Welcome,
This is the very first time I have ever created a blog spot before, so please be patient with me as I learn:-) I'm sure you will see how this site will grow and become more interactive and interesting. By the way, does anyone have a magic wand to wave to give me a few more weeks before the year is over?
I came back from New York with a long list of medical equipment I needed to get, and so far I've almost gotten everything. I'm learning so much about selling medical equipment, that if my health were a little better, I'd sure consider doing it:-)
The Aspen Cervical Collar: Purchasing the Aspen Cervical Collar has thus far been the easiest. It took 4 phone calls until I was able to find a Medical Rep, and one willing to come to my home. I'm using it now a few hours each day. I'm to wear it around the house, and when I am a passenger in a car. I cannot use it as a driver until I get additional mirrors on my car to see blind spots.
CPAP: I was also successful last week in getting my CPAP machine, but have not yet started using it yet. I will ease into that I'm sure. Hopefully, by sleeping better at night, it will improve my oxygen levels as well, and help me to feel less tired during the day. Because the brain fluid is backed up in my brain right now, I'm having compression on parts of my anatomy in my brainstem that is causing me throat obstruction when I sleep, and choking and coughing when awake.
Currently I stop breathing 21 times an hour at night (which is considered modest sleep apnea), but what happens that causes me the most sleep distruption is that I wake up during REM sleep. My eyes are wide open, I'm choking and cannot get air, and my body is paralyzed (I cannot move at all). During REM, the body releases a substance to tell the muscles to basically rest. When that happens, the next day I'm a zombie. I'm pretty much like sleeping beauty right now, maybe not the beautiful part (LOL), but definenitely the sleeping part!
Pronex Neck Traction: On Friday I will meet with a Medical Rep, and test out the Pronex Neck Traction machine. Why so much traction you ask? Well, the theory is that maybe if we can lift my skull, it will open up just enough that it will improve the flow of CSF. If that happens, then my Chiari symptoms may improve. Unfortunately, the Pronex is made partly out of latex (which I have a sensitivity to) so I wont be able to use it, but I have found a wonderful substitute, The Saunder's Home Cervical Traction Device. It's what most PT offices use here in MN. I like it because it has a gauge so you can see how much weight you are using for traction. While I realize that all these medical devices are a temporary fix for a more serious problem, I welcome anything that will improve my quality of life right now. And for many, traction can work for a long time.
To learn more about these medical devices see the links on the side column.
Come back later, I hope to have more bells and whistles on my blog by the weeks end. Maybe photography, poems, quotes, U-Tube links, etc. Stay warm and stay safe, enjoy a hot cup of tea or hot chocolate and watch a Christmas Movie for holiday cheer. I watched Elf last night for the 100th time, makes me laugh for sure!
Connie
Tuesday, December 16, 2008
Monday, December 15, 2008
A Visit to The Chiari Institute
December 8, 2008
Greetings family, friends, and all who reach this blogspot.
I have just returned from a two-day intensive medical appointment with Neurologists and Neurosurgeons at The Chiari Insitute in Great Neck New York. We flew into LaGuardia, a small airport that was only a 20 minute drive to The Variety House, a two-story brownstone for families and patients. It was nice to visit with others with similar medical histories (believe it or not). Some were even worse, so it made me grateful for the health I do have.
On the second day I underwent 3 hours of Imaging from the top of my skull to the bottom on my spine! The Imaging Technician looked just like my nephew Nathan, so between that and the sedative I took before the Imaging, I was a happy and compliant patient. As the MRI's went 'wack, wack, wack' I pretended to hear Native American Drumming, and soon it was all over. MRI's can be painful for me because of Trigeminal Neuralgia, but all went well.
On the third day I went to The Chiari Institute, where I met with a Nurse Practitioner, a Neurologist, and two Neuro-surgeons. The Neurologist showed me copies of my brain and spine Images, and there it was in front of me, the proof for my pain. I was glad to have taped the session, as after a while, I became numb as he delivered both GOOD and BAD news.
The GOOD NEWS is that I do NOT have Syringomyelia, which is a cyst of Cerebral Spinal Fluid (CSF) in my spinal cord. Thank you GOD!
The BAD News, or maybe I should say NEW news is that although my brain herniation of 7mm has not grown, I still have a CSF flow problem in the back of my brain, and I was diagnosed with the following:
1) Occult Tethered Cord Syndrome - that my spinal cord is matted down by tissues in my low back, and is tugging at my brain causing it to slump;
2) Cerebellar Slumping; that my brain is sagging; it may be caused by
3) An over large Foremen Magnum; which contributes to the slumping;
4) Cervical Instability; that my cervical spine is unstable, and
5) EDS (Ehlers-Danlos Syndrome) - A connective tissue disorder that causes joints to dislocate. They actually believe that many all of my medical issues are caused by this disease (hip dysplasia, degenerative disc disease, muscle weakness, and brain sagging);
So what does this all mean? Now what?
