Later I certified as a technician and learned the skill of fluorescein angiography.

As I mentioned after a convention in New Orleans earlier in the year, there doesn't seem to be a great amount of change happening in the surgery for macular holes, but whatever is happening I aim to keep up with. A recent customer was involved in a study in California using some new techniques I hope to learn more about.

One of the few surgeons most adamant about the lack of a need to position face down after macular hole surgery will be there, Paul Tornambe, MD. When I met Dr. Tornambe at the ASRS convention in New York in 2003 he told me I would probably be in business for about five more years before face down positioning would be obsolete. Certainly the standard two weeks of positioning has fallen to more like 7- 10 days, but by far, most retinal surgeons continue to require patient compliance with the face down recovery process. Some retinal surgeons, even while requiring their patients to position, feel the positioning equipment my business revolves around is unnecessary or too costly. It is true some patients get through the recovery successfully without assistance, but no one is going to say it is easy. I cannot please everyone every time, but I continue to stay in business because many people are served well by Kelly Comfort and by me.

Undoubtedly, I will have much to learn next week about the progress being made in the treatment of macular degeneration. Really exciting things are happening there. When I left clinical work in 2003 I was actively involved with the latest treatment for exudative macular degeration at the time, Photodynamic Therapy or PDT. The practice I worked for in Pittsburgh, PA was involved in the clinical trials before it became FDA approved. It was an exciting time, but wow, the stuff they are doing now...I'll be taking lots of notes.

I look forward to sharing whatever I learn with you!

Reader Questions and Suggestions

Hi Kelly;
I have been referred to a vitreoretinal surgeon for a macular hole in
my left eye. However, I have this strong feeling that I have it in my
right eye as well. (I was diagnosed with macular puckers in both eyes
earlier this year). The vision problems in each eye are different --
left eye is blurry central vision spot; right eye is difficulty
focusing and what appears to be a "central floater".

I see a surgeon next Friday, but am curious. When both eyes are
involved, is surgery generally performed on both eyes at the same time,
or are they typically done at different times? Just curious. This
waiting to see the surgeon next week is difficult.

Linda


Hi Linda:

Vitrectomy surgery is done one eye at a time. The risk of post
operative infection is very, very small but if infection occurs it can
be devastating. It would be difficult to contain an infection to one
eye therefore, the benefits of doing a bilateral surgery, if there are
any, are far and away outweighed by the risks.

Linda, this is a very good question and one in which others may be
interested. May I post your question on my blog:
vitrectomy.blogspot.com ?

Toni Kelly

Exhaustion during vitrectomy recovery

Wondering if you have heard of any symptoms such as tiredness or foggy head during the bubble dissipatingstage. 10 days ago, I felt great and on the mend. Then, as the bubble started to divide, I noticed feeling exhausted. I feel like I'm not myself 5 weeks after surgery!The surgeon changed from my steroid drops to non-steroidal anti-inflammatory two days ago. I noticed aslight improvement but still exhausted.Ever heard of these symptoms in the late stages of bubble dissipation?

Dear Anonymous:
A feeling of nausea or seasickness from the movement of the bubble as it becomes visible is not an uncommon complaint. It sways in the eye with movement and gives the effect of looking out at an ocean from a boat. The complaint of exhaustion I am not familiar with however. You have done the right thing by mentioning it to your surgeon and I would advise you to continue keeping him or her informed. I would like to hear from anybody else who has experienced these symptoms of exhaustion or foggy head.

What if I don't get my macular hole repaired?

HI,I AM LITA. LAST JUNE MY EYE DOC. SAYS I HAVE MACULAR HOLE. i WAS READY TO HAVE IT DONE BUT BY THE TIME I LEARNED ABOUT THE RECOVERY PROCESS I CANCELED IT. i HAVE IT ON THE RIGHT EYE. THINKING ABOUT IT IS UNBEARABLE I DO NOT HAVE THE ENERGY TO HAVE MY FACE DOWN FOR AT LEAST 2 WEEKS OR SO. IF I DON'T DO IT WILL IT GET WORSE OVER TIME? what IS THE BEST THING TO DO. Any IDEA HOW MUCH IT COSTS TO HAVE IT DONE?

