[Tarabee]

Hi everyone,
I have researched the internet until my fingers are sore! A lot of info out there about Syringomyelia, enough to scare you, so I have decided not to play internet doctor about this. Today is just a bad day, slept very little last night and work is dragging today. I am having the strangest headache, the pain is behind my ears and like a crown, yet no pain in the forehead. Very painful and equally strange. My epidural has not given me relief from the pain yet and that was an injection from May 8. I go back to my doc on friday 23 May, and have started a notebook with questions in it. He is gonna love me! He is very short, and to the point. Again, is there anyone out there with Syringomyelia? Would love to talk with you.
Hope everyone is having a good day!

[tovaxin_lab_rat]

Hi Tarabee

There is a forum for our members with Syringomyelia. Here's the link. You might want to take a look there as well!

http://neurotalk.psychcentral.com/forum71.html

[braingonebad]

I was dx'd with SM in '04. The info is confusing to say the least.



I also have other health issues, which makes matters all the more confusing - is it the SM, the neck or whatever? LOL...

And who can you ask - all 10 of the other people with sm you meet online?



You'll get the hang of it, what it does to you. One thing I know, I cannot lift or move stuff like I used to or my hands get tingly, almost numb. Lifting more than say 10-15 lbs is supposed to force more fluid into the syrinx, so do try to avoid that, okay?


I'm on topamax for the headache and flector patch for the pain (which is mostly the neck).



I'm no longer surprised that my docs don't have any answers for me - none of them have had a patient with sm before, so how could they know? But being really good docs, they are open to learning.

[Tarabee]

WOW! Your the first person I have talked to who seems to understand. Are there really 10 whole people out there? HA HA! Have you had the epidural steriods yet? I have had one and no relief at all. My job requires I lift 70lbs, and they offer no light duty unless you have an OJI.... I do not know what to do about that. Right now it's kind of a "don't ask, don't tell" situation. But work is so exhausting and painful. I just feel like Im in limbo. Thanks for the reply. Take care and let me know if you learn anything new!!

[watsonsh]

Hey Tara,

I was just reading your headache post and saw this one. Thats quite heavy lifting. You might also want to take a look at the TOS forum. Lifting like that can have an impact on your brachial plexus nerves and could be part of the source of your headaches too.

[braingonebad]

Originally Posted by Tarabee

WOW! Your the first person I have talked to who seems to understand. Are there really 10 whole people out there? HA HA! Have you had the epidural steriods yet? I have had one and no relief at all. My job requires I lift 70lbs, and they offer no light duty unless you have an OJI.... I do not know what to do about that. Right now it's kind of a "don't ask, don't tell" situation. But work is so exhausting and painful. I just feel like Im in limbo. Thanks for the reply. Take care and let me know if you learn anything new!!

I had ESIs for my neck injury and they helped for that, and facet joint injections for the same injury - which alkso helped. But nothing really helps the SM except not making it worse.

I have not worked since '02 (part time) or 2000 full time. But I do watch my granddaughter who's 2, so I have to pick her up some.

70 lbs?



I haven't been able to lift that since I weighed that lol!

If I even bring in the groceries my hands go tingly. I have learned easier -less strainful ways to deal with chores and life in general. Like throwing, not carrying, wash down stairs. And a cart with big wheels to lug stuff around the yard. Things like that.

This year, I'm trying soaker hoses instead of dragging a hose around to water the flowers.

On top of the sm, the neck injury is messing with my arms. I had a lot of temporary paralysis in both arms. Let me tell ya, that is scary. I do not want to be that way forever, so I do whatever I can to not mess myself up more.

I could feel my syrinx for 15 yrs before I knew I had one. When they found it in '04, it was from T5 to T 8. Now it feels bigger, feels like there's a knee in my back. I don't even want to know what it looks like.

What I can tell you is this; if the doc says yours can't give you symptoms above the site, don't believe him. Mine does. If he says it won't get bigger, they do. Watch out for yourself. Try to find a position or job where you do not have to lift like tht before you cannot lift like that.

It May not happen, and I hope it doesn't. But I wouldn't chance it. I know what it's like to not be able to pull back a sheet, get out of bed and open my bedroom door. I wouldn't wish that on anyone.

BTW, my first sx of sm was I couldn't feel hot or cold in my fingers.

[Tarabee]

I am looking for another job, but when you have 16years experience with the airlines, it's not easy to tell people all that your capable of much more than just selling tickets and checking people in. Something will come around. I get tingling in my ring finger and thumbs, sometimes in the top of my hands.. I can feel hot and cold, but I find it difficult to hold on to things, my hands will twitch and shake, then just let go of what I am holding. I was sorry to hear about all you have been thru, you sound like a very strong person to deal with all that. Take care and chat with you soon........Tarabee

[watsonsh]

Hi Tarabee,

Some of the symptoms you describe are associated with TOS - Thoracic outlet syndrome, especially the tingling in your ring fnger. TOS can go hand in had with other spinal issues. I have TOS as well as a subluxed c6 disc.

I encourage to take a look at the TOS forum. If you do have any indications of TOS, lifting that amount of weight wi not good.

Also you have to be very careful with PT because it can aggravate the situation if not specifically tailored. Many therapists are not properly trained to deal with it and make things worse.

[razzle51]

Hi this is Roz . I sent you a email at the address you left on this site .