Chiari Malformation Community
New here, just diagnosed today, need some tips, ideas, help in general....
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New here, just diagnosed today, need some tips, ideas, help in general.

Im a just turned 30 construction worker for 13 years.   Ive never had a neck problem, or symptoms in general of this disorder previous to about three months ago.  Ive of course had knee surgerys aches and scrapes from the trade in general.   Three months ago I was blindsided by a large piece of equipment, a light plant to be precise.   Knocked me down pretty good.   Anyway and l&i claim was filed and suspected that I had a bulged disk or some similar problem with the way I landed.   Was diagnosed with this condition this morning, a 12cm protrusion,with a syrinx.  Symptoms were relitively minor at first, and i consider myself a pretty tough guy.  But Its progressivly gotten worse as time goes on.  Constant pressure headache, numbnessin hands, loss of strength, horrible fatigue, ect   I cant sleep at all.   Was wondering what is usually done for pain management while waiting for treatment options,  Ive had some norco but have refused to refill it to to stubborn tough guy syndrome.  Id didnt seem to do much anyway.  Is there any presidence to l&i allowing a claim for this due to symptoms occouring at time of injury?   Ive went ahead and got a consultation lined up for a lawyer if it comes to that.  Any other tips you can give?   Please forgive my spelling and grammatical errors, Im just a dumb construction worker and I was pretty suprised at this diagnosis, as was my provider,   she had never seen it and consulted with a neouro who am being reffered to to get the diagnosis.   Also, Im in the seattle area if theres any specialists that would be wise to see.
Thanks
Andy
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Well, first of all, please don't call yourself "just a dumb construction worker". Your contribution to building up our society is certainly of great value :-D Sorry, I just hate to see people get down on themselves due to level of education and such. I guess I'm just a dumb housewife. Lol! The best way to lean to spell well and have good grammar is to read and write: both which I do regularly. I once had aspirations to become a High School English teacher/novelist, so forgive my soapbox moment. :-D

Welcome to the forum. I'm sorry your condition has brought you here, but glad you've found us. There's a lot of great, supportive people on here.   My guess is that you, like me, have always had Chiari, but trauma caused it to get worse. I've suffered from headaches since I was a child, but that was my only real symptom until I slipped on spilled fabric softener(thanks to my then 2 year old) on the laundry room floor and fell and bashed my head into a door. I had a mild concussion and whiplash. A few months later, I started having crazy dizzy spells, vertigo, severe daily headaches, numbness in my rt hand, and severe muscle spasticity in my rt leg so it feels like I'm going to have a Charlie horse type cramp almost all the time. No fun.

The best advice I can give you is to get to a true Chiari specialist if you can. Most doctors don't seem to know much about Chiari, and what they do know is wrong. Lol! I'm sure someone will come on and link the page of recommended surgeons. I've had a battle to get into a dr who I felt was qualified. I was diagnosed in August and even have optic nerve seeking which is supposed to be an urgent matter, but I'm just finally having my first surgical consult with a surgeon at UCSF tomorrow. I would bet money that I have a thoracic syrinx too, but my dr has not been willing to order more MRIs to check, because she insists that my 5 mm herniation isn't large enough to cause problems. By the way, I'm sure yours in 12 millimeters, not centimeters.

Please stop the tough guy act. I know all about it.   I've always been a tough gal; hefty, hard working,  never afraid to pick up a hammer or crowbar to get a job done(renovated a condo by myself and landscaped my yard which required pickaxe to plant stuff, built a keystone retaining wall by myself too). My hubby is a wuss, and not handy at all. Lol!  You are sick. You are in pain. Please don't be too proud to take meds that help your pain. Being in pain affects so many aspects of your life, and even your personality. I take Oxycontin for the sake of my kids. I'm not very patient or nice when I'm in bad pain.

Well, I've gotta try to get some sleep. Funny how I'm so exhausted all the time, but have such a hard time sleeping some nights. What I suspect is my syrinx, is causing pretty bad searing pain in my mid back tonight, making sleep hard to come by. You will find that any nerve pain really won't be helped by pain meds anyway. So if your syrinx is painful, they won't help. Also, they won't help much with bad pressure headaches.

Well, welcome to the board, and I'm sure others will be on later with more, and better advice.

TTFN,
Jenn(34 year old SAHM to 4 great kids, 5 mm Chiari, optic nerve swelling, RA-type spinal arthritis)

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620923_tn?1413427272

Hi and welcome to the Chiari forum.

I have to agree with Jenny, don't sell urself short , we all make typos, and sometimes we catch and fix them sometimes we don't...but u r a valued person, here and I am sure at ur job.

