My Scleral lens fitting UK experience - Ken Pullum - advice needed

[ScottishDave]

Hi,

Thought I'd add my experience with sclerals that I had fitted by Ken Pullum at his private practice.

First of all I'd like to say that Ken is great. He his very understanding and offered as much time as I needed over my day and a half with him. He understood that I had traveled a long way (7hrs by train) and tried to accommodate me the best he could.

I has my appointment on the Friday at 9:30am and over the course of the day I think i spent a good 3-4hrs with Ken and his staff. I also went back in on the Saturday and spent another hour or so with them over the course of the morning. All for the £300 consultation fee - well worth it.

I tried the lenses over the course of the Fri and Sat and am still not sure whether they are for me or not. I could feel the lenses in both eyes (not painfully) but when i rolled my eyes from side to side is when i felt them the most. The feeling was like they were slightly snagging on both eyes and then unsnagging as I move the eyes from side to side. It's hard to explain!!

I had them in for 4 hrs the first time during the afternoon and took them out at 5pm. At 9pm I fell asleep in front of the telly and woke up at 9:45pm. Both eyes were stuck shut with mucus, this has never happened before so it must have been down to the prior lens wear. Durning that night I woke up 2 or 3 times and each time my eyes were stuck shut again. Ken was not really concerned with this.

The next day Ken had me in the lenses for a few more hrs before I had to go home. I had the same slight feeling in both eyes as i had the day before. Ken said he still wasn't sure whether I would be suitable or not (less than 50% of his patients can tolerate them) so he would like for me to have a longer trial. He has offered to send the lenses up to a colleague of his in Scotland for me to do the extended trial before I commit to the purchase or not. (£1,500 total)

Has anyone else had a similar experience with the lenses feeling like they are snagging in the eyes? Has it ever went away.

Why do Boston take 2 weeks to fit these lenses when Ken managed it in a few hrs?

[Reggie]

It doesn't take the whole two weeks to make PROSE. From my experience, most patients have their own lens after the first few days depending on how complicated their condition is. You start out by wearing "old" lenses from previous patients, and then make you your own lenses, and they continue to make changes to the design until they have the best fit for you. They give you the 2 week period just so you understand that you just won't be in and out of there. I have seen extreme cases that take longer than 2 weeks though.

The lenses shouldn't feel more uncomfortable while you move your eyes side to side. The fact that you have a "snagging" feeling makes me to believe that the lenses aren't the best fit for you. Then again, I haven't read much about Dr. Pullum or his lenses. Hope you find something that helps.

[nors]

I recently had lenses fitted by Ken too. I have a similar feeling to what you describe as the snagging when moving eyes. I also get mucus build up whilst wearing the lenses. I was given a two week follow up appointment which will be next week. I am hoping they will be able to do a refit which make them more comfortable. Will post again to let you know how they did the refit.

[ScottishDave]

Please do Nors, that would let me know whether the fit might not be right, although Ken seemed to think the fit was great.

[Anthony16]

Hi Dave,how are u?
As u know,im also in the uk.
Personally,i would not think Ken Pullum would be at the same level as BFS or Dr Gemoules when it comes to getting the right fit.
U may get lucky,however.
Just my opinion

[ScottishDave]

Hi Anthony,

Did you eventually get to see Scott Kornfeld? I'm still wearing the moisture chambers he made for me, mainly at work.

You may be right about Ken but he charges £300 for a consultation and £1,500 for the lenses, I fear going to BFS would cost a great deal more!! Part of the reason i went to Ken first was to even to get a small sense of whether then lenses might help me, if this proved right i could have progressed to BFS. I'll try Kens lenses for a few more weeks i guess then make a judgement.

[Anthony16]

Hi dave,yes i saw him recently.Thanks for your tips about the LIRR.I took the Ronkonkoma bound one.Had a bit of trouble finding Woodbury optical but got there in the end.
As far as i know(and i may be wrong),Dr Gemoules in Texas in 70% cheaper than BFS and some argue his scleral fitting is better as he takes a scan of your eye to adjust the lens to the correct size.
May be worth a look.
I know BFS is incredibly expensive.

