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After 9 years having survived SJS/TENS, I have finally found relief

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  • After 9 years having survived SJS/TENS, I have finally found relief

    About 9 years ago, I was in basic training for the Army. At the very end of my basic training I started getting symptoms of SJS. I was diagnosed with TENS and admitted and flown to a burn unit two days later. I went from Ft. Jackson, SC down to Fort Sam Houston (BAMC), TX. I was in ICU for 30 days and a burn ward for 30 days recovering. It was the hardest thing I have ever gone through. 65% of my body was affected. My skin was stained black from the silver nitrate. My skin was left with scars showing where it fell off. My eyes obviously left me with a lot of issues. Dry eye, severe redness, pain, scratchiness, double vision, headaches, infections, photophobia and no social life. All this on a daily basis. I have had two surgeries since 2003. I had to have grafting done on each set of eye lids because my eye lashes were pointing towards my eyes scratching them very badly causing a lot of pain. After trying almost every type of treatment out there to help with the dry eyes i.e. fish oil, restasis, eye drops, hot compresses, surgeries…I have finally found relief.

    Two months ago, I went and visited with Dr. Greg Gemoules in Coppell, TX. He specializes in making custom made scleral lenses for patients with all sorts of eye issues. During our initial appointment, we discussed my goals, expectations and what exactly these lenses would do to help my situation. I explained to him all the problems I was having on a daily basis and that I was desperate for help. At this point, I was nervous because this was my last resort. If this wasn't going to work, I didn’t know what I was going to do. After 9 years of pain, vision loss, and severe dry eyes, I needed a miracle.

    We decided to move forward with the lens fitting process. Initially, he took scans of the surface of my eyes, checked my vision and ordered my first pair of lenses. Dr. Gemoules has a patented method for the fitting process that doesn’t require the use of trial lenses. From the very beginning, his lenses were custom made to fit my eye. My eyes are so sensitive that it would have been extremely painful if he had done trial lenses over and over again. Dr. Gemoules is passionate about his work. He loves what he does and he genuinely cares about the patients he treats. He worked diligently and took the time to make sure the lenses I wore fit perfectly.

    Now that I am wearing these lenses every day, my vision for my left eye went from 20/40 to 20/15, and the vision in my right eye (with double vision) went from 20/70 down to 20/20 with NO double vision. My eyes went from being red all the time due to dry eyes and my eye lids scratching my corneas to being white with no discomfort at all. The lenses are extremely comfortable and can wear them all day, only having to change the fluid out once or twice.

    I am extremely grateful for everything Dr. Gemoules did for me and I am thankful I met him. I can see the light at the end of the tunnel and can feel my life has been given back to me. I feel more confident when I meet people and can feel my career will be much brighter. If you decide to get sclerals, I wouldn't go anywhere else than with Dr. Gemoules. His lenses aren't a trial lens but a perfectly made custom lens for your eyes. He can see scans with them on to make sure they fit perfectly and that there is plenty of vaulting. If there are any problems with the lens he made, he will work and work until they are perfect. You won’t leave his office without a perfectly made lens. His staff is extremely nice and helpful and I am glad to have met them and will be forever grateful.

    From the moment I put the lenses in, I feel relief. It is amazing what these can do to help patients that survived SJS/TENS and can help with others who suffer from dry eyes. It took 9 years for relief. I got TENS when I was 18 years old. I was barely out of high school. For the first time in 9 years, I can see clearly with no pain, discomfort and can finally wear normal sunglasses. It is very exciting for me that this is available to us who have suffered so much and I hope everyone who deals with dry eyes knows that there is hope and to not give up.

    Joseph
    Last edited by grandsporta; 09-Oct-2012, 16:23.

  • #2
    Joseph! I am very very happy that you have found some relief!!!! this is a great post. thanks for sharing your good news!
    Jenny

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    • #3
      Hello,
      Im glad that someone is helped with scleral lenses.

      Im having double vision problem problem arisen out of difference between both eyes power and also strabismus in my right eye.
      What problem caused u double vision?is there any special treatment u taken to solve it?
      Really need to be a ROCK to take the pain!

      Comment


      • #4
        Originally posted by hirentherock View Post
        Hello,
        Im glad that someone is helped with scleral lenses.

        Im having double vision problem problem arisen out of difference between both eyes power and also strabismus in my right eye.
        What problem caused u double vision?is there any special treatment u taken to solve it?
        My double vision is caused due to a scar going across my cornea from my eye lids scratching my eyes.

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        • #5
          ohkay
          i also have a scarred cornea...but still not sure what would help me to get rid of this diplopia.
          I will get boston lenses fitted next week in my working, less scarred cornea.
          Im gonna gt a new life with 20/25 vision...since mychildhood maximum i have seen is 20/50.That too not as sharp as scleral lenses would give.
          Really need to be a ROCK to take the pain!

          Comment


          • #6
            /////////////////////
            Last edited by hankm9; 30-Oct-2016, 00:11.

