Worst Pain I Have Ever Felt! - Fort Campbell, KY

My dr had me pretreat with retinA for 3 wks prior...

my dr had me pretreat with retinA for 3 wks prior to the treatment.. went in today got the Levulan put on ...went home for 2 hrs and came back for the blue light... the tech got everything set up.. turned the light on and INSTANTLY above my lips felt like it was on fire within 30 seconds my whole face.. by the first minute I had my hands clenched and my legs were bouncing nonstop trying to manage the pain... there was a fan blowing on me, but it was pointless.. by 2 minutes I had tears rolling down my face, she asked if I would be able to continue I said I doubted it... she said lets try and turn the fan up and see if that helps at all.. she turned the fan on as high as it would go.. while the pain was still beyond intense it became bearable. I made it through the entire 16 min 40 seconds.... progressively through the day my face has gotten redder and more swollen... I showered and washed the vaseline off (they put that on when I was leaving the hospital) and a wet washcloth stored in the fridge has now become my best friend.. I have been putting a moisturizer on every hour or so.. it helps for a few minutes.. what it feels like now is. the worst sunburn I have ever had in my life..

Day 2 had brought about pain.. swelling and crusty...

day 2 had brought about pain.. swelling and crusty spots... now that I am sitting in my very dark room.. I am in a lil less pain... the crusting is def showing up more.... was just the corner of my chin this morning... right now its under my chin.. top of my chin 2 spot son 1 cheek.. 1 spot on my jaw.. 1 spot on my left temple... tmw should be interesting...
DAY3 ok so today my face has crusty spots randomly all over.. and feels like a dried mudd mask.. very tight and plastic-like .. pain is gone ( a weird sting once in a while) and that has now been replaced by ITCHING.. major itching.. can't scratch... so I am constantly poking at it.. the redness is STILL unreal!!
DAY 4 .. starting to peel... my chin is unbelievably red now
...and cracking despite how much moisturizer i put on
DAY5 this is for the birds!!.. my chin has blisters, major peeling going on.. around my nose and my temples are VERY tender... and very red.. my chin still looks like the worst sunburn you can imagine... and NOW my glands under my jaw are swollen and hurting very badly.. calling my dr in the morning... NEVER doing this again I had less pain and an easier time when I had surgery to remove a squamous cell on my cheek.. the scar goes from my ear to my chin....

May 26th

it is now may 26th.... my chin is still healing.. the rest of my face is pretty much normal.. all the ak's are gone except 1 ... my skin is soooo smooth.. I'm updating a few pics so you can see how my chin is now... will post an updated pic of my face as soon as my chin is finally done healing