The problem with filing a claim is many times this condition is congenital, and I am going to bet that urs is, otherwise it would not have shown up so quickly . A acquired form of syringomyelia the syrinx can happen as a result of an injury such as urs, but would take some time to form.

Since urs is there and progressing, I am more apt to believe that urs was always there and u were not aware of it or it's symptoms.

The injury u sustained did however trigger the symptoms and I am not sure that will help u win a claim,

We have a list of drs, and from what I understand u must go to a WC dr the first 90 days....for it to be covered....after that u can go to ur own dr, at least that is the law in the state of PA...be sure what and when u can go to a diff dr in ur state,

The names on our list r from members that have been to them and like the drs, u do have to research the dr....the list is not meant as a referral.

Since u have a syrinx u most likely have a CSF blockage, and the longer it is left untreated the bigger the possibility for perm nerve damage...so , do look into how to proceed to a sr with the proper experience...u do not want a NS that knows chiari and syringomyelia, u want one that deals with just chiari and related conditions.




http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483


Dr. Buchwald,
Dr. Maravilla
Dr. Ellenbogen
Ninth & Jefferson Building
908 Jefferson St., Fifth Floor
Seattle, WA 98104
206-744-9300


Dr. Gregory Foltz
Swedish Hospital
Seattle, WA
206-320-2800


We r happy to have u join us, but not happy for the reasons that had u seek us out.

"selma"
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Thanks for the input!  Yeah I was pretty emotional.   Im a single father of three and dont adjust well to these things.   I did find the clinic at the university of wa and hope to be guided there.   I also sustained a torn rotator cuff in the incident and hope that it will get me through financially while everything else works its course.   Im looking into continueing my insurance out of pocket to get treatment for chiari in the meantime.   Its pretty tough to deal with the symptoms so far and worry about supporting my family.   Cant even file for unemployment as the first question is are you physically able and available for work.....not really....lol   doc said dont do anything.   Used to golf when I got stressed and cant even do that.   Hopefully god willing things will work out,   Im looking at my children in a different light lately and seeing how much of a gift they are.      One more question.....my daughter is six years old,   been diagnosed with everything from cardiomyapathy to ms.......alot of her symptoms are chiari symptoms.....is it a genetic malformation?   Could I have passed it on to her or is it just the way infant develop?   Im definately gonna work and see if we can get her a mri       Thank you all for the help and its good to know there are others out there to turn to.
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620923_tn?1413427272
Hi....well at least u have the other injury to rely on for the finances...not that I am happy u were hurt,,,but I was in the same boat...I had a drop attack, the fall resulted in an injury that required surgery,...I needed to be off work.,..well once I got my dx, I could not go back and I could not collect...and I was turned down for my LTD as well.....so in a bind.

As for ur little one, there is still research going on, but from what I have seen in people I get to talk to, it does appear to run in families...so do have her checked.

Chiari is congenital...so u have it from birth...so a form of a birth defect in a way...the skull is mis shaped and causes the part of the brain called the cerebellum to be forced down onto the brain stem...since we have it from birth we tend to compensate and deal with how we feel and assume many of what r really symptoms r "normal" as how would we know...if u always feel a certain way u wouldn't.

No one knows y some of us have our symptoms triggered sooner than others...at a younger age...but chiari does cycle....and there r too many drs that r not well informed and mis dx what is going on....

Please keep us posted on ur situation and ur DD's as well.

I pray u have a Merry Christmas : )

"selma"
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1435895_tn?1304294841
Hello Andy and welcome!  I cant add much about Chiari and Syrinx that Selma hasnt already shared.  She is a wealth of great information.  What I feel like I can add is the injury leading to the diagnosis.  I was in a rear end collision in August.  I was stopped in traffic and an unlicensed driver hit me doing about 55 mph.  This caused a concussion and whiplash.  After 2 weeks of dizziness and confusion they ordered an MRI and guess what there my 8mm herniation was.  I had some random headaches before the accident and probably have been less than coordinated most of my life.  But nothing like this.  I have hired an attorney and have made my way to a true specialist in CM and I ask him that question why now, all these symptoms, if I was born with it?  His reply was your body learns to compensate for the deficits and the reasons why you loose that ability when you have head trauma is not really understood.  But he did say that at least half of symptomatic CM patients are there due to some type of trauma.  So you are not alone.  I think most definitely you will need an attorney may be a good idea to go ahead and find one that can make some things happen for you.  The adjuster's job is to try to get you to settle for the least amount possible and you will need long term medical care.  

I also have to sound off on the putting yourself down, dont sell yourself short.  You found us in one day took me a month.  There are lots of people with alot of education and no common sense and vice versa, who's to say which is better.   We are who we are and we all have an important place in this community.  

Best of luck to you!
Pam
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