Chiari Online Support Group

Giant Syrinx! going in for surgery help and prayers needed!

This is my Syrinx and Chiari Malformation it’s huge and goes from C2 to T12 I’m terrified I’m not going to live much longer if anyone knows any info about this please let me know I have a Neurosurgeon Dr. Ankit Mehta that wants to do Decompression surgery and possibly a shunt. I’m so scared of ending up paralyzed or dead… so far my symptoms have been

Weakness in my arms and legs but I’m still able to walk and pick things up so far. I get tired very easily though

Numbness all over from my forehead to my feet

Double vision in one eye I’m blind in the other the blindness was from a pre existing injury but the double vision in my good eye is new

Pain occasionally in my neck and back

Bowel and Bladder difficulties more so bowel sometimes I don’t have a movement for over 24 hours after eating a decent sized meal and if I do it’s a small amount… sorry I know it’s gross to talk about that.

Please any comments are welcome I’m driving myself crazy waiting for surgery and I’m scared of my future I’m 25yrs Old if anyone has any knowledge of surgical outcomes let me know I’ve read a lot of bad things about it… I hope I atleast don’t get worse…

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Jesse- I hope you get some really great responses here. Surgery is always worrisome. I know a few teenagers who have had the surgery that you’re talking about, and they’ve done well. I tutor, so I often work with kids while they’re out of school.

I hope that it goes smoothly. When is the surgery scheduled for?

Sharon

Hi nice to talk to you. Surgery is supposed to be on Wednesday the 18th at university of Illinois. With dr Ankit Mehta. Thank you for your well wishes I hope everything goes good also.

I was incredibly anxious before my surgery. I didn’t have a syrinx, so your situation is a little different than mine. My decompression surgery in Dec. 2016 has been very helpful. My symptoms have improved drastically. Are you confident in your neurosurgeon? I live in the St. Louis area and had my surgery at Barnes Jewish Hospital, which is staffed by Washington University physicians. Their neurosurgery dept is ranked 11th in the nation. If you are in Illinois, St. Louis is not all that far away. You could get a second opinion, although I realize a syrinx means you need surgery sooner rather than later. Dr. Albert Kim was my surgeon. He is a chiari expert. Best of luck to you!

My syrinx collapsed after decompression surgery. The issues I had with my arms and legs going numb went away. Pray that this will be the case for you too.

I’m praying hard for recovery but it’s scary looking it up especially with mine being as large as it is. I know I could end up with permanent nerve damage, but the crazy thing is I had no symptoms a month ago and now I got all these. About how long was your recovery time after decompression?

Hi how long was your recovery period? I know you didn’t have a Syrinx I wish I didn’t the numbness and weakness throughout all my limbs is terrifying. Mine is apparently larger than anything they’ve seen by me from C2 to T12 and it’s wide so idk what my outcome is going to be I hope I get some function back. Thank you for your response.

I was off work for 6 weeks, but up and about by 2 weeks post-surgery. My surgery was 10 days before Christmas, and I remember attending a family Christmas party and doing pretty well. I just tired very easily for a while due to the anesthesia that remains in your system for weeks after. I hope you get some function back, too. Your symptoms sound really challenging. Hang in there! It sounds like you have a number of questions about what to expect. If I were you, I would call your surgeon to ask them before your surgery. The more you know, the more you can prepare and set realistic expectations.

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good luck with your surgery Jim

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