Kes and Alexx go to the Ocularist

[alexxkay]

At long last, kestrell was able to get fitted for her new prosthetics. She asked me to document the process, so I took lots of pictures. A few of them may not be for the squeamish!

The ocularists are still a little un-hip about the whole 'Delerium eyes' thing, so have been largely cropped out of the photos.

Taking the T there.


In the waiting room.


Sitting in the examining chair.


Folding up the cane.


Kes hisses at me for taking her picture with no prosthetics in, when her eyes look sunken.


The first 'tray', through which they will pump the molding clay, has been inserted.


Both trays are in.


Injecting clay into the left eye socket.


...and the right.


Clay has been injected, now waiting for it to set.


Removing the molds.



Wow, this uploading process takes a long time, and I'm paranoid that LJ will eat the post. So I'm going to split this into multiple parts.

ETA: Locking comments due to spammers. If you want more info about this, please contact me privately.

Comments

[tamarinne.livejournal.com]

Wow, those photos of the molds being made (with the tubes in her eyes) are awesomely disturbing!

[stormsdotter.livejournal.com]

Alexx, please lj-cut. Those photos are disturbing and taking up a lot of my friends' list.

[alexx-kay.livejournal.com]

I had intended to do so, and only a typo prevented it. Fixed now, My apologies for the error.

[stormsdotter.livejournal.com]

Thanks muchly!

[prozacnation.livejournal.com]

Just to let you know, it does look disturbing but it doesn't hurt. :) I had that done when I had my scleral shell made.

[jesse_the_k (from livejournal.com)]

The "tray" stage was just as disturbing as I imagined; I'm stunned at the happy face Kes is wearing through out.

The best pic, however, is the first one, where she's channeling a Jackie Kennedy "I'm in mufti on the T" look.

[amy lejeune (from livejournal.com)]

What a truly unique and fantastic story. How anyone could find anything (including photos) disturbing is beyond me.

[prozacnation.livejournal.com]

Thank you for posting this! My friend sent me to your journal because I have a scleral shell and I believe made by the same ocularist as you went to.

I'm from Buffalo NY and went to an ocularist in Boston MA. I was just there last week for a cleaning and buffing.

[snonsumr.livejournal.com]

ah, there you are! I posted the same thing on the last post.

[prozacnation.livejournal.com]

@Whee!!! This is who sent me here! :D

[kestrell.livejournal.com]

I'm originally from NY, and am curious why you didn't end up at LeGrande Associates, or something like that, who travel through various cities from Rochester to Albany. On the other eye, the Boston folks are way way better, even if they are really unhip about letting consumers pick their own eye color.

[prozacnation.livejournal.com]

I'm from Buffalo. If you know anything about Buffalo and eyes you will know the area is 15 years behind. Any surgeries I have had were not done here. My original surgery was performed in Pittsburgh PA in 1978 and 1979 for a removal of a congenital cataract. Two doctors in the country performed cataract surgery on children, Dr. Hiles in Pittsburgh and someone in Washington State. Pittsburgh was closer.

My first scleral shell was made in buffalo in 1996 and a shitty job was done. This was after a doctor here did a procedure he shouldn't have done in 1990 (He was following me up from major Retina surgery I had at Mass General in Boston MA to save my eye because buffalo didn't have the surgical equipment for it). He did Cryopexy to reattach the retina (that was B.S.) and I lost my eye within 5 minutes. He covered up my records and I could never sue him.

The original owner of Ocular Restoration retired and left the business to someone who did not keep up on how to make eyes or use current methods.

My eye was CLAMPED open to get a mold of it. Yes I said clamped - with a metal clamp. It was painful. The mold was unusable because, as she stated, I blinked and it was all jagged. So instead of doing another mold, she used a "stock eye" pulled from a dish of eyes and painted the iris onto it - not separate. It looked fake and was 1 dimensional. That was $2500 back in 1996.

I wore that until my eye changed and I couldn't wear it any longer which was 2002. I had a PPO for insurance in 2004 and wanted to get a new one made. I did not want to go back to this half assed place in Hamburg so I started to research other ocularists in Toronto (which I'm close to), Rochester and Boston.

Rochester (strauss eye) uses stock eyes because I specifically asked when I called. They couldn't guarantee that they wouldn't use one on me.
I also noticed that the ocularist there doesn't involve himself in conferences or write papers on the subject or even head lectures. This was also true at the time for Ocular Restoration. The woman there couldn't even use a computer.

Toronto wouldn't take my insurance as it's Canada and I didn't have OHIP. If the exchange was 65% like it was in 1998-2000 however I would have gone there and insurance wouldn't have mattered. Cost $2500 CDN.

Boston was the logical choice as I had surgery there back in 1990 and my eye doctor was located there. I went to Boston at least once per year to see him for my good eye. They also took my insurance (I had a PPO which covered everything but $300) and I could make my appt there for a cleaning and see my eye doctor all during one trip. They also participated in conferences and made their eye "different" than what I experienced in Hamburg/Buffalo.

I'm surprised that you say they are "unhip." I asked about what I could have painted on the eye and they said anything. This was 2005. They told me that some eyes they made were "holiday" eyes like Christmas decor or Halloween, different colors and even characters painted on them. I went with my eye color but if I had another one made, I would definitely have a Star Wars character painted on it.

Right now My HMO which is self insured will not cover any prosthetic so it would be impossible for me to have another one made unless I completely had to.

