No question just yet -- just venting!

[Kel052478]

Hi there, I'm new here ... like to meet new people but I have to admit I wish I never had to deal with something like this. I'm a nurse ... we're supposed to take care of other people and don't particularly like it when we have to care for ourselves unfortunately. I was diagnosed with Chiari Type 1 and associated syringomyelia a few months ago. I guess I've been lucky so far, because I've been pretty much asymptomatic for my whole life. Looking back, I guess there were times where I did have symptoms -- bad headaches, strange pain and sensations in my joint/extremities, back pain, etc. It was nothing severe and I didn't think anything was amiss. I am glad that I got diagnosed ... and wasn't one of those poor souls who are misdiagnosed for years on end and told there isn't anything wrong. I am scared but my faith/spirituality is strong ... I will fight this however I can ... but the possibility of being disabled is terrifying. I am extremely active ... I'm a runner and had hoped to do my first 1/2 marathon in May ... I'm not sure if that will be a realistic goal at this point ... I'll be happy if I can still walk! Anyway, it's encouraging to hear many of the positive stories that are posted here ... it's given me hope that I can emerge from this and still lead a healthy and active lifestyle. My surgery is in 15 days ... I have an excellent surgeon who is very familiar with this condition and has treated it successfully many times in the past ... that in itself is half the battle right? I wish everyone well and look forward to speaking with some of you!

[pdxmomof3boys]

I ditto ditto and ditto :) I just had my surgery two weeks ago and am feeling WAY better now than before they wheeled me back to surgery! It's amazing. Take it easy and try not to stress -- rely on your faith. Stress makes your symptoms worse for sure! Just make sure to line up plenty of help for post-surgery, or be sure to have some frozen meals in the freezer and enough of everything to keep you off your feet. It's hard, as a mom, to be slowing down and taking care of myself and allowing others to take care of me (I am still not doing that well!) but it's important to healing. I'm sure as a nurse, as you said, it's almost impossible! You will get through this and be stronger and healthier for it. This community is the best thing that could've ever happened to me. I wouldn't have had the surgery and wouldn't be feeling so much better today without the support of these amazing people who know what you are going through. Any question, any frustration -- this is the place for you to air it. Best of luck!!!

Rosemarie

[*Stormy*]

Welcome, don't worry about venting, that's all I've done since I joined here! It's great to have people that understand what you are going through.

I was a runner as well, I had stopped for awhile because I wasn't feeling well and didn't know what was going on. I was advised by my GP to go back to running because I was just run down and *stressed*. I did this and my symptoms got rapidly worse until I was diagnosed. Not wanting to scare you but I feel like going back to running definitely made it worse. It's a good thing to discuss with your surgeon post op anyway.

I had my surgery 4 weeks ago so I can still remember the nervousness. Mine went really well and I am healing great. Good luck to you!

[selmaS]

I wanted to welcome u to the forum and our little family here as well : )

I echo everything  Shannon has said too .

I hope u find the support and info u seek here and sorry u had to seek us out...I wouldn't wish this on neone either and I agree with u on being an active person, this can be difficult to deal with as it does take time to heal and we must move forward slowly.

"selma"

[shanmomof3]

Hi and welcome to the forum! I'm glad you found a surgeon you are comfortable with. You mentioned a syrinx too, but did they check you for tethered cord, DDD, or EDS? Just some things that can go with chiari but are not always looked for. I wish you success with your surgery! Be sure to post your surgery date on our surgery thread. And keep us posted! Blessings :) Shannon