beware of sclerals

[needhelp640]

hello all!

after contacting the BFS for an appointment they told me to fill out a referral form from my local opth. When i took the referral form to him he refused to sign it and told me that sclerals might hurt your eyes in the long run especially if you already have dry eyes. he has no incentive to tell me this... just had to let everyone know that those lenses are not necessarily risk free. they're still new and we have no idea what long term consequences of wearing them are. i sent an email to bfs asking them if there were any risks or complications that might happen from wearing the lenses for long periods of time and i got no response.

[Rebecca Petris]

I would like to know what is behind your doctor's response. What specific risks did he identify and on what sources or medical evidence? You should ask him for more details. Also nag BFS for failing to respond to your email. They certainly don't have anything to hide - this is an FDA approved device with ample published medical literature and many, many years experience to support it.

Sclerals are not new.

[Connected Visions]

NeedHelp640,

You share your eye care provider's concerns about scleral lenses. It is important to note that any treatment or product can be associated with adverse effects, particularly if it is not administered or used appropriately. We cannot speak to the effectiveness of scleral lenses fitted by other providers, but we can say that the ability to successfully replace or support impaired ocular surface system functions, reduce symptoms and improve vision is determined by three interdependent factors:

• The individual patient's needs, functional goals and capabilities
• The specific underlying condition(s) being treated and desired treatment outcomes
• The success of the fit- which is determined by the expertise and skill of the treatment team interfaced with the effectiveness/flexibility of the technology/tools/materials required to design and manufacture the devices or lenses

As Rebecca mentioned, BFS and our PROSE Clinic partners have treated over 1,000 patients with dry eye over the last 19 years. The devices used in PROSE have been approved by the FDA since 1994 for the treatment of ectasia and ocular surface disease (including dry eye). We have over 40 peer-reviewed research papers, publications and talks documenting the effectiveness of our treatment. Please visit www.bostonsight.org/research for a complete list, but one relevant piece of research from the American Journal of Ophthalmology shows that PROSE "significantly improved VA [visual acuity] and visual functioning in patients with corneal ectasia, irregular astigmatism, and ocular surface disease who had failed conventional therapies."

PROSE treatment has also gained wide recognition and acceptance within the world of ophthalmology and optometry. PROSE is currently provided by 12 top-ranked academic medical centers in the US and clinics abroad; including the Doheny Eye Institute at USC in Los Angeles, CA (ranked #9 in the US by their peers) and the Alkek Eye Center, formerly the Cullen Eye Institute, at Baylor College of Medicine in Houston, TX (ranked #14). Additionally, in 2010 almost 80% of patients treated with PROSE at BFS had their treatment covered by insurance and/or financial assistance.

In addition to all of our bona fides, please let me connect you directly to our New Patient Affairs Coordinator, Nancy Lemist:

“Hello Dry Eye Zone members. I wanted to take this opportunity to introduce myself to the DEZ community personally. I have been with BFS for almost two years and recently took on the role of New Patient Affairs Coordinator.

As many of you are probably aware, every patient is entitled to request medical notes from his/her doctors. In terms of our intake process for PROSE treatment, we ask patients for EITHER a referral from their eye care provider or specialist OR, if that is not possible, the last medical note from their eye care provider. If you or your doctor are uncertain about the potential benefits of PROSE for your specific condition, you may find it helpful to get a second opinion before moving forward.

In response to NeedHelp640 specifically, I am sorry that you did not get a reply from us when you last called. I would be happy to answer any questions you have regarding BFS or our treatment. And if you would like to pursue a second opinion, I can try to help you locate a doctor in your area that is familiar with PROSE treatment.

Thank you and please let me know if I can help answer any other questions.”

Nancy Lemist
New Patient Affairs Coordinator
Boston Foundation for Sight
www.bostonsight.org
email: www.bostonsight.org/contact
Phone: 781-726-7501

[shanku]

Am happy to find this discussion on the forum.

My corneal specialist from University of North Carolina (listed as Best Doctors 2001-2010) also warned me about using scleral lenses on my severe dry eyes. He says that after all scleral lenses are a kind of contact lenses and comes with all the associated complications like corneal infections, scarring, fungal ulcers (from associated use of steroid drops to fit the lenses in a dry eye condition). By using the lenses I am setting myself up for lot of risk, since my eyes are walking time bomb and and once the cornea is damaged beyond repair, I will have no choice but a corneal transplant. He suggests me to rather do eyelid surgery to address my eyelid closure problem to address the root cause; He gave me this analogy - why put a tarpaulin (lenses) on a broken roof when repairing the roof is the right step....how long can the furniture be saved using a tarpaulin...not long, right! Also, lenses do not help eye closure problem during sleep. Recommending these lenses will be a malpractice in my case and may be a case for potential lawsuit.

This Cornea Doctor's diagnosis include following - (a) lagophthalmos (b) exposure keratitis (c) incomplete blinking (eyelids do not meet near the nose end) (d) proptosis (d) eyelid retraction (f) MGD.

Thanks!

[jenny2008]

sounds like with sclerals-its just like w/ taking drops or pills-there is always a risk but sometimes the benefits outweigh the risks..

[tearless2]

Hi,

I read your post with interest. What type of surgery are you planning to have on your eyelids? Previously, you mentioned gold eyelid weight implants. Are these still a possibility?

Have you gotten a second opinion on the surgery? on the sclerals?

Are you still considering lipiflow?

Sometimes I wonder about asking an eye surgeon if they recommend surgery. Isn't it in their financial and scientific interest to do the surgery? Plus, they've seen it work on other people. Just as I am sure if you asked a BFS person if they recommend sclerals they would more likely say yes since they' ve seen it work on other people. Has your doctor EVER recommended sclerals for anyone? Do any of his patients have them?

Do you know or have you spoken with anyone who has had this same procedure done? I don't remember many postings on this surgery here.

[Rebecca Petris]

I don't think it's right to look at dry eye treatments in a black and white fashion. There is no medical dry eye treatment I have ever heard of that can appropriately be used on EVERY patient, or that is appropriate for NO patient. What is a miracle for one patient may be malpractice for another. For patients whose primary problem is eyelids, eyelid surgery may be a great fix. (Not all of them though - many people whose dry eye stems from eyelid trouble got it from eyelid surgery in the first place and may not even be eligible for more eyelid surgery.) Ditto for conjunctivochalasis and excision. Or serum drops, appropriate for some and not others. Or steroids. And so on. So it may be perfectly right of your doctor to say, no sclerals for you. Fair enough.

One thing that would be helpful to clarify, Shanku, is whether you're saying your doctor says sclerals are wrong for YOU or are dangerous in general (wasn't entirely clear to me from your post). I'd be very surprised at any doctor suggesting that therapeutic use of sclerals in general is wrong. That's not scientifically sound, from all that I have read of the medical literature about them over the years. There are a ton of keratonics successfully wearing them - and for people with advanced keratoconus, sclerals are often a great alternative to corneal transplants which carry all the risks of rejection, etc. In fact many people with failed transplants turn to PROSE afterwards. Patients with Stevens Johnson or GvHD in excruciating pain and at risk of permanent vision loss from scarring have their lives literally restored by using PROSE or other sclerals. - As for myself, I can't see without them, I've used them safely and successfully for six years, and most importantly, there simply is no safer alternative for me in my situation with my diagnoses, so it's like jenny2008 mentions - when benefits outweigh risks, you go for it.

[shanku]

Hi tearless2,

Surgery recommended by Oculoplastic surgeon is - gold eyelid weight implant; I have taken 2nd opinions on it and other peer surgeons mostly agree, except one who recommends medial/nasal tarsorrhaphy.

Now same Oculoplastic surgeon performed ingrown eyelash electrolysis treatment on the left eye in 2009; I was unaware of the risk on this procedure and was not sure if that was serious enough to go for this treatment as I was not experiencing much issues from it, doctor just suggested it during a routine checkup. After doing it now my left eyelid is more deformed(lowered) causing the lagophthalmos move severe in that eye compared to the right; eyelashes are also uneven and missing in that same eyelid. some experts who reviewed my case think that that was wrong move & made following comment:

The combination of rosacea and allergies combine to form an underlying, seething, low-level, chronic state of inflammation. This combination could trigger the meibomian gland inflammation leading to the poor lubrication of the corneas. The same low-grade level of inflammation could account for an extra-strong healing response after the lid and eye lash cautery, leading to lid distortion and retraction—sort of like a gasoline-soaked rag and a spark.

I have connected with couple of other patients who have undergone eyelid surgeries and am yet to find good opinions about these; Those surgeries have left their eyelids deformed and painful & not good results. So, I am kind of scared that those are not a perfect solution either and not an one time done deal - may need several of those and not sure about the results they are going to produce.