[kestrell.livejournal.com]

Wow, I thought Albany was backward and scary. When I posted to my own LJ about the procedure I had this spring, I mentioned that if the procedure or the prosthetic hurts, it was made wrong. I've heard some really horrible stories where the prosthetic is intensely painful and the ocularist says that's normal, and this is for little kids. But I did get my first prosthetic in something like 1980 in Albany, and had this fabulous ocularist named Danny, who is also really cute (I still had one kind of functional eye at the time). He was incredibly sensitive and gentle but things definitely went downhill when he moved to San Francisco, and I've always experienced a lot of ineptitutde and bullying from doctors if I even asked questions, so I empathize.

I don't think we have the same ocularist, though. Is yours in the Boston Eye and Ear building? And whatever I say about them being unhip, they are amazingly talented and practiced int heir field, and they have always been really sensitive about letting you take a breather if the process is stressing you out. When I first came to them over ten years ago, I had a lot of tension and stress from negative experiences from the past, like ocularists who didn't even tell you they were going to remove the prosthetic, they just stuck the sucker thing to your eye and pulled without warning you.

[prozacnation.livejournal.com]

There is only one ocularist in Boston and that's Jahrling on Staniford. I was just there on the 19th for a cleaning. :)

Their work is AMAZING! I'm not afraid to tell people anymore that my eye is fake. When I'm in Boston, residents know what type of medical treatments they have and are proud. I'm proud to say I go there for my doctor(s).

When I brought my original eye in, they were appalled that this was even made for me by someone supposedly board certified. They were surprised I could wear it from 1996-2002

This scleral shell experience was so much better than the one I had in Hamburg.

[kestrell.livejournal.com]

That is just weird then, because Jharling are the same folks who gave me such a hassle about changing my eye color. But I'm glad you had such a positive experience. Whenever I talk about prosthetics I mention that if it hurts, it is not made correctly. One of the reasons I put my experiences on the Net is in hopes that anyone looking for information about prosthetics gets information about that.

Ocularists/eyes

[megan claffey santos (from livejournal.com)]

I just stumbled upon this journal, I am going to introduce myself as Megan a mom of a child with a prosthetic eye (she lost her eye to retinoblastoma at 15 month and now is three and a half years old). Her Rb doctor directed me (and all of his enucleated Rb patients) to an awful ocularist. One doesn't need a license to practice or anything in Florida-heck, even I could call myself and ocularist here. Well since we knew nothing about prosthetics, we trusted our specialist to lead us in the right direction. Come to find out, this man is putting prosthetics in children's sockets that are so big even he needs a metal surgical instrument to remove the eye. He also managed to enlarge the eye by adding base wax at every appointment and shove the eye back into her socket without looking at it and send us on our way. If we tried to ask questions-he was flippant and defensive. She was plagued by discharge and what we later found out, infections. We also found out the eye was so big that the antibiotic drops could not effectively reach the socket.

We have been seeing a new and wonderful ocularist for a while now and my daughter now has a new prosthesis made by him. It is different in feel and very well done (even though he worked off her old shape as to not "shock" her with something completely different). I am not convinced her old eye wasn't a stock eye that was then painted.

So I guess my questions are how did you find out who was up to date and who was not? I mean, our former "quack" of an ocularist is an associate member of the ASO-which means he has taken some classes with them, but to what extent? Obviously as a mother, I am very upset this man even can still practice and he has the biggest practice in FL-seeing 150-200 patients a week. (he is also the only ocularist in FL that works with insurance companies.)

That comes to the last thing I was going to share with you about HMOs. We got a gap exception to see our new ocularist. You need to call your doctor and have them put in the request to the insurance company. It didn't pay for all of the $2000, but most of it.

Re: Ocularists/eyes

[kestrell.livejournal.com]

When I was a kid, from age 3-18, I had an ophthalmologist who was really a jerk, caused me a lot of physical pain during exams, got defensive about this and expressed anger at any complaint I had, and often refused to answer my questions. I say this to explain that I understand how helpless one can feel in trying to make what is already a difficult medical process less awful and have some agency over whom one goes to. I am also just incredibly appalled at how this field gets so little regulation.

That being said, I have two general guidelines:
1. This process should not be painful. I still get really tense whenever the ocularist touches my eyes, probably because I have so many bad associations with previous eye specialists, but the bottom line is, it's not painful. Also, I've gotten a lot better: when I first came to this ocularist, he would offer to give me five-minute breaks to just relax because I was so terribly tense by the entire procedure. This is another sign of a good specialist: he treats your response with respect andnot with defensiveness or anger.
I mentioned this in one of my posts on my own blog: if the procedure is causing you pain that is not inherent to the condition itself--as from an infection or other complication--then the ocularist is not doing it right. If the prosthetic causes pain--as opposed to some *slight* sense of it being too large when first put in--then the prosthetic is not sized correctly. If it pokes uncomfortably at a corner or a contact point on the lid, the ocularist should be tweaking the prosthetic and not ignoring you.
Which leads to rule
2. The ocularist, like any other medical specialist, should be treating you with respect and consideration for complaints of pain or infection. I understand that it's difficult to change ocularists since they seem to operate mostly outside of being answerable to anyone, but I encourage folks to keep complaining about awful and abusive service--tell the eye doctor who referred you, tell any hospital which is associated with referring patients, try the Better Business Bureau or the state office which deals with poor business practices--I'm zoning on which office this is, the attorney general, I think? Even if one can't make these charlatans ansewrable, I hope that the accumalated weight of such complaints may result in these people someday having to answer to someone on a legal level.

Re: Ocularists/eyes

[(Anonymous)]

Hi-
I am worried because my husband is changing ocularists.
I know you don't want to name names, but what city is he in, please?