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Diane's Chiari Surgery

Organized by: heather lewis

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for more information on Chiari Malformation
September 03, 2016


From Diane: I was first diagnosed with Chiari Malformation in August 2012. I knew nothing about it. Other than i was told i needed brain surgery. I was scared and did little research. I was in search of finding a Neurosergeon who could do my surgery ASAP because I was at the point of loosing my feeling in my legs and feet and i was having black outs alone with a bunch of other symptoms. I found a NS at UNC Chapel Hill and had my surgery the next month. I was in the hospital for 4 days. Out of those 4 days, the doctor came and checked on me 1 time and I never had any follow up care with him. Only 1 follow up care with his NP. After just a few weeks from having my surgery, i felt i was getting worse. I would schedule an appointment and the office cancel it. I went to the ER and pretty much was given pain medication through IV and send me home. This went on for several months. Then i got better, but my symptoms returned. For the past 4 years, I have been in and out of the emerency rooms, I have had numerous CT scans and MRI's and saw a NS last August and he went over my scans and said everything was ok from the previous surgery. Then in November I started having the worst pain in the back of my head and went to Baptist. They did a CT scan and said everything was normal and I was stressed out. My pain only got worse the next few weeks in the back of my head where I had my surgery at. I knew it wasn't from stress. The pain got so bad, I had to be taken out of work for a month. I finally got better and was able to go back to work. Then this past July the pain in the back of my head alone with all my symptoms that I had from my previous surgery has came back and is worse. I have had a recent MRI by a doctor in Hendersonville, NC and he was able to see why I am not better. My first surgery has failed and pretty much it is because of the lack of knowledge the doctor at UNC has. The doctor at UNC never checked me for any of the co-morbid conditions Chiari Malformation patients can get. Since I have seen this doctor in Hendersonville, I finally found out I have POTS and MSAD. There is no cure for our condition. I am needing another surgery to correct the previous surgeons surgery. If I don't do surgery, my symptoms will get worse and could possibly leave me paralyzed. Unfortunately there is only 1 true chiari specialist in NC. There are many NS that are able to perform the same surgery I had before, but I would not trust but only 1 doctor with a knife in the back of my head. This doctor is not in network with my insurance. I have worked with Cigna these past few days, but my insurance company is being very difficult with me. There is another chiari specialist that is in network, however he is located in New York, and traveling out of NC at this time is not an option. I have my appointment with Dr. Rosner on September 22. We will go over details on how is will correct my previous surgery and hopefully then I will find out my surgery date. But before I can book my surgery, I have to pay $5000 up front. I am already in debt with medical bills from the previous 4 years from dealing with crappy doctors and health care. Now that I am able to finally get in with one of the best surgeons in NC and he has fixed a lot of patients and they are very happy with his service I am asking if you would please help me reach my goal so where I am able to have this surgery soon.


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heather lewis

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