Progression Of Syrinx.....How can one tell how fast or slow?

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Progression Of Syrinx.....How can one tell how fast or slow?

Postby Harrybaby666 » Fri Feb 11, 2011 2:21 pm

Hi All,

Over the past month I have been keeping a close eye on my symptoms from my Syrinx and I have noticed that Stress and Anger most definitely causes a rapid start to a flare up of my SM symptoms....Arguement the night before caused unbearable pain to set in the next morning and slowly subside to a semi tolerable level over the next 4 days...and then I attempted to vaccuum...BIG MISTAKE...not only did it take me over an hour and a half just to vaccuum one room in my house, but it also caused severe pain to again set in sometime during the night and has become totally unbearable ever since, and now I am once again having trouble controlling my right hand and arm and one minute I am feeling tingles go up and down my arm and into my fingers, and the next numbness and more severe loss of control over my right hand ( I am having a ton of trouble typing this).

I went to the neurologist yesterday and Dr. Warach tested my nerve sensitivity up and down my back and I am getting numb spots up and down my spinal area and I told him about the extreme difficulties I am now having putting on my under garments, pants and shoes and socks, constantly dropping things out of my right hand and stiffness.....The stiffness is really getting bad...I am feeling it in my fingers (joints) in my legs, in my upper and mid back range and it seems to really be severe in my upper back, shoulder and upper arm areas and yet it also seems to travel around...one minute I am really getting it in the shoulders, arms and upper back and fingers and then a few minutes to a few hours later the stiffness would seemingly move to my legs.....As for weakness, I am progressively getting weaker and weaker when I stand or walk and I am now waiting 4 to 6 months for my wheelchair and I am wondering what is going to happen next....Harry :mrgreen:

That being said, is there anyone here who might be able to give me some insight into whether or not this SM (I do NOT have the Chiari Malformation...my Syrinx was caused by a Spinal Tumor) has the tendency to progress more rapidly, or does it normally progress at a slow rate? My symptoms seem to be easily triggered and they seem to come on quite quickly.

Thank Yall In Advance For Any Insight You Might Be Able To Help Me With.
I may not be able to kneel to pray, but I can still bow my head to give thanks and to pray.....
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Re: Progression Of Syrinx.....How can one tell how fast or slow?

Postby phyrehawke » Sat Feb 12, 2011 2:59 pm

Judging whether or not SM is slow or fast progressing requires multiple MRI's over time. It could also be that the spinal tumor is putting pressure on your cord too...that can also mess up nerve signals in a way similar to SM.
I have my own theory on the problems that come and go a lot. I think of it as "reactive SM", as in the symptoms are reactive to inflammation, or reactive to changes in body chemistry or environmental stuff (like barometric pressure), or certain postures that go with particular activities. Over years of watching other people with SM with different causes, I personally believe that a lot of the more stable forms of SM are due to Chiari, and a lot of the less stable forms are due to the "other causes" of SM (incomplete cord injuries, tumors, etc.), or PTSM. Sometimes SM doesn't progress at all for some people, in others it can be stable for years and progress quickly after an accident, even a seemingly incidental one...like a normal person would've been fine but for us the "whoops!" a big problem. Sometimes just a little bit more pressure on the spinal cord (from inside or outside) is the straw that broke the camel's back, so to speak, and suddenly there are lots of problems. Sometimes the problems/damage is permanent, and sometimes it's temporary.

Another thing I've been looking into lately is inflammation chemistry. A traditional American diet has an Omega 3 to 6 ratio of 1:20, and a Paleo Diet (what we ate before we got over-civilized) had a ratio of 1:1. The 1:1 ratio was a big help in fighting inflammatory conditions. Eating in a modern way, and having a condition that can both cause and over-react to inflammation, there is just no way we can get enough natural anti-inflammatory foods to break even. Plus we have a diet full of sugar/carbs (inflammatory comfort foods) and neuro-toxic chemicals like asparatame/Equal and MSG which cause the nervous system to fire like crazy and can heighten sensitivity to pain and other things. Again, these things are fine for normal people, not fine for many of us. So we end up with this downward spiral of inflammatory conditions in addition to problems from the SM. We can supplement natural anti-inflammatories...but check with your doc first. Some of them can interact with meds.

My NL made a good point about emotional states when I first saw him. Good feelings and experiences create more endorphins and more dopamine which translates into less pain. So do what you love as often as you can. Do things that make you smile and laugh...movies, tv, books that makes you happy, not sad. Bad feelings and anxiety cause a chronic stress chemistry, which enhances inflammation, causing more pain, so avoid getting frequently upset or continually anxious. Blood vessels also widen when we are angry or embarrassed and they can put temporary pressure on nerves too, resulting in symptoms that come and go quickly.
And anytime you've got inflammation already and engage in an activity which is likely to cause more, you are going to increase your pain level. That's just the way it works and we have to figure out a way to make it livable. I've had SM for over 20 years now and the hardest thing for me was learning to ask for h... h... help. I still have a hard time with it, but my friends have made it clear that they've benefitted from my friendship a long time and are happy to give back if I would just let them know how. It's usually a lot less trouble for them than it is for me, and they know it and are glad to save me the pain.
Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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