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            • #7
              Hiren, I don't know the answer but I have seen children with exactly this with us in the paediatric eye clinics. These double vision problems from completely different vision in the two eyes are treated in children's eye centres where children have had congenital defects and opaque corneas from birth or difficult cataracts from illness, and are either there for a best attempt at correction or after surgery. The only place I know in India is LV Prasad Institute but there must be others, but the best expertise for this might be in the paediatric eye specialists. I think as well as a good ophthalmologist it involves visits to specialist optometrists to work on corrective glasses. Your current surgeons need to be happy that their good work is respected and maintained if you consult docs about improving vision - very good luck for even more improvement x
              Paediatric ocular rosacea ~ primum non nocere

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              • #8
                this is interesting...seeing prokera for 1st time...
                Is this a one time treatment? or is it like boston lenses?
                If its a one time time reatment then how long shall the improvements last?
                Anyone here has done it? please refer me a link if so.
                Thank you all

                im going to Shankara nethralaya hospital, Chennai for boston lenses.I will consult the doc for prokera as wll.
                Really need to be a ROCK to take the pain!

                Comment


                • #9
                  /////////////////////
                  Last edited by hankm9; 30-Oct-2016, 00:11.

                  Comment


                  • #10
                    Well i already had a surgery for ammniotic membrane transplant in right eye(more damaged eye) in 2007.It did help a bit but not that much.
                    Then doctors never referred me for a repeat surgery.

                    I will ask them about prokera
                    Really need to be a ROCK to take the pain!

                    Comment


                    • #11
                      @littlemermaid.
                      The problem with me is combination of many things.So its hard to diagnose the degree of part each problem is playing for my ongoing diplopia.

                      One definite reason is "difference between power of both eyes".Only after cataract my double vision problem has worsened to an intolerable limit.And now, after cataract in my working eye, the double vision problem is coupled with a strabismus.My eyes look like this most of the time http://www.isec.my/images/img_strabismus01.jpg this image resembles exact position of my eye at present.(this is not me!)


                      This strabismus was not visible like this before i got cataracted in working eye.After the cataract this has occurred.

                      I will be fitted for sclerals next week, at the same time im advised to go for a capsulotamy in my right eye(which is squintted)
                      The capsule is already broken and is not capable of loading any iol anymore.And it has got whitened which may have an influence in my double vision.
                      Also after capsulotomy that eyes vision would increase by 25%.

                      But im worried if vision will increase in my squintted eye, it will make my overall vision poorer.Bcoz 2nd image which im seeing blurred will be more clear and will produce more confusion to the brain.

                      Oh god help me!
                      Really need to be a ROCK to take the pain!

                      Comment


                      • #12
                        Hiren, Don't you think the brain will adjust to the new vision?

                        What is your vision like in the cataracted eye now? Did the IOL make things better?
                        Paediatric ocular rosacea ~ primum non nocere

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                        • #13
                          Well my vision after cataract is much better...i m living much better life after cataract.But i have to keep reading glasses that i will have to adjust...as i got mono iol.
                          Now my vision in left(cataract eye) is 20/50.right eye vision is finger counting.
                          But the problem is my overall vision(with both eyes open my vision goes to 20/70 or 20/100!this is due to the diplopia im having.

                          Doctors also said my brain shall adjust to this and cut down the vision of right eye.But things are going worse.Im getting more n more bugged by this increasing diplopia.

                          With bsl in left eye, i can see upto 20/25.I will see how the right eye reacts when i will get my bsl next week.
                          Really need to be a ROCK to take the pain!

                          Comment


                          • #14
                            Good luck with this, Hiren, we are thinking of you. Do you think patching would help develop the eye and adjust what the brain is seeing? An orthoptist would assess what's happening and work with an optometrist to help adjust the glasses. With the children, they patch the good eye for a set time and use a regular eg Nintendo handheld electronic game or game on normal computer screen to develop the vision of the weaker eye. As you say, your reading glasses will be adjusted so this is another good question to investigate with these docs and find out what they can do. It's an ongoing process that takes time. What do you think? Wish you the best with this and BSL.
                            Paediatric ocular rosacea ~ primum non nocere

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                            • #15
                              I had considered patching treatment which is given for decease called amblyopia.
                              One of the retina specialist told me i have amblyopia in non working eye thats why vision has not developed.

                              But at chennai doctor said i dont have amblyopia.If i had amblyopia my brain would not have diplopia.Means my eye wouldnt send signals to the brain at all.
                              The vision loss is caused by absence of iol and scarred cornea, she said.And also added that the eye is has been already operated 2 times hence they would leave it untouched as much as possible.But i think for this diplopia i will either have to consider scleral fixation lense, so that the difference between both eyes power can be minimized.That might solve diplopia(might not too).If it doesnt solve then i may have to consider squint surgery also.
                              Chennai doctor is of the view that none of these surgery should be done in this weak eye.

                              So lets see how things go with bsl initially.It will be a long process to come out of this bugging diplopia.
                              Really need to be a ROCK to take the pain!

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