I was scheduled to go to craig and get surgery. They had looked at my mri, gave me a surgery date and all. Then they called and said they couldn't take my united healthcare insurance. I was devastated, it made my so upset. Ron
On Tuesday, January 24, 2017 2:59 PM, Lori Michaelson <lorilivin...@gmail.com> wrote: I meant to say at the end of my recent post that 'Again, posttraumatic syringomyelia or aggravated syrinx makes quadriplegia a walk in the park.' On Tue, Jan 24, 2017 at 12:47 PM, Lori Michaelson <lorilivin...@gmail.com> wrote: That is exactly how I found out that I had a syrinx (posttraumatic syringomyelia) - I had never heard about it before 1994 and after 4 1/2 years of weird symptoms (nothing with my back - pain or anything) and then after my pupil dilated... I said to myself "That's it... something is WRONG." So I got right on the phone with Craig hospital in 1994 and a neurosurgeon called me back with my inquiry telling me to have an MRI done because it sounded like I had Syringomyelia." All I knew was that I had never heard of it before and therefore I was scared to death. I didn't have the resources back then to travel all the way to Denver from the Northeast so I had the MRI done by my physiatrist (who confirmed the neurosurgeon's guess at Craig Hospital at what I had). Therefore I got 3 different opinions in 3 entirely different areas in New York state and chose one. In one way it it doesn't seem nearly 23 years ago with my diagnosis but I did not get operated on until 1995. That took care of my original symptoms but then, 2 years later, pain started slowly sliding in from my lower neck all the way down my spine and around my right shoulder blade (where my syringo pleural shunt is). My follow-up MRIs showed for several years that the shunt was still draining despite the pain has getting worse. I had one primary care physician make a pretty good educated guess as to why the pain slowly began spreading and that was because he said that the shunt was probably woven through quite a bit of nerve and muscle which makes sense. My pain under my right shoulder blade and the entire area covers ALOT of muscle and nerve. The guests at the muscle is right because if I overuse my right arm... my pain gets much worse. In fact, I used to use my fist or the eraser end of a pencil to type for many years and avoided going to use voice recognition software but after I did... I never went back. I began to use Dragon around 2003. Now the pain is tolerable as long as I don't get moved wrong or as long as a caregiver does not accidentally press into that area. For some reason, it just hurts for days or weeks or longer when a caregiver accidentally moves me wrong or presses into that area too hard. My worst experience was in the middle of December 2016 (last month) when I was getting moved up in bed and felt my pain area being pressed into quiet hard even though I was not doing anything different and it has not only triggered pain but spasms. Again, posttraumatic syringomyelia or an aggravated syrinx makes syringomyelia a walk in the park. On Mon, Jan 23, 2017 at 10:50 PM, Robert Vogel <rhvsh...@me.com> wrote: Hi Bobbie and all, There has already been much excellent information shard about about Syringomelia (Syrinx) on this site including (I forgot the person that mentioned Dr. Scott Falci Craig hospital (as well as Dr. Barth Green at the Miami Project) as being the top peoplein the field in terms of Syrinx and SCI. Dr. Falci and Charolette (sp?)at Craig Neurosurgery are very good at answering questions and providing information about Syrinx, based on symptoms etc. over the phone—Dr. Falci has performed well over 1000 Syrinx surgeries and helps you figure out, via phone based on symptoms, statistics, and his experience (he has operated on well over people with Syrinx’s) when one needs treatment (surgery) vs. when to leave it alone. Here is a link to an article I wrote for New Mobility magazine about SCI and Syrinx, hope the information is helpful.http://www.newmobility.com/201 1/01/paramedic-syrinx-and-pain / Bob Vogel On Jan 23, 2017, at 6:26 PM, Bobbie Humphreys <bobbiehumphre...@gmail.com> wrote: It is well over 50% of spinal cord injury who develop a syrinx, some with in a month of injury some many years and then others ... never.Bobbie "You must fail in order to succeed" On Jan 22, 2017, at 8:02 PM, Lori Michaelson <lorilivin...@gmail.com> wrote: Yes, I have known for years that 3 to 4% of persons with traumatic spinal cord injuries get posttraumatic syndrome syringomyelia and I fell into that 3% with severe symptoms whereby I had to quit work. Those "others" are able-bodied people who developed a form of syringomyelia called Chiari Malformation. Even though vastly different they have the same type of "syrinx." It is similar in that a Chiari Malformation it is an abnormal collection of CSF [cerebral spinal fluid] in the spinal cord (syrinx) and is also confirmed by cine MRI and causes severe or worsening symptoms. ~Lori On Fri, Jan 20, 2017 at 10:45 PM, Aaron Mann <aman...@gmail.com> wrote: More info: "Approximately 3-4% of persons with traumatic SCI develop clinically symptomatic PTS. A larger percentage of persons have clinically silent syrinx cavities diagnosed by imaging techniques." http://emedicine.medscape.com/ article/322348-overview -- "Petting, scratching and cuddling a dog could be soothing to the mind and heart and deep meditation and almost as good for the soul as prayer." ~Dean Koontz -- "Petting, scratching and cuddling a dog could be soothing to the mind and heart and deep meditation and almost as good for the soul as prayer." ~Dean Koontz -- "Petting, scratching and cuddling a dog could be soothing to the mind and heart and deep meditation and almost as good for the soul as prayer." ~Dean Koontz