Chiari Malformation Community
Just diagnosed and surgery looming
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Just diagnosed and surgery looming

I was just diagnosed with Chiari malformation and severe syringomyelia. I was told that I need surgery and will finding out about it later this week. I don't know what to think about it. I'm worried about the recovery time and the surgery it's self. I've never had surgery before. Let alone something like this...
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

The best advice is making sure u r comfortable with ur Dr....and knowing that they tested u for all related conditions....Like disk issues,tethered cord, POTS, ICP,Ehlers-Danlos....as they can affect how u feel and heal post op....ask what all they plan to do for the surgery....lamenectomy,duraplasty, and if a duraplasty   what type of patch do they intend to use....

Only the NS u decide to go forward with surgery can tell u how they will do  this.....

  What symptoms r u dealing with at this time...and what do they mean by severe syrinx? (syringomyelia)

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hi,my daughter has syringomyelia..she has T6-T11,although she isnt in need of surgery right now..i can relate as such but i just wanted to tell you your not alone..and i wish i could be of more help but your not alone..
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Thanks, so much. I really appreciate the support. This is all very new.
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I have been having numbness, tingling, pain which started in my right side and spread to the inner part of my knee. I also have the same sensations from my left shoulder down to the back of my hand and has been getting worse. According to my MRI, most of my spinal cord is filled with spinal fluid (to the best of my knowledge). My neurologist is surprised I'm not experiencing worse symptoms. I don't know to much more but will find out more Friday, Nov 9 when I have my consultation with my neurosurgeon.
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620923_tn?1405964489

  Good luck on Friday, and do post an update on how things went : )
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1306714_tn?1327260680
Sorry to hear that you had to find that you have Chairi.  I know it is a hard word to absorb and to understand it.  I want to say you have found a wonderful site to come to for info and loving support.  We know what you are going through right now and just know your not alone in this.  Wishing you the best, and if you need anything I hope we can help you.
Linda :)
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My DD was diagnosed March with Chiari and syrinx.  Had pain in right shoulder down right arm and into her hand.  Also tingling in the fingers.  Surgery was on April 23.  MRI done last Friday shows syrinx reduction from 9.2 mm to 5 mm.  NS expects more shrinkage as time goes by.  Unfortunately the treatment for extensive syrinx is the decompression surgery, however the vast majority of surgeries are successful in reducing the syrinx.  Any questions feel free to ask :)
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hi..your not alone hun..because its so new to me too regarding my daughter..and its so new to all others going through problems with syringomelyia...,there is no handbook to follow,i wish it was that simple..but you are most definitley not alone...,you keep strong and keep posting,wishing you so much luck with best wishes x
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So, I found out that I am going to be getting a suboccipatal craniectory, C1 laminectory, duraplasty and possibly a lumbar drain placement (if there is to much pressure built up since my running along my entire spine from top to bottom is a syrinx). My neurosurgeon seems quite competent and defiantly made me feel better about the surgery. He is also surprised I'm not having worse symptoms considering my syrinx is running the entire length of my spine. So, that is one good thing. lets hope my syptoms (symptoms) dont progress any farther. as of now I still don't have my surgery date. I hate waiting and not knowing. Anyways,  I know my spelling is really bad. LOL so bear with me on that.
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620923_tn?1405964489

  Hi...I know waiting can be difficult but we have to learn to be patient.....
I also had a drain in the first few days I was in the hospital.....so it sounds like u r having the typical surgery....do u know what type of patch they will use for the dura plasty?

  Since u have not set the date I would find out the type of patch and rule out EDS if u haven't already....I am so happy that u found a Dr u r comfortable with, that is so important. <3 When u get ur date post on the surgery date thread
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4216987_tn?1359376464
Hi husky i hate the waiting game too I'm to go to a NS in December to see about MRI results  that I had done . I hope you will be ok and that all goes well with the surgery when you get it done ..my prayers are with u too .:):)
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