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Hi Everyone, We are back from New York and still at a place of being overwhelmed by the results. We must say that if you ever go to NYC... Kathleen and Peter Cochren are wonderful beyond belief. Kathy came and went to dinner with us the second day we were there. She is so much fun. Then on Saturday both Kathy and Peter (her husband) drove us all around NYC and took us to dinner in the Italian district.... yummy to say the least. We had taken tons of pics but the camera got demagnetized and deleted everything. Memories of mind is all we have but that is more than enough. Both Robert and I want to extend our deepest thanks for such wonderful company while there. Hey Kathy, we kept our word and wore the T-Shirts from the unity walk for 2 days.... we took lots of pics including several with the doc's at Long Island Jewish Medical Center. We would have posted them but..... Just wanted to say thank you thank you thank you.... and Rayilyn.... our thanks to you for the beautiful flowers that you send along with Kathy and Peter. We also need to thank Joan H. and Edith L. for their continued support throughout this misadventure called our life. Mondays, FDG PET scan showed NO PD+ syndrome. It did however show that my midbrain is so far distended into the neck area that it produced no signal from the isotopes that were injected into me. (This would correlate with the Type I Chiari Malformation diagnosis.) I also had a sleep study done here in Charlotte for the past 24 hours. (Talk about a distressing experience.... no internet access! I was planning to write everyone to tell everyone what went on while there but NO.... whaaa... internet.) The sleep study went well. Blood O2 levels did not drop below 92 all night. This is a far cry from the 40's that was read last November when they started me on oxygen at night. Keep your fingers crossed and your prayers going because we won't have the results of the Apnea or EEG until Thursday next week. We got an email about someone who has a cyst on the spine that was told it was Chiari... I want to explain what this is...While some people can have this, it is separate and different from a type I Chiari malformation which is a herniation of the cerebellar tonsils. The cyst is called a syrinx and can be any place on the spine and causes a blockage in cerebral spinal fluid flow. It is not the same as Chiari thought a person with a syrinx can have Chiari to boot. What I have is the actual sinking of the Midbrain into my neck area. The Cerebellar tonsils have cut off CSF to the brain at the brain stem, causing ALL of the symptoms that I have been having which resemble MSA. The doctor's at the medical center, after watching me on Friday and then on Monday said "based on clinical observation alone....they too would have dx me with MSA." It was only the PET scan that separated me from this dx which I have lived with for over 3 years. That last statement alone made us shake in our footsteps. Had we just "treated the symptoms" I would have died. The sad thing is that when we talked to Dr. Levesque this afternoon, he said, "Unfortunately, the damage has already been done." What he went on to say that I need to have the brain surgery ASAP to put a graft on the cerebellum and lift it back into the skull and to have a shunt put on the brain stem so that CSF can be restored. The atrophy of the brain stem was caused by the cerebellar tonsils suffocating (so to speak) it. The operation can "prevent further damage" from occurring but offers no promise of recovery from the state that I am now in. While we are overjoyed with the news that this is not MSA... there still is a long road ahead of us. Chiari is thought to be genetic and is often misdiagnosed as MS, PD, Fibormylegia, MSA, and other rare brain disorders. It is very important if you have someone in the family with these symptoms to have other family members tested. It most often starts to rear its ugly head between 35 - 45 years of age. The symptoms are the same as the alphabet soup disorders and as we can now prove, without the 2 PET scans and the CT-SPINE MRI with CSF Flow study.... grave consequences and the inability to be healed can occur. I know that money is a terrible constraint for almost all of us with these neurological disorders and I know that not all insurance companies will pay for exotic tests like I had but I also know that the place we went in NY never asked us about how we were going to pay. They had me sign a document stating that they could use the results for their research. We have CIGNA insurance and a case manager that works with and for us. CIGNA's policy states that PET is covered... it doesn't say what kind of PET specifically... there are 16 different types of isotopes that can be used. Because of this...even the "experimental" isotopes are covered. PET imaging has been available for the public for PD and PD+ disorders at this facility for 15 years!!! I have know about it for 18 months and have asked every doctor that I have seen for the past 17 months for the test only to be told over and over and over again that it was not necessary because "their" opinion on clinical observation, time, lack of response to meds, symptoms and progression that I indeed had MSA and the test was not warranted! Excuse me... B.S!!! Had we not pushed forward, we would be treating the symptoms and I would in fact die. Now there is a new path to take. No promises, but still a new path. I do still share with all on the list the same symptoms and the same treatment of those symptoms but it looks like another brain surgery is in my very near future. I have been through a lot... including the DBS. I pray that my experience will help those who feel all hope is lost to know that maybe, just maybe, prayers can be answered and it might indeed be something other than what only "autopsy" will discover. Please, don't wait until death to discover that you or your love one had something that could have been worked with. I'm so glad that Robert didn't give up on me and finding the answer even after I had given up on myself and had accepted death as my only option. Hugs, Warm Fuzzies, and Deepest gratitude for the support you folks have given us, Deborah aka Tenacity P.S. Tomorrow I will post the pic of both PET scans to my photo site for you to view. http://community.webshots.com/user/tenacitywins But for the grace of God, Go I! _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn