Hurricane Keratopathy.

[Silhorn]

Hello,

I have had a particular problem for about 1 and a half years now. My doctor does not seem to know how to fix it. I would like to try asking the doctors here if they know anything of how to fix it or just some advice.

Let's start with some basic information.
Age: 25
Job: Electrician.
Vision: Short - Sighted (Can't see far) since, very young maybe 5-10 years old?
Been using contact lense (Acuve brand) for maybe 10 years. Glasses worn before contact lense use and have not worn them at all since problems started occuring.
Other medical problems: No

History:
Sorry, i cannot be any more accurate than what I am about to give since I had no idea it would take this long to try and fix the problem. If I knew, i would've made some kind of log...

Now, I know this is a looonnnggg topic, I'm sorry. If you don't want to read it then no hard feelings I understand but if you do, and your a doctor that can give some advice or help, it would be much appreciated.

I think it was the end of 2008 that while I was still wearing contact lenses I had noticed that my left eye was getting blurry week after week. I notice this when I was finding it harder to read words on the computer. This was happening for about I think 1-2 months. I then decided to go to my local eye doctor.
He gave me if I remember correctly:

Maxidex
and
FML - fluorometholone

And told me to take medicine 1.  in left eye for one day, then medicine 2. in left eye for the next day, then medicine 1 again for the next etc... Pretty much rotating between the two eye drops for each day. Now I am not 100% sure if it was for both eyes or just for the left.
When I came back to the next appointment my left eye returned back to normal but then my right eye had now started getting blurry. He then needed to refer me to another specialist. I can't remember whether he gave me any new medicines before referring me though. But it would not be anything different than the ones I have listed already or going to list further down this message.

So from about February 2009 I have been with my second specialist. We will call him Dr B for reference if needed, just to not confuse you. Dr B has since given me medicines to try such as:

Chlorsig 4g - Chloramphenicol 0.1% 10mg/g
Hycor Eye Ointment 0.1% 5mg - Hydrocortisone Acetate 10mg/g
And probably one or both of the other medicines I listed earlier.
(right eye only)

These medicines are not taken all at once, it's just a list of medicines we tried since February 2009 to about Early 2010. These did not seem to help at all.
Also during a time around early 2010 Dr.B had said he did some research and found out my condition is called, Hurricane Keratopathy becuase the swirling pattern noted in this condition is very similar to my eye. He told me this is a very rare condition, only a few documented cases. He said what other people did to fix this problem was use nothing but regular eye drops very frequently (I tried to about 4-6 times a day) every day. So we tried this for 6 months, but little to no change.
Dr. B then refered me to another doctor before he would recommend a procedure which involved scraping away of the cells in my eye until the problem went again. He said this doctor has more experience than him.... We will refer to this doctor as Doctor C.
Dr C. told me to take:

Hycor Eye Ointment 0.1% 5mg - Hydrocortisone Acetate 10mg/g
and
Retinoic Acid - 0.1%

This is done rotating the medicines each day. So one drop for medicine A, one drop for medicine B next day etc...

Dr C also mentioned the scraping idea might not be a good idea and there is another thing where you could take some cells out from the now good eye (left) and grow more in the lab, then put them into the right eye but she said this technology might need more work before it can be perfected.

Now I was doing this for about almost 2 months, came back to see doctor B, then kept doing the same thing for maybe 2-3 months. Now, after a few weeks when I went to see doctor B again i decided to frequently use the regular eye drops again on top of what I was already doing and it had gotten up to a point when my right eye was getting better up to i'd say, about 80-90% vision. But it got worse again without changing anything but still better than what I had started with.
Went to see doctor B again. He said my left eye was now getting a growth as well! I also confirmed this to him because I too did notice my left eye vision a little bit worse than what I was 2-3 months prior. He then got me to use on my right eye:

Retinoic acid every 2nd day.
dexamethasone sodium phosphate - 0.1% every day 4 times per day for 2 weeks, then 3 times per day for 1 week, then 2 times per day on going...

And on my left:
dexamethasone sodium phosphate - 0.1% every day 4 times per day for 2 weeks, then 3 times per day for 1 week, then 2 times per day on going...

I had been doing this now for about 1 month. Now since then these are my results...
My right eye no noticeable change. Doing same regine to this day.

My left eye:
After almost 2 weeks into this regime my left eye had gotten noticeably worse. Clearly it seemed the medicine was making my left eye worse. I had then stopped taking the dexamethasone for my left eye and just on my own decision use retinoic acid on my left eye every second day because that's what I thought was helping my right eye get better for the short period of time last time.
Have been doing this for about 2-3 weeks now, no noticeable change (or maybe just the slightest? not sure) though it has stopped it from getting worse again.

I am now also using regular eye drops frequently every day too on top of my current regime.

I am not very good at explaining things so any thing you want to explain more clearly please tell me and I will do so.


Thankyou very much.

[John C Hagan III, MD, FACS, FAAO]

-

[allmymarbles]

Members have reported corneal problems with the more recent Acuve contact lenses. Search posts on this subject.

[Silhorn]

ok Thankyou for your help and advice!
I will see if i can find another doctor for a second opinion with the qualifications you gave.

[John C Hagan III, MD, FACS, FAAO]

Generally a cornea specialist is a MD that has had a 3 or 4 year ophthalmology residency then take a year extra training in cornea work (Fellowship) and restricts their practice to cornea, refractive and cataract/IOL surgery.   So the question is does Dr. B have a cornea fellowship.

I see a lot of second opinions. Sometimes the patient brings in reams of paperwork and tests and wants me to look at them then examine the eye and give a second opinion. Other people come in are very secretive, will volunteer almost nothing and keep saying "I want to know what you think not the last three doctor's I've consulted". The former consults are more helpful to me.

JCH MD

[Silhorn]

Hello and thankyou for your reply.

I have stopped wearing contacts and been wearing glasses since my first appointment to the first doctor.

I have done a bit of searching online for the word corneal specialist and I keep finding doctors who specialize in Laser surgery, is that the kind of doctors your referring to?

I have also been looking up my doctors name on the internet and their titles are:
Corneal and General Ophthalmology - Dr. B
Clinical Ophthalmology & Eye Health - Dr. C

Are these the same as cornea specialist?

Also, one more thing. If I go to a cornea specialist for a second opinion, do I tell them i've been to another doctor for the same problem before and what i've done with them?
Because I've been told by people before that say something like: don't tell this doctor that you went to see that doctor because they won't be happy and won't want to treat you. I don't see why not but you as a doctor what is your opinion?

[John C Hagan III, MD, FACS, FAAO]

I am not impressed with the diagnosis of hurricaine keratopathy. The text book "Cornea" says its a whorl shaped opacity on the surface of the cornea due to toxic medications used in corneal transplantations.

You have not had a corneal transplants and are not on medications that cause the toxic pattern (which goes away quickly with stopping offending medications and using steroids).

Cornea whorls are very common usually due to use of amioderone and do not cause visual difficulty, some other medications can cause them also and they appear in a rare systemic disease Fabrey's disease.

I would recommend you see a cornea specialist at a medical school. And I hope you've stopped wearing the contact lens. You may have something like basement membrane disease or recurrent corneal erosion.

JCH MD