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Recent Accident to My Son

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  • Brian completed the Keirstead Lab Report on Friday night. Jennifer posted the report on: Carecure/Cure Forum /A visit to Dr. Keirstead's Lab/.

    The report is attached to message #100 on sheet 10.

    As I said in a previous message Dr. Keirstead impressed me very much. He's very down to earth and compassionate. I wish that the cure for chronic spinal cord injury was closer, Dr. Keirstead has a plan but it is going to require a lot of work and money. My goal is to get better at raising money to support Dr. Keirstead and Dr. Davies. Asking people to contribute money is not something that comes easily to me.

    Roger

    Comment


    • My goal is to get better at raising money to support Dr. Keirstead and Dr. Davies. Asking people to contribute money is not something that comes easily to me.
      Roger~ It never came easily to me either but at year 15 I said, "What the hell do I have to loose?" In the last two years I have raised over $30,000 personally and recruited others who have exceeded $100,000.

      I have found that if I speak from the heart, share why it is important to me and show a direct impact, I am successful.

      Good luck.

      Brian, Marcia says hello.
      Every day I wake up is a good one

      Comment


      • Roger, I just got on CC again for the first time in a long time. I am so glad that Brian is doing so much. Good luck with getting the equipment that you need. My brother bought my husband his standing frame and it's the one that glides. My brothers in-laws live in Phoenix and they are there visiting right now. I can't to read Brian's report. Take care!
        Tonya

        Husband, Ron, is a T-7 complete as of Oct. 06

        Comment


        • I was treated at Craig. I have since then talked to people all over the country and have come to believe what I thought was the case. CRAIG ROCKS! As the SCI nurse stated, There is so much more to rehab than just PT. Craig will give him the whole package, and he will always have access to them for follow-up or just about any question or situation that comes up.
          Dave E. C6-7 Incomp. Quad 9-06

          "NEVER LOSE SIGHT OF YOUR DREAMS!"
          "THERE IS NOTHING BETTER FOR THE INSIDE OF A MAN / WOMAN THAN THE OUTSIDE OF A HORSE"

          Comment


          • Today, I called Restorative Therapies and ordered the RT-300 bike. I have no excuse for why I've been waiting to order the RT-300. Brian has been going to St. Joseph's three times a week and using a RT-300 bike at St. Josephs rehab. Blue Shield of California sent a denial letter to us in the middle of October. Restorative Therapies has submitted an appeal to Blue Shield but we won't have a determination on that until February. I have the letter of medical necessity written by Dr. Sadowsky at Kennedy Krieger. This letter was submitted by Restorative Therapies when they were requesting pre-approval for this piece of durable medical equipment. In the letter there's a paragraph titled:

            NOT EXPERIMENTAL OR INVESTIGATIONAL
            The RT-300-S system has been cleared by the FDA for marketing. The listing number is E239018 and the 510(k) number is K050036. Thus from a regulatory point of view this device and treatment is neither experimental nor investigational.

            The letter of medical necessity details all of the benefits and the reasons why it's necessary. It's a well written detailed letter with two pages of technical references. I doubt that the doctor who signed the Blue Shield denial letter even looked at the letter of medical necessity. He said that the request was denied because:

            The clinical rationale is that there is no scientific evidence that this cycle has long term benefits. It is considered investigational and not in accord with Blue Shield of California Medical Policy.

            Obviously, the Blue Shield denial form letter is intended to discourage you from pursuing the claim. They don't respond directly to the letter of medical necessity they just act like they've never read it. Anyway we're getting the bike and I will pursue the appeal. I'm going to attempt to get another letter from the St. Joseph's rehab PT or director.

            Last June our case worker from The Shepherd Center wrote a GREAT letter to Blue Shield that resulted in the transportation expense from Phoenix to Atlanta being appoved. I wish I had a copy of that letter to show to the St. Joseph's rehab PT.

            Roger

            Comment


            • Always ask, when filling an appeal, to have the letter reviewed by a physiatrist who specializes in SCI, not just any physician. You have the right to request this, and it can make a big difference in getting things like this approved or not.

              (KLD)
              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

              Comment


              • Thanks for the suggestion KLD. I'll call Restorative Therapies on Monday to make sure that your suggestion is part of the appeal that they're filing. Then I'll send Blue Shield a letter to make sure.

                It's really annoying that Blue Shield totally disregards documented facts that are presented to them that justifies a piece of durable medical equipment. They respond with a form letter signed by a Doctor that disregards everything that has been presented to them in writing with supporting clinical studies. The letter of Medical Necessity had 18 references to published papers documenting the benefits of the functional electrical simulation and exercise.

                Blue Shield will deny claims because there's no supporting data but they don't feel obligated to respond with facts or published papers to justify their postion. The denial letter I received from Blue Shield said:

                You may obtain a free of charge copy of the actual benefit provision, guideline, protocol or other similar criterion on which the denial decision was based, upon request, by calling the customer/member service phone number listed at the top of this letter.