Dear Lita:

The recovery does sound worse than the surgery doesn't it? That's because it is! However, it is not unachievable and people do it everyday. Your fear is not unreasonable, but you need to understand that the hole will probably not get better on its own. There are cases of holes spontaneously closing, but they are unusual. I cannot give a definite answer to your question about whether your hole will get worse or not. It may get bigger, depending on its size now. Rarely, retinal detachments occur, a MUCH bigger problem that can affect your entire field of vision. Mostly, macular holes left untreated leave you with a dark spot right in the center of your vision which makes it very difficult, maybe even impossible, to read with the affected eye. Probably the best argument for proceeding with the surgery is that one day something could happen to your other eye that would leave your right eye your "better" eye. Would you be able to drive or read if you lost your left eye? Something to think about. The likelihood of surgical success is better with a fresher hole. Conventional wisdom says it is better to operate on a macular hole that is less than a year old.

As for the cost of the surgery, your surgeon's billing person should be able to provide you with the cash cost but most insurance companies will cover this type of surgery (though they may not cover the cost of the rental equipment).

Toni Kelly

Vitrectomy while pregnant.

Hi, I came across your blog and website while looking into vitrectomy recovery options. I am likely to have my second surgery this coming friday. I had a scleral placed a week ago that unfortunately did not completely fix my retinal detachment. My doctor said the vitrectomy with the gas bubble is the next option, one were we hoping to avoid. I am currently 21 weeks pregnant, and so of course the face down recovery is presenting some interesting issues since obviously my stomach is going to be in the way. I was wondering if anything that your company has may be useful for the recovery, maybe even cushions geared towards the obese that may be able to support and pad the stomach area in my situation. Thanks for any advice you can offer. ~Beth

Beth:

There is a product used for massages on pregnant women called the Prego Pillow. www.pregopillow.com The spa I went to used one when I was pregnant and it was pretty good. I have considered adding one to my product line several times. Good luck!
Toni Kelly

A Testimony

Anonymous said...
i have had surgery two weeks ago and if wasn't for the massage table and the massage chair i would have not made it! i put a 19" tv under the chair and watched tv for hrs. the cahir is the life saver. bless you all, if i did it anyone can. good luck to everyone :)

How long are you restricted?

Lynne said...
hi thereMy Mom who is almost 72 will be having the operation (gas) for a macular hole in early June. She is, understandably, very nervous. She is also the primary caregiver for my Dad.She is wondering how long after the operation until you can exercise again - she takes private fitness training and has to come to an arrangement with the trainer for her time off. I know it will vary by person, but are we looking at months or weeks?Also, does anyone know where we can rent these great equipment options in Canada? We think we have found a place where she can get a massage table, but I would love for to have some of the stuff I have seen in Britain and the U.S. where she could sit at a table. She has arthritis and is very worried about having to lie down for so long.thanks in advanceLynneottawa_lynne@yahoo.ca

Toni Kelly said...
Lynne:How long it will take to return to normal activities is variable. The bubble itself will last for at least a few weeks or longer, limiting things such as flying or traveling to higher elevations (the gas inside the eye can expand at high altitudes). Your mother's surgeon will be able to give you the best answer to her particular activities.There is a company in Ontario called Labtician Ophthalmics that carries Vitrectomy Support equipment. 1-800-265-8391

Suggestions for the obese

Anonymous said...
I will be having surgery very soon. Have lots of entire cervical pain due to injuries-healed compressed vertebrae fractures--still hurt, knee pain, surgery and need more on other knee. Shoulder andarm pains, tingling in arms hands fingers, when in bed especially -old injuries and substandard medical care for most--MY question: I am obese-cannot dance or exercise anymore-and breasts bunch up and hurt if I am at foot of bed and of course back strain etc. How can i sleep with head rest at end of bed-or on bed-and prevent Pain from breasts? I am practicing and realize it will be painful unless some supoort around breasts. What do you recommend?

Toni Kelly said...
Dear Anonymous:Wow, as if it wasn't difficult enough to do this positioning thing! There is a sternum pad that can be used with the seated support chair that fits between the breasts, and many doctors will allow you to sleep on your side(they will tell you which side depending on which eye you are having worked on) as long as you turn your head way to the side. It isn't ideal but some people just cannot, for a variety of reasons, sleep on their stomach . Does anyone out there have any ideas?

Bilateral Macular Holes

duckdown said...
i need to say that i have a macular hole in baoth eyes at the same time and although i have had surgery in one eye *unsuccessful( and am going through another one in the same eye i feel not enough is ever said about what you can do about not having an operation an just learning to live with the problem. so you cannot dirve read or watch tv so what there are loads of other things that you ccan do. i am not abeing negative and if you only have this condition in one eye then go for it but in two eyes (1 in 5 million) think again.
Toni Kelly said...
To Duckdown:Choosing to go through with any type of surgery is always a matter of personal choice. While macular holes rarely cause complete blindness they can very definately cause significant visual impairment and legal blindness. For many, I dare say most, not being able to read or drive is a condition not given into without at least trying to fix the problem. Certainly most of the viewers of this blog are interested in trying to fix the problem, which is why you are not reading more comments about dealing with the disability. You can probably find more information about coping with vision loss through macular degeneration support groups. I am guessing you won't find any blogs about it because it is so very hard for victims of that disease to see a computer screen!But let's talk about you and your particular case, bilateral macular holes. Yes, it is unusual to get a MH in both eyes, but not unheard of at all. There is no one who will argue that MH recovery is difficult, and to have gone through one without success must be extremely discouraging. You alone can decide what limitations you can live with as well as how much you can endure in an effort to retain functional vision. I would encourage you however to try to find the strength within you to give both eyes a chance. Do you think you could try to endure another two weeks of misery for the chance of good sight? You may sail through this time. Try to keep your spirits up, your figurative heart and your powerful brain hold the key to many of your physical defeats and successes! Let me know how your story goes, Duckdown.

How the Gas Bubble Looks To Me

steffan said...
I too, am now recovering from a vitrectomy.I was religious with the head down after surgery and use a micro panasonic video cam to see ahead and up. It worked pretty well.the doc had me down for 3days and said to come back on the tenth day which was yesterday. He said the hole is closed! And he let me taper off my steroid drops during the next three weeks.at first I had this lake that I was peering over. And today it is still there but tide seems to be going out.I thought the tide would rise and fill in the gas. but the level seems to be dropping (10 days after surgery). Is this what others have experienced?

Toni Kelly said...
The tide is the gas and as the gas dissolves you will appear to be looking over the bubble when you raise your head. You are actually looking under the bubble as it rises in your eye. Remember the mirror image of objects you see reflect on the retina as they go through the lens of the eye. The bubble is behind your lens so it doesn't get reversed in your brain! So the tide is going out and will eventually disappear.
August 21, 2008 12:14 PM
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New Orleans Academy of Ophthalmology Convention

Recently I attended a convention in New Orleans that concentrated on retinal and corneal issues facing ophthalmologists today. Of course, my interest falls to the retina side, always has! There was much discussion regarding macular degeneration and the courses of treatment for this very destructive disease. There was a lot of talk about diabetic retinopathy as well. Ophthalmologists are gaining ground on both and it is very exciting for them to talk about. Very little was mentioned about macular holes. Why? Because not much is happening to change the course of treatment. The old SOP was to do the vitrectomy, maybe peel off a membrane covering the macular area then have all patients assume the face down position for at least two weeks. Now, the SOP is do the vitrectomy, maybe use some dye to visualize the membrane better before doing the peel, then have the patient remain face down for a week. Not nearly as exciting to discuss as all the new injectables available for those poor souls with macular degeneration. There are some surgeons using oil occasionally instead of gas. Benefit: positioning is not as essential. Con: You have to go back into the OR to remove the oil at some time down the road.

Here is the silver lining. Not much is changing in the treatment of macular holes because what surgeons are doing now works. It works! The success rate of the surgery is high, even higher if patient compliance is good.

Do you have a question?

I am getting a lot of verbal feedback on the website and the blog, but I am disappointed in the lack of comments posted. SO, I am going to try a new approach. If you have a question, you can ask it here as a comment. I will answer questions with a new post which shoud show up on the first page rather than responding as a comment, which shows up a little deeper into the blog. This way, I hope, your good questions will allow others to benefit from the answer too! Remember, if you are wondering about something, chances are someone else is too! So ask away. Toni