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  • Anonymous
      Post count: 93172

      Dear Gryneyedladi,
      It makes me vwry sad and concerned to learn of your situation. I wonder if a University Hospital or Clinic in Florida would be able to help you. I don’t know Florda, so I’m not sure if there is a medical college near your home. I receive care at the Eye Institute here in Milwaukee, Wisconsin, which is affiliated with the Medical College of Wisconsin. I wonder if a medical social worker could be of some help in getting T19 coverage for you. Your need for the decompression surgery is serious and I pray that you’ll be able to find some funding for this procedure. Perhaps others on this web site will have other suggestions. I feel like I’ll either be having the decompression surgery and/or a thyroidectomy in the next few months. My new endo MD was planning to present my case to a board of about 25 endo MDs to get other opinions re surgical options. Has your eye MD written a statemtn indicating that you’re in desperate need of the surgery to prevent further vision loss? If not, a letter such as this might be helpful. I will pray that you get the help you need so you’ll be able to have the eye surgery. I believe you once mentioned that you had a thyroidectomy in the past. Could I ask how long ago that was and did it help your eye condition at least temporarily? Please keep me informed on how you’re doing. I wish there was some way I could help you, other that keeping you in my prayers. Nina

      Anonymous
        Post count: 93172

        Have you tried Bascolm Palmer Eye Institute in Miami?

        I have had all 16 of my eye surgeries there including a three wall decompression on both eyes.

        I have sent folks to them before with no insurance and they worked with them.

        Give them a try.

        Jake
        On-line Facilitator

        Anonymous
          Post count: 93172

          Hi All and Happy Labor Day. Here is my problem, I live in Charlotte County Florida and I’m in need of Orbital Decompresson Surgery on both my eyes. I have no income and no insurance. I’ve been denied by Social Security and Medicaid twice. I tried to get help from my doctors hospital but they turned me down due to the fact I don’t live in their county. Does anyone know of any types of clinics or hospitals in the State of Florida that offers free help. I am desperate and truly need your help. Thank you all and God Bless

          Anonymous
            Post count: 93172

            Dear Jake,

            I did contact Balsam Palmer and was turned downed since I don’t live in their county. I have tried every place I could think of such as Mayo Clinic and Cleveland Clinic. I’ve called University Schools of Medicine. It all comes back to where you live. I’ve been told by Medicaid, Cleveland Clinic to move out of state where you don’t have to have Social Security to get Medicaid.

            Dear Nina,

            Hearing from you always brightens my days. I had my thyroidectomy in June and for me it didn’t help. But I’m sure it’s helped others. I’ve already written to everyone possible but I think I’ll write the Govenor again and tell him my woes. I just can’t do anymore, I’m giving up hope.

            Thank you both for repling and being here for me.

            Diane

            Anonymous
              Post count: 93172

              Diane,

              Don’t give up on the Social Security disability. Getting approval is a matter of getting your doctors to document the disability properly. I’d like to talk to you on the phone about this, as I have considerable experience with this and might be able to help you. Send me an email with your phone number and a good time to call if you’re interested in talking futher. I hope I can be of help. (I am on SS Disability for TED, along with other issues.)

              Dianne W
              Online Facilitator

              Anonymous
                Post count: 93172

                Hi Diane,
                I just want you to know that Jake and I drove 4 hours one way to Bascom Palmer to get help with his eyes. Sometimes we would have to drove down and back for several days in a row. What I cannot understand is why they tell you that they can’t treat you because you aren’t from Dade county?
                Jake has referred MANY patients to the eye institute with no problems.
                People fly in from all over the world to be seen and operated on.
                I suggest you call again and make an appointment.
                Keep us informed on how things go.

                My Best,
                Jan
                Online Facilitator, NGDF

                Anonymous
                  Post count: 93172

                  Hi Jan,

                  After reading your post and Jake’s, I just can’t believe they treated me so poorly when I called them. They told me I had to call and make an appointment and ask them first how much it was going to cost me (since I’ll be paying for that). Then when I get there I’ll have to fill out the usual paperwork asking for my insurance information. Then they would immediately send me to the financial department. Where she believes the best they will offer is half the bill since I don’t live in their county. She told me that there are Stste Hospitals in EVERY County in Florida. I stopped her and said that’s not true. Charlotte County (where I live) has 3 hospitals and all of them are privately owned. If you could please help me get through this and tell me what I should do with them. I was going to write to our Govenor one more time and explain what has been happening since I wrote him a year ago asking for help. I’m going to state that if I continue to get NO help that I will be forced to contact the media and see what they can do. Thank you again for yours and Jakes support. It does help to know that people care about my conditions.

                  Diane

                  Anonymous
                    Post count: 93172

                    Send me an email I will see what I can do. I have sent a number of people there over the years and they have all been seen. Many of them without insurance. They did have to pay some but they did work a a payment plan that was practical.

                    jake@ngdf.org

                    Anonymous
                      Post count: 93172

                      Dear Gryneyedladi and fellow TED Patients,
                      Happy Labor Day to all and another “thank you” for all the information and emotional support you have given me since I joined your wonderful organization in the Fall of 2006. I feel like “the steroid queen” since I’ve been on massive doses of both IV and oral steroids since this past May. Right now, I’m starting a 2 week regime of 25 mg of Prednisone q day, and then will taper to 20. My eyes seem to be stable at this time, but I’m fearful as to what will happen when I’m down to 5 mg q day. My last TSH was 10.45 — quite a change from the 0.51 in July. The endo MD can’t explain the change, other than to say that “steroids do strange things”. My Tapazole has been reduced from 20 to 10 mg q day, and, since that time, I do feel better. I know I might be faced with both decompression surgery and possibly a thyroidectomy in the next few months, and am fearful of both procedures. I know I’m not alone with my fears. Thanks again for being there.
                      For Gryneyedladi —- I’m praying that you get the financial help you need to have your eye surgery. Nina

                      Anonymous
                        Post count: 93172

                        Hey Nina,

                        This is just for you. Grey skies are going to clear up, but on a happy face. Or how about…Just what makes that little old ant, think he can move that ruber tree plant, everyone knows an ant can’t move a rubber tree plant. He’s got Highhhhhhh Hopes. You see my friend I’m trying to cheer up you, me and everyone else having a blue day. Hope you Labor Day was filled with laughter and happiness.

                        Diane

                        Anonymous
                          Post count: 93172

                          Hello to all this beautiful fall like morning.

                          When the things in life don’t seem to go your way
                          and you’ll feeling sad and blue a song to sing a prayer
                          to pray will brighten up your dreary day and let the love
                          of God shine through.

                          Chorus: when you have a little song to sing your day will be
                          brighter if you have a little prayer to pray your load will be
                          lighter while traveling down life’s road Jesus will help you
                          bear the load if you have a song to sing and a prayer to pray.

                          Don’t let fears and doubt and satan over take you just remember
                          God loves you He’s always there to hear your prayers your burdens
                          he will gladly bear he’ll walk with you the whole day through.

                          repeat Chorus: And Have a Smile kind of day Louisa

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