                I called Blue Shield and requested this information. The customer service representative didn't have a clue what I was requesting. I'm calling Blue Shield again Monday morning.

                Roger
                Last edited by Roger; 01-05-2008, 01:57 AM.

                Comment


                • Last June our case worker from The Shepherd Center wrote a GREAT letter to Blue Shield that resulted in the transportation expense from Phoenix to Atlanta being appoved. I wish I had a copy of that letter to show to the St. Joseph's rehab PT.

                  Roger
                  Roger, I have found that the folks at KKI write excellent letters of appeal and are generally successful. Your next step would be a doctor to doctor appeal via telephone. You can be conferenced in on the call as well.

                  I would call Shepherd and ask if they have a copy of the appeal letter they sent on Brian's behalf. You had shared it with me but I have long since deleted it, wish I could help.

                  I think Brian will be happy having his own RT-300 at home. It will save travel time etc and can be done at his convenience.
                  Every day I wake up is a good one

                  Comment


                  • Cheesecake

                    Should I contact KKI and ask for an appeal letter from them? I've been letting Restorative Therapies handle the appeal to Blue Shield so far but they have not sent me copies of what they've submitted to Blue Shield. We have a Letter of Medical Necessity from Dr. Sadowski which is very good but ignored by Blue Shield.

                    Our contact person at KKI is a lady named June. My wife is looking for June's telephone number but her record keeping is usually done on scraps of paper, instead of a spiral ring notebook. I'll let you conclude who keeps all of this information organized in a spiral ring notebook. Possibly you know June, if so can you PM to me June's contact information at KKI?

                    I just noticed that I'm logged on Carecure using Brian's user ID. I'm using his laptop and it automaticly logs in for him.

                    Roger

                    Comment


                    • Roger~
                      Whenever I have filed an appeal (my insurance sucks) I have always asked for a copy of all letters and documentation. Generally the doctor works cooperatively with the vendor. I would ask Judy or Andrew at RT for copies of everything they have submitted, the dates and any follow up. I keep folders per issue.

                      Believe it or not, my insurance denied a blood pressure cuff for AD as experiemental.

                      I will send you a PM with June's info. Do you have a fax number? If so send it by PM. I have a KKI Contact sheet with all the numbers that I can fax to you. No more scraps of paper.
                      Every day I wake up is a good one

                      Comment


                      • Shriner's SCI hospital in Philly

                        It is free for kids ages 21 or lower
                        Jake's Pop

                        Comment


                        • giambjj, not sure why you posted that here. This is a old thread. The young man in question has long ago completed his rehab.

                          (KLD)
                          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                          Comment


                          • Restorative Therapies notified Brian today that the RT-300 will be delivered on next Tuesday and a therapist from Craig will be at our home on Friday to setup the RT-300.

                            Brian has signed up to take an on-line course in immunology from UC Berkeley. He needs one additional science course for the medical school prerequisites. He has also made arrangements with his one of his doctors to work in the doctor's office to gain clinical experience.

                            Last month when we were in Irvine California Brian met with the UC Irvine Medical School director of admissions. She told Brian that his college grades and his MCAT scores were very good but he needs clinical and research experience. His undergraduate degree is from UC Berkeley in business and pre-med. July 2008 is when Brian will submit his medical school application so he has until then to get the needed experience. If he is accepted, classes would start in Sept 2009. I never knew that the medical school application process took so long. After Brian gets clinical experience and as he becomes more independent he will try to make contact with a research lab to complete the requirement for research experience. I'm hopeful that he might be able to spend sometime at Dr. Keirstead's lab at UC Irvine, this would be the perfect situation. If you read the lab report that Brian wrote after his visit to Dr. Keirstead's lab you'll see the kind of work that he's capable of doing. If anyone has any contacts at a research lab that would help Brian complete this requirement for his application please let us know.

                            Roger

                            Comment


                            • The RT-300 came today. It's still in the box. Friday a therapist from Craig is suppose to come and set it up.

                              Tomorrow, Brian is attending a seminar at St. Josephs presented by Dr. Theodore. Dr. Theodore was the neurosurgeon at Barrow Neurological Institute who operated on Brian. He's a wonderful man. Before the surgery Dr. Theodore told me that he would care for Brian as if Brian was his own son. At the time these words were exactly what I needed to hear. I really appreciated Dr. Theodore's kind words.

                              Roger

                              Comment


                              • The RT-300 was setup by a therapist from Craig on Friday. Everything was working when she left. On Sunday we moved the bike into the family room to use it and had a problem, it froze up part way through the session. Monday night we used it again in the family room and one again it froze. I'm going to call Restorative Therapies tomorrow morning. I suspect that the problem is related to losing the WiFi Internet connection. Brian uses his laptop in the family room and kitchen without a problem and it also has a WiFi connection to the Internet. The RT300 has a HP pocket size computer that's the controller / stimulator.

                                Roger

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