So, I wanted to exhaust non-surgical options possible before going for a surgery; and that is where Boston sclerals come into picture; I thought that may give me the daytime protection and TE goggles can provide me nighttime protection.

I do not have answers to following:

Has your doctor EVER recommended sclerals for anyone? Do any of his patients have them?

Do you know or have you spoken with anyone who has had this same procedure done? I don't remember many postings on this surgery here.

I also did not find many postings on this surgery in this board. Following is the only thread I have located on another external forum with some relevant details:

http://www.anausa.org/smf/index.php?topic=10658.0

I get your point that both sides have their successful and unsuccessful examples.

I did seek consultations from other reputed doctors like Dr.T & Dr.L on my case and they readily agreed that sclerals is a good idea for me before surgery; if that fails then surgery may be unavoidable. Now these out-of-station reputed doctors have seen me only once and my local corneal expert has been periodically following my case for last couple of years. Moreover, in case of any issue I have to rush my local doctor who did not recommend it to start with; so, I am in a catch 22 situation.

I have had LipiFlow in mid-Oct; just 2 day after the procedure I experienced severe pain/redness in my left eye and I was diagnosed with very bad corneal scarring which has not yet healed. Doctor said that it is from a trauma but am not aware of any such thing expect for that procedure. So, many a time I doubt that may be something with this procedure may have caused this scarring as this device is placed close to the cornea. As for the MGD, the doctors now say that my right eye has improved but left eye(worse one) is still not better.

Thanks for this discussion.

[shanku]

Hi Rebecca,
Thanks for your comments. Got your point. I do not know whether this doctor thinks sclerals dangerous in general. In my specific case, my own opinion - the risks from sclerals may be lower than the eyelid surgery; Also, the benefit from surgery may not result in immediate relief and it comes with questionable outcome, long recovery, many a times irreversible in the sense they can not restore the pre-surgical original state. Also, There is always a chance that it does not help me as expected and then I shall be left with more deformed eyelids (than I currently have) from the surgery on an already very problematic eye. Thus I wanted to exhaust non-surgical options possible before going for surgery. Hence my preference towards sclerals. But my local doctor do not agree.

I sometime wonder how much reasonable are current dry eye treatment options. Why do we see so much diverging viewpoints emanating from these dry eye specialists for same patient. Seems to me that they do not know understand this disease as well as treatment options very well. In our work environment, we get folks with different viewpoints to come together and agree on something. Unfortunately in case of medicine, patient can not get these doctors to discuss and agree on the treatment plan suited to patient's specific case. So, the poor patient has no choice but to choose the treatments on his own - based on his/her own understanding of risks/benefits. This is the case in USA where we have most expensive healthcare system in the world.

Thanks again!

[Rebecca Petris]

In our work environment, we get folks with different viewpoints to come together and agree on something. But in case of medicine, patient can not get these doctors to discuss and agree on the treatment plan suited to patient's specific case. So, the poor patient has no choice but to choose the treatments on his own - based on his/her own understanding of risks/benefits.

You raise such an interesting (and frustrating!) point here, Shanku. These are issues so many people here face:

When experts contradict each other, how do I deal with that, how do I come to a conclusion about what to do?

Is one right and everybody else wrong, or do they all have some important piece of the puzzle and if so how do I determine which?

Why does every doctor seem to look at me like a nail for their favorite hammer, and how do I extract useful information from my examination in spite of this approach?

What do I do when a doctor gives me a whole smorgasbord of treatments to choose from and puts the burden on me to choose?

Would the REAL expert please stand up already? Does anybody really get the big picture of my eye issues?

In chronic disease, increasingly we're faced with these questions. Instead of being patients of doctors, we're more like consumers of competing consulting services.

[shanku]

That is nicely put Rebecca! Esp. this one, could not agree more!

Instead of being patients of doctors, we're more like consumers of competing consulting services.

[tearless2]

I don't know if this is possible but it might be worth it to ask someone at BFS could direct you to someone with lagopthalmos who was helped by sclerals? or ask what the risk is of corneal infections, scarring, and fungal ulcers that your doctor mentined.

It is really confusing when you are getting conflicting advice from different doctors. It is hard being your own advocate when you are a layperson. I wish Dr. House was available for consult.

I am VERY curious regarding Rebecca's point of whether your doctor doesn't think sclerals are right for just YOU and your specific condition or not for anyone with severe dry eye issues.

