Just Diagnosed

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Just Diagnosed

Postby jj » Tue Jun 12, 2007 5:51 pm

Hello All,

I am 26 and last week I was diagnosed with a posttraumatic syrinx. The pain is constant, but manageable most of the time as long as I take advil or aleve. Every once and a while it gets bad. Also I have had some hot flashes and two mornings where my left arm was numb.

I have been doing my research on the net and have found a number of beneficial sites. I am scheduling an appt with a neurosurgeon and looking for one with experience with syrinx treatment in North Carolina or Florida. Why NC or Florida you ask? Well I live in NC and have planned on attending the Univ. of Florida this fall for graduate school. This decision may change based on what the recommendation of the NS is. Right now I can deal with the symptoms, but if they get much worse, I am unsure I can could get through graduate school without surgery.

Any recommendations for doctors in NC or FL would be appreciated, along with any opinions on whether I should go to grad school (I would be covered with a health plan through the univ. but i am unsure how good it is) or keep my full time job with its blue cross blue shield coverage. Also I am interested to hear about how fast the symptoms progressed in people.

Thanks for any insight.

Postby precious » Tue Jun 12, 2007 7:20 pm

JJ, Welcome to Asap! I am also pretty new at this. I dont have any recomendations for the schooling and job sorry on that part. I am 28 and was Dx in Feb with my syrinx they dont was mine is caused from as of yet, but Ironic that you ask how fast syptoms travel I started out with chronic back pain and my hand's and wrist started going numb, pins and needles sensation. now this week it started traveling from my shoulders down my arms when doing my hair and just today with in the last 2 hours it has been constant pins and needlles. But every ones case is different. I have noticed that Cash71 has some great sights that she can refer for you to look at. Welcome! We are all in this together.
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Postby cash71 » Tue Jun 12, 2007 7:50 pm


Welcome to the site, I'm so glad that you found your way here. I'm sure this is all feeling pretty overwhelming right now but try not to stress too much, that usually makes all of your symptoms worse. We are all here for you and will give you all the help and support you need.

It's really hard to tell you how quickly it will progress as everyone is an individual. In a lot of people symptoms progress over decades. I believe my syrinx started from an MVA that I had in 1994. I have had very manageable symptoms and was unaware I had the syrinx until very recently. I have only started to have symptoms really affect my everyday life in the last 2 years.

If at all possible I would go to Dr. Green seeing how you will be going to school in Florida

Barth Green, MD.
Professor and Chairman
Department of Neurosurgery
University of Miami
Miami, Florida
The Miami Project to Cure Paralysis

He has been well recommended by many people here and is on the ASAP medical advisory board.

I think as far as future plans you should let your body be your guide. With this disorder you just can't push thru the pain like with other things. You will only make things worse. But if you are feeling like your symptoms are manageable, go for it. Don't let SM stand in the way of your dreams if you are phyically up to it.

I'll give you a few of my favorite websites to start with. For me the more I learned the better I felt. It's the unknown that is truly frightening. So check out www.thechiariinstitute.com there are great videos, also http://www.chiariconnectioninternational.com/ and the ASAP homepage has some great info and articles too.

Hope this helps answer a few of your questions and again, welcome!

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 jj » Mon Jun 18, 2007 11:13 am

Thanks guys.

I especially like the videos, they really explain things better than my doctor has been able to.

Postby Cyborg Ninja » Fri Jun 22, 2007 1:16 am

I live in Tallahassee and went to FSU for a while. If you need help, like need a ride or anything, I'd be willing to help. Gainesville is only a few hours away.
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