I just noticed your last statement of your letter asking for some confidence and support. Please do not take my letter wrong. I want to encourage you that help IS available.....but I also want to encourage you to make sure that you are taking steps that have a chance at achieving success. I also forgot to mention that if you wanted to read my story on the quilt it is Karla N's story. For a while there were two Karla's on the list. I have not seen Karla B in a while. I wonder how she is doing.
-- Karla N.
> ----- Original Message ----- From: Karla To: Multiple recipients of list ADHESIONS Sent: Friday, September 15, 2000 5:41 PM Subject: Re: HELP ME PLEASE
As far as your disability goes.....put yourself through a job interview. Ask yourself questions that an employer would ask you. Write your reasons for not being able to do things down. Be very specific. Don't just say you have severe pain. Explain your pain. Put it down that you must lie in a reclining position. How do adhesions affect your life. Do you take narcotics for pain? Write this all down. If you are on narcotics you really cannot even drive to work. I don't know what type of job you have....you have to analyze the work that you did and why you cannot continue to do it. Write everything down. Then sit down and put it all together. Bring it to your physician and give it to him. Have him write a letter using what you have told him, telling the people at your state agency (for disability) that you cannot work and then have him go into the reasons why. Once he writes it and gives it to you, if it isn't good enough....have him do it again. It has to be very specific. If you are suffering from depression let him say that. We all are suffering from depression and if that is what it takes to get disability...oh well. I worked with a friend who actually wrote a letter for her doctor. She brought it in and he signed it right then and there. They did, of course copy it onto letterhead, but they didn't even bother retyping it.
I used to work for Social Security and reviewed claims. I have also applied for disability two times...successfully. However, it was Bev that filled me in on the letter from the doctor. She had sat in on a meeting with an attorney (he had been my attorney the first time I applied, but this was not when she was involved) and he educated her on how to apply for disability. The other suggestion I have is..... go to your library. There you should be able to find books on how to get disability. I don't know the titles, but I do know they exist. I know of people that have used them....each one successful. Too often people will tell the adjudicators they can't work because they have severe pain. That is very subjective and you need to let them know just what you mean by severe. If you have any questions let me know.
As far as your surgeries....don't allow yourself to get into that cycle. It may turn into something that you can't get out of.....like me (read my story on the quilt if you haven't already) and as you already know surgeries are your worst enemy given that they only make your adhesions worse. You need to think about visiting a qualified adhesion specialist. This may cost you some money, but isn't your life worth it? Many people will take out loans for a new car, or a new house, but would never consider it for their life. Dr. Redan and Dr. Reich have recently opened the adhesion center in Scranton, Pa and they are the only surgeons that I would consider going to. They use a technique that is very time consuming and meticulous. I do not really know of anyone that was disatisfied after they went there. Basically noone has gone and come back still in pain....or had their pain return at a later date as might be the case in the reformation of adhesions. Some others are going to Germany, where Dr. Korell uses intergel when he goes in. He also does a second look procedure a little more than a week later...where he goes in and looks for reformed adhesions. As expensive as this may sound, it can actually be cheaper to go to Germany than to go to Scranton...depending on what your insurance pays. The trip to Germany costs approximately $6,000 including your airfare, hospital costs, Dr. Korell's fees and the cost of your room for the additional time that you are there. (You would be hospitalized for 5 days, but be there about two weeks or more)
There is help available. Don't sell yourself short and submit to surgeries with doctors that only think that they know what they are doing. Educate yourself about this disease and before you allow them to cut you open again ask them about the technique that they use.
> ----- Original Message ----- From: dstevens To: Multiple recipients of list ADHESIONS Sent: Friday, September 15, 2000 10:43 AM Subject: HELP ME PLEASE
HI! My name is Debbie and I have the same concerns as many of you do! First how does one know when to actually go through another surgerical procedure and with whom? I had adhesions removed in 1988 and was painfree until 1998! At that time I had a Labroscopy that removed major sheaths of adhesions (pictures shown had no view of any organs as the adhesions were so thick!). Then 2 months later I had a hernia operation, the doctor used the Sepramesh to patch it. I had some relief for a couple of weeks, not painfree-just relief, then I had increased pain! Eventually I had a laproscopy which I had my right ovary removed and more adhesions removed!! I was put on Lupron therapy as there were signs of Endometriosis. I was told I could be on Lupron for only 6 months when it was terminated the pain became excrutiating again. Then this past Nov I had a hysterectomy done, which should have killed the pain as I was told that my left ovary was completely imbedded in my pelvic bone!! The doctor did use Interceed to help stop future adhesions! But unfortunately I had no relief!! Now I have been without a job for almost a year as the pain has held me from being able to do much activity, be it sitting, standing, or walking, the only position that I have relief is in a lounging position with my legs up!! Now my question: Will I ever be able to rid of this problem and get back to a normal life?? My pain specialist is considering placing a SynchroMed Infusion System in my body! The problem I see with this is the knowledge that I'll be returning for miny surgeries every couple of years to replce the product when the battery dies!! Currently I am fighting to get disability and have been worned that it will be a hard fight. They give me an attitude with the assessment as we know the old school says adhesions don't cause pain!!!! If one goes through another operation, which can cause more adhesions, how can it be diagnosed that it's adhesions causing the pain unless they go operate again to see if that is causing the pain??? As I see it, I'm getting into a cycle of operations to see if I still have adhesions and if whatever barrier is useed actually worked!! PLease help give some confidence or support that if I do have another operation the pain will subside!! Thanks Deb