Heading Into The Next Phase

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Heading Into The Next Phase

Postby gunflint » Sun Nov 23, 2014 8:12 am

I just returned from NIH. Traveling is just not as fun as it used to be. Three years after my decompression there has been no change in my syrinx. I'm fine with this as no change is better then growth. My pain symptoms are finally under control as I've recently changed from hydrocodone to Hydromorphone. I was very reluctant to make the change because I've always thought of "Lortabs" as not much more than strong asprin and I didn't want to get into the heavier narcotics. This was a mistake. I haven't been this free of pain for a couple of years. Lesson learned. I have also found major relief using Graybo's advice. Anyone can search some of his posts for more info on that.

On to the results of my last visit. I have been experiencing some new symptoms relating to loss of sensation and occasional lack of coordination when standing and walking. The famous "Cape Effect" has begun and I have been having some difficulty standing and walking (like I'm on stilts sometimes.) Also at rest with my eyes closed I can't tell what my hands and feet are doing unless I open my eyes or move something. I've been tearing up the internet trying to find a journal or anything related to the progression of these symptoms but I haven't had any luck. If anyone can point me in that direction I would be very thankful. I feel very lucky compared to most with SM and I'm very appreciative of this forum and the help available from the members here. I hope everyone has a great thanksgiving. i know that I'm truely grateful for all I have.
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Re: Heading Into The Next Phase

Postby pmaxwell » Tue Nov 25, 2014 9:39 am

So happy the pain is under control. No one wants to take medication on a regular basis but sometimes it is the difference between having a good quality of life or a poor one. It is possible the symptoms are temporary. Winter is hard on SM patients as is traveling. Loss of proprioceptive if common with spinal cord injury (from the syrinx, scar tissue or even CSF pressure). Maybe a water aerobics class would be beneficial. Many have found the warm water and exercise a valuable benefit to prevent lost, and help with symptoms.

Thank you for posting.

wishing you a great Thanksgiving!

Together We Can...
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Re: Heading Into The Next Phase

Postby marymac » Mon Jun 15, 2015 8:31 pm

Hi Ho Gunflint: better late than never? I adore Graybo and all of his crazy and not so crazy ideas: he is an absolute gem and we're lucky he shares so much with us: he even made video's for me. Knows more than my doctors do and look at him: in the video's: headstands, really??? Hope your symptoms slow down my friend.
Central disc herniations C5-6 and C6-7, extensive syringohydromyelia cavity throughout the cervical & thoracic cord (large syrinx from C6 inferiorly.)

"Every day is a gift: Thats why it's called the Present"
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