Hi Anthony,

Did you eventually get to see Scott Kornfeld? I'm still wearing the moisture chambers he made for me, mainly at work.

You may be right about Ken but he charges £300 for a consultation and £1,500 for the lenses, I fear going to BFS would cost a great deal more!! Part of the reason i went to Ken first was to even to get a small sense of whether then lenses might help me, if this proved right i could have progressed to BFS. I'll try Kens lenses for a few more weeks i guess then make a judgement.

[spmcc]

I think it's wonderful that Ken Pullum gives you the option of trying out the lenses before committing all that money. Dr. Gemoules does not.

[Anthony16]

Did not read that part
Do BFS allow u to try them before commiting the money?Iv read about people who have 8000 dollar sclerals just sitting in their bathroom.
May well give Ken a try if its only the consultation fee.
Really wish there were some official stats on the percentage of patients who can tolerate sclerals

I think it's wonderful that Ken Pullum gives you the option of trying out the lenses before committing all that money. Dr. Gemoules does not.

[Reggie]

^Hey Anthony, I tried to respond to your pm but your inbox is full. Shoot me another message once you clear it out.

[Guest]

Do BFS allow u to try them before commiting the money?Iv read about people who have 8000 dollar sclerals just sitting in their bathroom.

Once they have the best fitting trial lens, you wear them for several hours to try and figure out whether or not you want to commit to having them continue with the custom fitting process. For me, if I had decided to stop at the trial lens, I would have saved the $3600 cost for the custom ones. (Still would have to pay the $6400 consult fee... although my government health plan is paying for that part)

And yes, it's true that there is no guarantee that further customizations will make the lenses wearable for you... all you can do is make a best guess and cross your fingers!!!

Really wish there were some official stats on the percentage of patients who can tolerate sclerals

Can't remember for sure where I saw this (think it was somewhere on the BFS website), but something like 50% of post-LASIK's can tolerate them, percentages are generally higher for other causes. When I was there, they were very frank with me about my odds of success/failure with the lenses.

[Guest]

Here is a link...

http://www.bostonsight.org/For-Docto...dications-List

If you click on the conditions listed, a lot of them (including dry eye) have stats on what percentage of patients were helped by the PROSE lenses.

Some specific stats that might be of interest to people here:

And I stand corrected on the post-lasik stats... "In a recent survey, 61% of patient with post-LASIK complications reported significant success with PROSE." ( http://www.bostonsight.org/For-Patie...ons/Post-LASIK )

Sjogren's: "In a recent survey, 85% of patients with Sjögren’s syndrome reported significant success with PROSE" ( http://www.bostonsight.org/For-Patie...grens-Syndrome )

GVHD: "76% of patients with ocular complications from GVHD reported significant success with PROSE. " ( http://www.bostonsight.org/For-Patie...t-Disease-GVHD )

[ScottishDave]

So SAAG sclerals are now $10k from BFS? Wow, that's gone up alot from the $7k I have read on previous posts.

[Guest]

Yes, it's definitely a significant sum, isn't it! But they're pretty good at getting stuff covered for patients... I had for sure $6400 of that covered by my provincial government health plan. BFS is going to try billing the full sum, would be cool if by some miracle they got ia all covered... but I'm trying not to get my hopes up!

[sazy123]

I saw Ken, Nice he offered you a trial before buying he did NOT offer that to me... and considering i was so unsure and panicking about whether i should get them or not coz they felt uncomfortable. but i wanted to try them so badQ!!!! kind of makes me mad. I threw 1500 down the drain.

Anyway, i assume that boston makes several pairs to get the right fit. Ken makes only one pair and it either fits or doesnt. But not all will tolerate them IMO- depends on your dry eye. I have inflammed eyelids- so they just irritated my lids, plus the fit felt not quite right, and i had that thing when looking around, my eyelids still burned. I hated getting them out and got scared evertime.