SM

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SM

Postby RNBOBO » Tue Jan 01, 2008 1:19 pm

Newly diagnose MRI done couple months ago discovered SM from the bottom of my T2-T5. Second MRI tomorrow of my T-L spine to see extended damage. A lot of pain in upper back, neck, arms, shoulders, and primarly my right arm, swollen right hand at times. I'm a nurse, have never heard of SM, trying to get information about prognoses and sympotms. Unable to do "bedside nursing" due to severe pain- is this common? Current treatment amitrypline 75 mg, tylenol 2, advil, and ativan. Will it get worse ? Does anyone find that there is a lot of difficulty lifting, going from a sitting postition to a standing position. Can anyone describe their symptoms to me, I seem to be having a lot of symptoms. I should add I was rare-ended in an MVA in may of 2007. I live in Canada, things are a little bit different here but I am concerened about working in the future. Please anybody with any suggestions, any info, I would be greatful. Happy New Year And Blessings to All ! :)
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welcome

Postby razzle51 » Tue Jan 01, 2008 1:34 pm

Check with Caroline she is in Canada . Here is her site .

http://chiariandsyringomyeliaincanada.blogspot.com/
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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PTSM

Postby 3dmamix » Tue Jan 01, 2008 2:13 pm

I was dx with ptsm in December 2004 after I coughed and both pinky fingers went numb. I also shot the disc between C3 and C4 out into my spinal cord. The NS went in and removed three disc but did nothing with the syrinx extending down from C3 to T1. He said it has probably be there for 20 years, when I landed on my neck in a martial arts competition. After removing the disc's the numbness in my right arm was the same and is now getting progressively worse. All the NS had to say was I'm no NL! So I went to one back in May, two years after my surgery. I workout hard to stay in the best shape possible. I never know what I may have to recover from tomorrow. The better shape you're in the faster the recovery, I believe.
Now if I run too fast I have pain in my chest muscles and between my shoulder blades. If I cough real hard my right leg gets a little numbness but my right arm goes completely numb. I drop a lot of things, that pisses me off. My right arm has the constant "nerve burn" and I can't rest it on anything hard. Just starting to experience numbness in the right leg. I don't notice much on the left side. That might just be because it's less not necessarily because it's not there.
I go back to the NS on January 14th to see what he has to say. I did my research and you should too, before going to just anyone in your area. My NS is one of the best in Winston-Salem NC.
Just remember I may have had this for 20 years and can still out run alot of teenagers, at least for the first two miles. You learn to live with the pain and know your limitations.

David S.
Winston-Salem NC :lol:
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Postby loren67 » Tue Jan 01, 2008 2:21 pm

hey bobo, i am also a nurse and had to give up floor nursing to do care management. i am grateful to have a job, but miss direct patient care.
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Postby RNBOBO » Tue Jan 01, 2008 3:23 pm

Did you have any problems sitting for too long? Also, what about writing? As you know, nursing involves a lot of writing. I find that I have a lot of difficulty writing for a few mintues. The pain goes from my hand all the way to my shoulder. Has that happen to you being a case manager? Were you dx with PTS??
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pretty much so, dx.

Postby 3dmamix » Tue Jan 01, 2008 3:46 pm

I have had MRIs from my scull to my tail bone, no tumors found. I went to see my parents on Christmas eve and felt it for several days. It was only a three hour trip but weird pains popped up here and there that I hadn't experienced before. I don't travel much these days. I don't take anything for pain unless it gets really bad, then I take advil. If I have to write a lot I have to shake the numbness out every so often, it is a bit of an irritation. Typing is much easier but you can't alway count on that. The worst thing I believe is coughing. It rushes to much spinal fluid in a burst and shuts thing down. I have a bad coughing spell from Feb. through Mar. that's why I trying to get to the NS now before it starts. My NL said he may be able to drain the cyst without a shunt. He said it looks like I have multiple pockets instead on one large one. I won't know until I talk to the NS on the 14th. Hang in there and get in the best shape you can while you can.
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Postby cash71 » Tue Jan 01, 2008 4:16 pm

HI and welcome. I've been "away" for a few weeks taking a break from posting and enjoying the holidays with my family.

I am in Canada too and also an RN. Roz posted my blogsite above where I describe my symptoms in detail. If you look at the first couple of posts there it will save me re typing it all.

I have trouble writing too. I get very painful muscle spasms whenever I grip anything for more than a minute or so. It is very difficult to write, blow dry my hair or chop veggies anymore. I am no longer able to work either and am on LTD.

I had an MVA 13 years ago and this is when most of my symptoms started but it was not recognized as a syrinx at the time and I signed off on the legal papers unfortunately. I wish I knew then what I know now.

It's impossible for anyone to tell you if your symptoms will get worse b/c everyone is completely different. Some people continue to worsen, some stay the same for decades and about 1% of syrinxes spontaneously resolve. So do what you can to limit its chances of worsening. Don't lift anything heavy (anything that you have to bear down to lift is too heavy), no straining (this also raises your intracranial pressure which can increase the size of a syrinx) and let your body be your guide. If it hurts DON"T DO IT!!! sm is very unforgiving so keep fit but do it gently, no bouncing around too much and take things slowly and let your body guide you on what will work for you.

There are not a lot of great docs here in Canada but I can do my best to help you if you need it. Just pm me where you live and I can see what I can dredge up.

Welcome again and let me know if I can help further.

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby Ryzing » Tue Jan 01, 2008 7:37 pm

I have a horrible time writing, too. Dropping things is something that is getting bad for me, also - and it's embarassing :oops: . I'm with Caroline - my hand cramps up terribly if I have to hold something for too long. I just tried to write my pen pal in Cali a letter tonight and I ended it with a, "p.s. if you can't read this, e-mail me and I'll try to help you decipher it".

Diane

p.s. Welcome to ASAP, RNBOBO!
Syringomyelia - C4-T12, Fibromyalgia, Scoliosis, DDD
"If you don't change your beliefs, your life will be like this forever. Is that good news?"
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Postby loren67 » Wed Jan 02, 2008 8:00 pm

the majority of my job is on the computer. i had difficulty sitting before my detethering and still sometimes, but changing positions or getting up and stretching helps, everyone is used to me getting up during meetings and moving around the room. as far as writing before my surgery, i would get what is best described as hand fatigue. i also had the dropsies and decreased sensation in my right hand, actually lighting my thumb on fire when i was lighting my son's birthday candles and not realizing it until my sister screamed and my thumb was charred. those are better since detethering. my sm is felt to be from tethered cord which caused both the sm and mild cm, both of which i still have after being detethered, but most of my neuro. symptoms were from the tethering and are gone, with a few still hanging around because of the sm and cm.
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