I got a urgent call this morning from my NS stating I needed a new MRi and Cine MRI as soon as possible.
He said that I most likely have a Blockage. Because I have syrinx in my back and the current pain rise I have. The crazy thing is that I am only a 6-7mm.
I was wondering what should I discuss with my NS?
Would surgery be more difficult if I had a blockage? What’s the risk of blockages?
Thank you reading.
Wow, that is scary to get a call like that! I don't have any answers to your questions, but I hope everything ends up being ok!
From what I have read, I don't think the length has any determination on if it could cause a blockage or not though. And a blockage could lead to permanent damage if not corrected from my understanding
Sydney, one important thing to remember, if your surgeon thought you were in danger he would have you hospitalized immediately.
While it's obviously scary to know your doctor wants testing done now, that doesn't mean something unusual or worse is happening. Just by the nature of Chiari, you have been living with blockage for a long time. That is what caused your syrinx. Not saying it isn't something that needs taken care of, but I don't think it's time for panic mode.
I always go by a saying I heard a long time ago: Don't bleed until you are shot. Meaning, until you are told there is reason to panic, there isn't a reason to panic. I hope that makes sense.
{{{HUGS}}} I am sorry you are going through this, I hope you can get your surgery over and done with soon.
Aw, I understand. It's scary to go through this, I am sure even more scary if you are young.
Just one word of advice, if you are in the hospital you have the right to speak up for yourself. You can keep pushing that nurses button as often as you need to get your medicine, you don't have to feel like you are at their mercy. Please don't worry about them thinking you are a pain in the butt or whatever. Sometimes they get busy, sometimes they are just lazy or forgetful-- whatever the case, if you feel like they have forgotten you, keep at them until you get results- it's their job. Just because you are teen doesn't mean you have to put up with 'whatever' kind of treatment, know what I mean?
I'm telling you this because I always felt like I didn't want to bother anyone and learned over the years that if I don't open my mouth, they won't know I am still waiting. If you feel intimidated, ask your mom or another person to speak up for you.
I just don't want you to get lost in the shuffle because you are young! (and I'm a mom, so I hate to hear about kids care being neglected lol)
Keep us updated on how things are going!
Ill be pulling for you I have a 17 and 13 year old daughter and a 16 year old son and I cannot imagine them going through what I’m going through. Good luck girlie and Wendy is right speak up you are such a brave girl my thoughts are with you
Hi..
Sounds like your NS is ontop of things by ordering the CINE....Praying for you...let us know how it goes.
Hope you’re better <3
Sydney, one of the things that led me to my Chiari diagnosis was my hearing loss, which is considered a direct result of my Chiari. Unfortunately, surgery didnt restore my hearing. I knew that was highly possible going into it though, my hearing loss happened long before I sought help for my issues. That is one of the reasons I think surgery is an important option- even if it isnt a cure. Slowing down the progression can prevent damage before it is irreversable. I really wish i would have been able to salvage my hearing by treating this earlier, had i known (I have moderate to severe hearing loss in both ears)
It sounds like your hearing loss is a recent development so hopefully it will just be a temporary thing.