Wondering if this is trauma or lifelong

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Wondering if this is trauma or lifelong

Postby akgirl » Wed Mar 26, 2008 6:37 pm

HI all
I know this have been discussed before from other posts I've gone back and read. I'm wondering if this is truely from trauma 9 months ago or could the syrinx been there all along.
All the symptoms started a while after my fall last June so it made sense to me that it was post trauma. But as I learn more about SM I'm not so sure.

My question is: could I have had it, been born with it (as one DR believes) and the fall trigger the symptoms?

I've had headaches all my life. I wore glasses at an early age (6 months!) and everyone always assumed that they were caused from my eyes/straining.
I have a major problem with sweating even before the fall happened. I barely have to be up and moving around and I'm sweating. Summers here are awful for me. My poor kids are always stuck inside b/c mom doesn't want to go anwhere because it's too hot!
I know this can just be from overload or old age but for the last couple of years I have a hard time trying to find the word I'm looking for. It's so frustrating. It's like I'm grasping but it's completely gone. So I plug in words like "thing and stuff".

Anyway, I'm just wondering what you guys might think. Is it possible to have had it dormant and trauma trigger it?

Thanks!
Karen

P.S. This site is a life-saver!!!
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Postby donny » Wed Mar 26, 2008 7:12 pm

Trauma can trigger sm but doesnt mean it did, its just if you have sm and not aware of it a caugh, sneeze or trauma can trigger it. these are very common triggers.
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Postby cash71 » Wed Mar 26, 2008 8:57 pm

HI Karen,

IMHO Doctor's that say you were born with it are coping out. This statement releases them from really looking for the cause. I think it is rare for someone to be born with a syrinx.

I asked Dr. B this question specifically when I was at TCI last summer b/c I have been told this same thing and he said "I can assure you, you were not born with it"

I had an MVA 12 years ago which "triggered" my symptoms to start too although looking back with perfect hindsight vision I can see things about my childhood health that were "weird"

I think the causes of a syrinx can be there lying dormant and then something triggers it. In other words I think the conditions that cause sm will be there at birth but not usually the syrinx. For me I have chiari zero and occult tethered cord. So these things I was born with and they became worse with various traumas I have had to my head and neck and the effects of good old gravity over time.

Some of your symptoms sound more like chiari to me. It would be hard to know if you had it or not as there only a couple docs in the states that will diagnose this. I have a 0mm herniation but my posterior fossa measures too small and I had crowding visible on my MRI which is blocking CSF flow enough to have helped cause a syrinx.

I don't know if this makes any sense or helps you at all. These are just my experiences and thoughts on the subject. The BEST research paper to read would probably be Dr. Milhorat's "Chiari Redefined" http://statlink.duke.edu/medstat/pdf/milhorat-et-al.pdf I know you have sm but this paper goes thru some of the genetic set-up that can take place and why it is being missed by most radiologists and ns. It could help clear a few things up.

Hope this is helpful,

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 ke4uzj » Wed Mar 26, 2008 10:23 pm

mine is post trauma, i have been told it could have been there before and the trauma set off the symptoms,but i have also been told that the trauma could have caused it . since we don't know if it were there before the assumption is the trauma caused it since it is at same level. basically it is anyones guess,and depends on the doctors assumption. of course each doc has a different opinion.
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Postby akgirl » Wed Mar 26, 2008 10:44 pm

Thanks for all your input. It's so helpful.

Caroline - I was wondering about Chairi and if I would need a brain MRI to diagnose it. Thanks for all of the awesome links you post!

I guess I was hoping when all of this began that it could be proven that SM was from the trauma because the hotel it happened at would pay for my medical bills. They are paying for the first 3 years or $15,000. I'm getting worried, because as you all know, all off these dr visits and MRIs add up quickly. I don't have any other health insurance and am finding that it will probably be impossible to get coverage now with this condition.

Again, thanks so much for your knowledge and imput. This is most definately a learning process.

Karen
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Postby ke4uzj » Wed Mar 26, 2008 11:00 pm

check your state for open enrollment....they are doing that now for pre existing conditions,and i know what i found here in Alabama is only 119.00
a month
my lawyer is telling me since there were never any mri's before accident i can't prove it was not there before even though it is at same level as injury. they always find a way to screw the victim .

but, if i were you i would search open enrollment for your state, and see what you get.
hope this helps
TO BEAT STRESS:
LIVE BETTER, KISS SLOWER, HUG TIGHTER, BREATHER DEEPER, AND IF ALL ELSE FAILS THROW STUFF : )-

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Give us the grace to see a joke,
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Postby donny » Wed Mar 26, 2008 11:25 pm

Hello again, I guess i missunderstood or didnt explain very well at all
SM usually does have a cause as Caroline has said and sometimes the cause is difficult to find. Chiari is one cause of sm but there are others. Finding the cause is whats important.
You do need a brain mri to diagnose cm and a flow study to measure the csf flow (cine mri).
Most experts also would want a complete spine mri to find tethered cord or any other conditions. I doi agree with carolines post but trauma can and does aggrivate sm or cm or both.
As far as trauma causing sm or cm to become symtomatic my wifes cm became symtomatic after an accident and yes insurance companies will do what they can to avoid responsability but the law is on your side because even with a preexisting condition if it wasnt bothering you before the trauma and it is now the insurance company can be held responsable. In other words the courts would classify it close to not even being there before the trauma.
dont sign your rights away
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Postby SMLady » Thu Mar 27, 2008 11:34 am

Hi akgirl, and welcome. My doctors all said that same thing (been to 3 neurosurgeons and one doctor who specializes in sm/cm. They can't find anything else wrong with me either. When they couldn't find anything, he kept telling me that I would have HAD to at least been injured at one time, but no - nothing. I've hard more MRI's than my husband has hair, and the only thing they find are the 3 syrinx's, the bulging discs, and the scoliosis. yay for me!

