Syrinx decrease

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Syrinx decrease

Postby reedy » Sat Jul 28, 2012 2:49 pm

Some good news!
Scans have just shown that my surgery in April has resulted in my syrinx decreasing in length. It used to go to T5, now its stopping at about T1-T2. Its zipping up a bit. I also have a big fat cyst up higher that was subjected to syringotomy, but its still sitting plump and probably unchanged. Dr Heiss also did a duraplasty and arachnoid separation - not clear what the long term effects of these will be.

On my symptoms, I think its likely my hand deterioration has decreased and maybe stabilised (though its hard to judge and early to tell). This was the key objective in my surgery, so it can be classed as a success. There was a price, which was predicted in advance, and I'd say I've paid it but its acceptable - my walking has decreased in coordination and I have more foot drop. I'm often a real spaghetti legs now. My pain levels are also present, but acceptable. I'm working on decreasing my meds. I am much more spacey that I used to be, but I can't tell if that's the meds or the I'm slowly trying to get both to a lower level and see if I get some brain cells back.

So it can happen....thanks to a perceptive, attentive surgeon.
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Re: Syrinx decrease

Postby gunflint » Sat Jul 28, 2012 3:52 pm

It does sound like overall good news. I'm happy for you. I'll be seeing Dr Heiss on Halloween. I hope that's not an omen.
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Re: Syrinx decrease

Postby phyrehawke » Sat Jul 28, 2012 11:31 pm

A shrinking syrinx is great news! No matter how you got it to happen.
You've maintained such a good attitude through all this. It's so good to hear things are moving in the right direction, and hopefully stability will not be far behind?
Although no matter what I do I find the balance between the meds and the pain a tough one to juggle sometimes, even with a fairly stable syrinx.
"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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Re: Syrinx decrease

Postby Catrine » Mon Jul 30, 2012 6:12 am

Hey Reedy

Glad to hear that some of your syrinx has shrunk!! That's great news. Sounds like you've got the right guy in your corner. :D

I'll be in touch soon

Re: Syrinx decrease

Postby June » Mon Jul 30, 2012 6:13 pm

Such good news! I hope your improvement continues, especially your hand. Good for you to have this happen--you've been through some tough times. It is your turn for some good times!
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Re: Syrinx decrease

Postby syrinx48 » Tue Jul 31, 2012 11:50 am

Hi Reedy,

I am so glad with the progression you are making. Such a good news! Hopefully your arm will also move into the right direction. Only time will tell, and I hope you can be patient. You did the right thing by going to the USA, to this study, and you must be gratefull that they accepted you in the study!

How are things in London, it must be overcrowded now with the olympic games. 2 sons of us are going to watch the games one of the next days.

The one who was for a period of time in Birmingham has a job now and works in a hospital as a professional doctor. My other son too, but in a different Hospital.

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