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 <[email protected]> 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 <[email protected]> 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 people >> in 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/2011/01/paramedic-syrinx-and-pain/ >> >> Bob Vogel >> >> On Jan 23, 2017, at 6:26 PM, Bobbie Humphreys <[email protected]> >> 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 <[email protected]> >> 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 <[email protected]> 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