I hope you get some answers. Take care.....
Proud Mom of One Son
Idiopathic SM T1 - T9, DDD, Scoliosis, Pinched Nerves, Bulging Discs, Spondylosis, Stenosis
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The Man who walks with God always gets to his destination.
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Postby cash71 » Thu Mar 27, 2008 11:34 am

HI Karen, Glad my links are helpful. I am a researching junkie!! This is my coping mechanism. You do need a head MRI to rule out chiari but unfortunately if it is chiari zero you need an expert to read it. Just a "regular" ns will read chiari zero as normal. A CINE MRI may give you additional info about how CSF flow if being affected.

Like Don said even if you had a pre existing condition like cm the trauma still caused the syrinx to form. I would think that this would give you some legal rights to compensation.

I found a great law blog http://www.braininjurylawblog.com/about ... ion-4.html A lot of it is about cm but if you hunt around there is also info about sm. There are references to articles that might help you as well as personal stories from folks.

HTH,

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 streetsense » Thu Mar 27, 2008 12:11 pm

I agree with donny and cash. Even if there was some pre-existing condition, an accident that causes you problems with it you didn't have before leaves responsibility for that with those who are liable for the accident.

I went through the same BS with my work-related injuries. I was told I was probably "born with" the problems in my back. Yes, the syrinx appears on the 1992 MRI. No, there was NOTHING about syringomyelia or any mention of the syrinx in the evaluation I had by that neurosurgeon.

I'm trying right now to get the radiologist's report of the MRI. Too much time has passed to take legal action against those involved, but it will give me some peace of mind knowing that I was lied to by the NS if the radiologist notes that the syrinx was present. I'll definitely advise others in my community about the need for caution in any interaction with corrupt and unethical practices like that.

The fact that the neurosurgeon was more interested in protecting the previous misdiagnoses of his colleagues and my former employer says a lot. He didn't bother mentioning the syrinx and came up the the BS story about being "born with" my problem, when it was clearly the result of a documented injury that I was not properly treated for by others in the clinic he worked for. Even if I was born with it, it never caused a problem prior to the accident.
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Postby akgirl » Thu Mar 27, 2008 6:08 pm

This site is like a fix for me! I'm here all the time now!

I'm hoping some of you might be able to help me with whole insurance thing. The hotel's insurance rep is, of course, claiming they were not neglegent (sp?) however they raised my claim ceiling from $5000-15,000 and from 2 to 3 years. I didn't expect them to admit to liability. But I wonder if it's worth persuing. I really don't want to spend all my time and energy trying to win a case and have to hire a lawyer, if that's necessary. But I'm looking at the long-term and IF my symptoms continue to progress as they have been then I will need to have a guarantee that there's money to pay for all of this down the road.

Have any of you had to file a lawsuit for your condition? And if so, how did you work?

There's so much to think about and I'm really feeling overwhelmed today. I just want to be a Mom today and not deal with all of this.

Thanks all!

Karen
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Postby cash71 » Thu Mar 27, 2008 8:58 pm

Hi Karen,

I can't advise you what to do but I can tell you what I did and how it has impacted me.

I had my MVA 14years ago (I did the math wrong before) After the accident I had a bad whiplash and had severe headaches and neck pain, numbness and tingling down my right arm and sweating on one side of my face. I went and saw a NL who scoffed at me and said is was just a simple whiplash and quit making a big deal so being young and stupid I settled my lawsuit and signed on the dotted line releasing the woman who hit me from any future responsibility.

Now, of course I didn't know at the time that it caused a syrinx and that I would have life time issues but I wish I did. Now i need two surgeries that cost almost $800,000 and I can't afford it. I wish I could go back and undo that signature.

So think long and hard before you sign off on anything. Maybe you won't have future problems but what if you do....

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 Snoozie » Thu Mar 27, 2008 9:16 pm

I was in a MVA accident which caused my PTSM. I won my case although I would give it all back and some to just have my normal life back.

I believe the cutoff for personal injury is 2 years so be careful with them telling you 3. Not positive so check it out.

You can always talk to a lawyer for free and have the contract read that they only get paid if you get paid.

I hope you get some answers and some help soon. Feel better and ask any questions that come to mind...Sue
Seek peace, and pursue it. (Proverbs 34:14)”
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Postby donny » Thu Mar 27, 2008 11:06 pm

Hi Some states is 2 years some its 3 and some if the problem isnt diagnosed within 180 days forget it.
If you did try to pursue any legal thing you would need to hire an attorney but most every attorney works on a percentage basis, if you lose the case neither you or the attorney get anything and he wouldnt be charging you a dime, if you won then you both get whatever was agreed to.
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Postby ke4uzj » Thu Mar 27, 2008 11:10 pm

Alabama is 3 but they just recently over the past few years changed that
I believe ( do not hold me to this) that it was 2 yrs before .
TO BEAT STRESS:
LIVE BETTER, KISS SLOWER, HUG TIGHTER, BREATHER DEEPER, AND IF ALL ELSE FAILS THROW STUFF : )-

Give us a sense of humor, Lord,
Give us the grace to see a joke,
To get some humor out of life,
And pass it on to other folk.
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