Please keep us posted on your decision, I hope you find relief soon.

[Styx]

There's a lot of nonsense on this thread

I'd like to make an addendum to (or answer) one of Rebecca's questions. If you have multiple "experts" providing conflicting advice:

1) Find a nearby medical library at a university, etc.
2) Start using pubmed to research the answer and find relevant articles that address the topic of your concern. You can find the libraries at the university for free in most cases.
3) If there aren't articles published on the topic of your concern, your doctor is either a) full of BS, which is typical or b) talking about something that he hasn't published that is so cutting edge and untested it's very unlikely that you would want to put yourself at risk with the treatment he's advocating. And by the way, b) is mostly just a hypothetical for completeness sake. If you're being treated with something and it's not in the literature, time to find a new doctor.

Nothing turns an expert into an idiot faster than the peer-reviewed literature. Personally, I wouldn't bother asking a physician for advice in the first place, but there is a learning curve associated with my solution

As for the BFS lenses, they are very safe as multiple empirical trials have demonstrated across an array of conditions, and the doctor that said otherwise is unequivocally wrong. It's that simple.

[Guest]

There's a lot of nonsense on this thread

I'd like to make an addendum to (or answer) one of Rebecca's questions. If you have multiple "experts" providing conflicting advice:

1) Find a nearby medical library at a university, etc.
2) Start using pubmed to research the answer and find relevant articles that address the topic of your concern. You can find the libraries at the university for free in most cases.
3) If there aren't articles published on the topic of your concern, your doctor is either a) full of BS, which is typical or b) talking about something that he hasn't published that is so cutting edge and untested it's very unlikely that you would want to put yourself at risk with the treatment he's advocating. And by the way, b) is mostly just a hypothetical for completeness sake. If you're being treated with something and it's not in the literature, time to find a new doctor.

Nothing turns an expert into an idiot faster than the peer-reviewed literature. Personally, I wouldn't bother asking a physician for advice in the first place, but there is a learning curve associated with my solution

As for the BFS lenses, they are very safe as multiple empirical trials have demonstrated across an array of conditions, and the doctor that said otherwise is unequivocally wrong. It's that simple.

You summed it up perfectly! VERY well said! Granted, having insanely dry eyes makes doing this kind of research a challenge (to put it mildly), but if you haven't yet found a really good knowledgeable doctor, then arming yourself with the kind of research Styx talks about is crucial to a) recognizing a good doc when you've found him/her (ie. does their advice jive with what you've researched?) and b) knowing what treatments are most likely to help based on the fact that there is real research behind them.

A link to PubMed: http://www.ncbi.nlm.nih.gov/pubmed/

If your eyes are really having a tough time, I highly recommend you read the DEWS report: http://www.tearfilm.org/dewsreport/p...DEWS-noAds.pdf You can skip ahead to the chapter on the management and treatment of dry eyes - everything in this document is referenced, and any decent doc will either already know about the treatment protocols discussed, or know enough to know that this document is full of info. that they can trust. (Thanks to Indrep for this... way back he's the first one I saw posting about the DEWS report, and when my eyes were at their worst, this document saved my eyes a lot of reading time... ie. faster than searching pubmed).

In case you're wondering if your doctor will REALLY believe in what the DEWS report says, you should know that the DEWS report is referenced in dry eye treatment guidelines that are published in reputable well known journals. And yes, the DEWS report discusses the potential benefits of scleral lenses.

[tearless2]

Yes, it is a great idea to research treatment options as a supplement to what your doctor recommends. Look into sclerals vs. the surgery. What has statistically had the least number of side effects and the best outcomes. How many people have had his done? I also think looking into if an approach is reversible is important.

Research your doctor’s concerns with sclerals and make sure you feel comfortable with whatever choice you make.

However, I think it is understandable that different doctors may take different approaches. I don't think choosing the best option for treatment is as simple as reading some peer reviewed articles on the subject and then using a cookbook approach especially with complex cases.

Medicine is a science but at times it is an art form. Every person is different and comes with a different set of medical issues. Otherwise we would be getting treated by a computer program that has all the data from journal articles and not a creative, thoughtful and (hopefully) knowledgeable human being.

I am not sure what the contraindications for sclerals are, but it's important to find out what your doctor’s concerns are and research them. Always push for a thorough explanation of why your doctor is or is not recommending something and if they don't answer or return your call...then it's time to move on and find a better physician.