new pictures

more pics

July 16th

time for an update I'm told ;) .... my skin looks amazing.... I still have 2 small discolored spots on my chin, from the blisters but my Dr says they should fade..... other than that, my skin is soft and even.. no blothciness no actinic spots (oops i do have 1 right on my forehead, right along my hairline that we missed) I had a few freckles on my cheeks from childhood... those are gone... the ones on my nose are gone.... I have been sunblocking my face for YEARS!!!! (over 10 yrs) so every spot on my face was from being a kid in Florida.... I just went away to Chicago for a girls weekend.. and was told over and over again that there was no way I was a Grandma.. :D so now after all the hell is over with.. it was worth it.... My Dr woould like to do 1 more treatment.. I still don't know if I'm willing to try again... we'll see in January how I feel... just got back from walking so after i cool off I'll post a new pic ;)
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I must wonder. When you drove home for the two hour wait--did you receive any light exposure beyond a 100 watt light bulb? Sitting in a living room with reflected light off a floor or wall can activate the Levulan. If the drive home and back was only 8 minutes, unless you wore a sort of shield over your entire face you probably got more activation in the drive than you did in the office. I'll prove it too, and in a few days I'll post horrific photos of what happened to me. The problem was evident: As I drove to work, reflected light continued to activate the Levulan and well, the photos tell all. I was lucky, late in the day I actually started to go into shock but knew how to deal with it. Had you worn a sunproof shield of some sort (and sunglasses) I suspect that you would not have had the burning that you did.
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I had this done yesterday and am getting along pretty well. It just feels like a bad sunburn. The cooling stick really worked. I don't think I could have done it without the cooling stick. Had trouble sleeping last night because I am not a back sleeper and my face burned a little, so my sleep was never very good. Hopefully tonight will be better.
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I just had this done yesterday and felt like my face was on fire the first 15 seconds into the light. The pain has been almost unbearable. Forget sleep....my face is on fire! My boyfriend has washrags in the freezer...my only source of relief so far. He had PDT done yesterday as well, but is not feeling ear the reaction as I am. I had to break out an older pain killer prescription at 4:30 this morning...there is just no relief that lasts. I can't see what my face really looks like yet because of the cream....will keep u posted.
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Did you know an inborn, genetic disease exists were people to accumulate the same biocemical product as used in PDT ? Its name is Erythropoietic Protoporphyria (EPP) and it causes the patients to go through all of this every summer, every day, from childhood on.
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WOW!! I'd be happy with just a lil reaction.... they want me to do it again.. but .. idk yet.... they said they would do half the prep time so an hour with the levulan rather than 2 hrs.. but yeah.. as of right now I'm stll saying no.... it wouldn't be until jan, so I could change my mind...
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Read the attached after I tell you what happened. I went to the same place that did it last time but Dr Hayden no longer there. Dr Greggs did my skin check and said my face could do with another PDT treatment. 10am they put the ALA on, 12.30 pm the numbing cream, 2pm the lamp. I also put cold sore cream (5% aclivor) on my lips and took 3 paracetamol + codeine 1+ 1/2 hours before lamp. Guess what 15 minutes later no pain or redness. I immediately thought no pain, no gain. Asked the doc if the lamp was too far away. He said makes no difference. It was a different lamp than the one Dr Hayden had used, plus Dr Hayden moved it around the face. Went home to my pre-darkened home, ready to stay away from light for 2-3 days. By Dusk I had to little patches of pink, about the size of 50cents on each side of the tip of my nose. The next morning no difference. I went into the clinic today to see the boss Dr Patrick. I had to wait 1+ 1/2 to see him, but waited because I knew Dr Greggs wasn’t in Wednesdays and I didn’t want to offend him. The doctor looked, and said that he agreed that there was very little reaction. He said that the difference with the last time was not the machine, it was the percent ALA that was used. Last time a 20% mix, this time a 10% mix. I asked “Why”. He answered that some people don’t like the reaction, so they changed the dose. I said that you couldn’t publish the before and after pics if you half the dose. No pain, no gain. He was very nice and suggested they redo it in 2 weeks. For free. He also asked if there was any tingling today when I am in the sun. I said that I had not been in the sun except in the car, and it stung a bit when I was driving towards the sun. He then suggested I go sit in the sun for 15 minutes and the process will continue. He said in the old days they didn’t have the lamps and put the ALA on and sent the patients home to sunbake for half an hour. So I did 20 minutes at my friends place, the 15 minutes each side on my balcony, and we will see what happens with the winter sun. Depending on the result I might wait 3 weeks. Don’t want to have the procedure on sensitive skin, because I’m sure they will fry me next time. hahaha. http://www.thevictoriancosmeticinstitute.com.au/photodynamic-therapy/
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how is your face now?
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will be taking 3 Panidol with Optizorb (recommended for shingles - extremely painful) and will be getting numbing cream put on.(works for tattoos, I hear)
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Have an appointment for a second go tomorrow. Wishing I hadn't read the above. Brings back painful memories, no pun intended. Swore I wouldn't get it done again last time, (3 years ago) but loved the results.
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Am having it done tomorrow for the second time. Wish I hadn't read this post. Bought back memories.
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I had it done in early Feb 2013 and i will never have it done again ! It was exactly as she describes it above. You literally bounce your knees up and down to deal with the pain that feels like needles pricking your face. Way too intense ! And mu doctor never called to check on me or see how I was doing - I think it's all about the machine and making money.
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how are you now???
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was someone with you the whole time during treatment? Did you get a cooling stick to use with your treatment?
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Looking good!!  Thank you for the update and new picture.

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finally an end in sight.. posted updated pics from the last 2 weeks I actually didn't take ANY for a week because it looked so awful.. I gave up on the steroid ointment he gave me for the blisters and started putting peroxide on them a couple times a day THAT is what finally started drying them up.. now I can actually leave my house without being stared at. My dr said he would like to do one more treatment but I told him this will never happen again I would rather go through another surgery than this
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How are you? The recovery?
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Well done you! It will be worth it I'm sure. I used RetinA for a 6 months and then stopped six days before treatment. One hour with cream and longer on the face.
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Ouch!!!  Oh my goodness this sounds horrible!   Keep posting the updates with pictures.  I really want to know what your final results turn out to be.

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Wow! I was told to avoid RetinA Before my treatments. If I had to guess that would make the pain a lot worse???
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