Some Questions From The New Guy

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Some Questions From The New Guy

Postby gunflint » Fri Jun 17, 2011 9:34 am

I have some questions for the experts. I'm sure there will be many more but here's the first set.

I know that I'm not supposed to do much straining like lifting, roller coaster riding, sky diving, etc. but why? Could I cough myself into a wheelchair or blow a gasket? Does it just mean I'll pay for it latter in the day or could I do permanent damage?

What do you tell friends and associates? I'm not one to share a lot of my private life but sooner or later you're going to have to say something. I barely understand syringomyelia myself let alone trying to explain it to some else. I want to say it's like a non-cancerous tumor in the spine just to keep it simple but I'm not sure that's accurate.

For those of you in wheel chairs. Did that come on sudden or slowly over time?

I don't want to go into all of my symptoms here but does the pain keep getting worse over time or is it more that you keep having new symptoms pop up?

Pain Meds. When symptoms began to show up a couple of years ago I was prescribed 40 lortabs a month. Several months ago it was raised to 80. After my diagnosis it was raised to 180. Are there more effective pain meds that I should be asking for?

This question should probably be in a different thread but I'm on a roll here. I have heard that once you apply for SSDI you are no longer eligible for unemployment. Is that true?

Thanks again.
gunflint
 
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Re: Some Questions From The New Guy

Postby karenb » Fri Jun 17, 2011 3:30 pm

Hi Gunflint,

I'll give your questions a shot... I'm sure others will correct me if I mis-speak or over-simplify... and please pardon the length of this post...

gunflint wrote:I know that I'm not supposed to do much straining like lifting, roller coaster riding, sky diving, etc. but why? Could I cough myself into a wheelchair or blow a gasket? Does it just mean I'll pay for it latter in the day or could I do permanent damage?


Straining and jarring can increase Cerebrospinal Fluid (CSF) pressure within your spinal column and syrinx. This could cause your syrinx to expand (in length or width) or place additional pressure on nerves that are already affected by your syrinx. Limited straining may cause temporary problems - that is, you'll pay for it later in the day, and possibly for days to come. Jarring action (e.g. roller-coaster or sky-diving) can actually cause permanent injury (e.g. make your syrinx longer or wider, so it affects more nerve fibers in the spinal cord).

gunflint wrote:What do you tell friends and associates? ... I want to say it's like a non-cancerous tumor in the spine just to keep it simple but I'm not sure that's accurate.


I told very few of my associates about my condition, since I worked in a large corporate environment, and the company has a lot of motivation to get rid of you if you're ill. If somebody asks what I have, I'll usually just say "Syringomyelia". If they press for more information, I'll simply tell them that I have a "mass" that is destroying my spinal cord from the inside out. I figure that, unless they're personal friends, it's none of their business.

gunflint wrote:For those of you in wheel chairs. Did that come on sudden or slowly over time?


I started out using a walker because I'm a fall risk. With time, I started recognizing situations that increased the risk (crowds, open spaces with few chairs, fatigue later in the day, etc), and started using my wheelchair at those times. About 2-1/2 years ago, I needed surgery on my left hand, and was never able to regain the strength or stamina to use the walker safely, so I am now using the wheelchair all the time. (I can still use the walker some in the house).

gunflint wrote:I don't want to go into all of my symptoms here but does the pain keep getting worse over time or is it more that you keep having new symptoms pop up?


At least for me, my pain & symptoms seems to increase in stages - I'll go along just fine, and one day realize that "this just ain't cuttin' it anymore". I think things probably increased gradually, but my realization that they increased is what comes in stages. Denial probably also plays a role... I don't want new symptoms, so I refuse to recognize them until something hits me upside the head.

gunflint wrote:Pain Meds. When symptoms began to show up a couple of years ago I was prescribed 40 lortabs a month. Several months ago it was raised to 80. After my diagnosis it was raised to 180. Are there more effective pain meds that I should be asking for?


I don't have very effective pain management right now, so I'm probably not the best one to comment. A lot of folks on the board speak very highly of working with a pain management specialist to get the best pain management you can with a minimum of side effects. Comments anyone?

gunflint wrote:This question should probably be in a different thread but I'm on a roll here. I have heard that once you apply for SSDI you are no longer eligible for unemployment. Is that true?


I'm not 100% sure, but it probably is. When you're on SSDI, you are physically unable to work - collecting unemployment implies that you are physically able to work but no job is available. I do know of people who ended up on unemployment due to their medical condition, and the six months they were on unemployment was counted as their waiting period before becoming elegible for SSDI. Comments anyone?

I hope at least some of my babbling is helpful to you...

Karen
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