First of all, I begin traction for my neck and skull. I will be wearing a neck device during the day and when I drive that will allow me to protect my neck, and to pump up my skull, in hopes that this will improve the flow of CSF.
Second, I will consider taking Diamox, it's a drug that decreases the production of CSF. I have not yet decided whether I will take this, as it also can decrease potassium levels quickly.
Third, I will get my 'ducks in a row' and prepare for a Tethered Cord Surgery in 2009 in New York. This is a spinal surgery of my low back, and the recovery time can be much like having a spinal fusion. Which I'm all too familiar with. Prior to the surgery they want to do an Invasive Cervical Traction test. They will put my neck and skull in traction, and then wake me up and pump up my skull to see where I'm the most symptom free and comfortable. Great. Cannot wait:-) Actually, I've heard that it's not really that bad.
If you go to the Chiari Institute, bring pillows or chair supports, whatever you need to feel comfortable, because you do a lot of sitting, both on the day of testing, and at TCI. It's a nice office with TV's, but bring what ever you need to be comfortable.
Connie
Greetings family, friends, and all who reach this blogspot.
I have just returned from a two-day intensive medical appointment with Neurologists and Neurosurgeons at The Chiari Insitute in Great Neck New York. We flew into LaGuardia, a small airport that was only a 20 minute drive to The Variety House, a two-story brownstone for families and patients. It was nice to visit with others with similar medical histories (believe it or not). Some were even worse, so it made me grateful for the health I do have.
On the second day I underwent 3 hours of Imaging from the top of my skull to the bottom on my spine! The Imaging Technician looked just like my nephew Nathan, so between that and the sedative I took before the Imaging, I was a happy and compliant patient. As the MRI's went 'wack, wack, wack' I pretended to hear Native American Drumming, and soon it was all over. MRI's can be painful for me because of Trigeminal Neuralgia, but all went well.
On the third day I went to The Chiari Institute, where I met with a Nurse Practitioner, a Neurologist, and two Neuro-surgeons. The Neurologist showed me copies of my brain and spine Images, and there it was in front of me, the proof for my pain. I was glad to have taped the session, as after a while, I became numb as he delivered both GOOD and BAD news.
The GOOD NEWS is that I do NOT have Syringomyelia, which is a cyst of Cerebral Spinal Fluid (CSF) in my spinal cord. Thank you GOD!
The BAD News, or maybe I should say NEW news is that although my brain herniation of 7mm has not grown, I still have a CSF flow problem in the back of my brain, and I was diagnosed with the following:
1) Occult Tethered Cord Syndrome - that my spinal cord is matted down by tissues in my low back, and is tugging at my brain causing it to slump;
2) Cerebellar Slumping; that my brain is sagging; it may be caused by
3) An over large Foremen Magnum; which contributes to the slumping;
4) Cervical Instability; that my cervical spine is unstable, and
5) EDS (Ehlers-Danlos Syndrome) - A connective tissue disorder that causes joints to dislocate. They actually believe that many all of my medical issues are caused by this disease (hip dysplasia, degenerative disc disease, muscle weakness, and brain sagging);
So what does this all mean? Now what?
First of all, I begin traction for my neck and skull. I will be wearing a neck device during the day and when I drive that will allow me to protect my neck, and to pump up my skull, in hopes that this will improve the flow of CSF.
Second, I will consider taking Diamox, it's a drug that decreases the production of CSF. I have not yet decided whether I will take this, as it also can decrease potassium levels quickly.
Third, I will get my 'ducks in a row' and prepare for a Tethered Cord Surgery in 2009 in New York. This is a spinal surgery of my low back, and the recovery time can be much like having a spinal fusion. Which I'm all too familiar with. Prior to the surgery they want to do an Invasive Cervical Traction test. They will put my neck and skull in traction, and then wake me up and pump up my skull to see where I'm the most symptom free and comfortable. Great. Cannot wait:-) Actually, I've heard that it's not really that bad.
If you go to the Chiari Institute, bring pillows or chair supports, whatever you need to feel comfortable, because you do a lot of sitting, both on the day of testing, and at TCI. It's a nice office with TV's, but bring what ever you need to be comfortable.
Connie
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