Hi everyone, this my first ever post! I’ve been reading for a few months, since my diagnosis of Chiari and syringomyelia in late January. I’ve been pretty lucky compared to others in that as soon as it was discovered, my GP got me straight into a great neurosurgeon. Both of my Drs have been wonderful in telling me how it is and that because of SM that I need the surgery as I’m having symptoms and they don’t want it to get worse. My GP was ruling out MS when we found this! I’d never even heard of it and freaked out straight away! Anyway, I have had 2 surgery dates cancelled by the hospital and am now waiting to hear from them about Monday. If they don’t ring to cancel, they will ring this afternoon to tell me what time to come in, fasting etc… I’m now officially getting really scared! I’m in Australia and it is Mother’s Day on Sunday, so I’ll enjoy being spoilt by my 2 girls! Anyway, just felt like sharing my anxiety about it all because most of you know how I’m feeling! Hope you all have a happy, pain free day! Michelle xx
Thanks so much Beeba! My first surgery was booked for March 31st, so you would think I’d be ready and organised! I had actually read your list and showed my husband and I started going through it! Kitchen is all ready for hubby, school is on board, baby sitters lined up for my just turned 4 year old! My hubby is actually quite domesticated and can clean, cook, manage everything!When I first saw my NS, he said exactly that - because I have the syrinx and tingles, numbness, weakness he doesn’t want it to get worse and it wasn’t really a question of IF I have surgery, but when! He also explined that this isn’t a cure, just a treatment to stop progression of my symptoms. But somedays I don’t feel too bad and I think do I really need it?! I know I do! I would much rather a quick wait! When I got told my first date, I had a full blown panic attack! Then they cancelled that, then another date (no panic this time!!) then cancelled again! Now they still haven’t rung to cancel so looks like it might go ahead! I’ll let you know what happens!! Have a happy, painless day! Xx
Michelle
I am with you on the anxiety! My surgery is next month and it is about all I can think of. Please let us know how it goes and how you are feeling. Best wishes!
Thank you so much everyone. We all go through so much just to try to be ‘normal’ don’t we?! Don’t talk about rollercoasters! I love them, now I’m just the bag holder!!! Well, the hospital rang and I have to be at there at 6am in Monday morning! All systems go! Now I’m really starting to worry! Stress does not help us with our symptoms does it?! It’s 4.30am here, all my family are fast asleep and I have a major headache! Thanks everyone for your thoughts and prayers, it means a lot! I’ll make sure I let you know how I go! Michelle xx
I am too waiting for my surgery in June. Its so hard I want it to get it done and over with but at the same time June is creeping up fast. I think wait makes it worse in someways because you read so much and some of the stuff is scary. I am glad that you all are here ans we can support each other.
Kristy said:
MichelleI am with you on the anxiety! My surgery is next month and it is about all I can think of. Please let us know how it goes and how you are feeling. Best wishes!
Hi Michelle!
I wish you the best for your surgery tomorrow. I was so anxious the day before my surgery, but I finally figured out that it was because I couldn't wait to get it done. I told my boyfriend (now husband) that I felt like a kid the night before they go to Disney World. On my way to the OR, I felt like I was in a parade because my family was behind me. I know it's weird, but I was excited to get it done because of how terrible my life usually was with progressed Chiari symptoms.
I hope you, too, can find the positives in your surgery experience. Even though it can be difficult for a few months, I hope everything heals and your quality of life is the best it's ever been.
I'm sending you all the support I can. You can do it! Also, Beeba's system works wonders. It's very close to what I did before and after my surgery, too.
Michelle said:
Thank you so much everyone. We all go through so much just to try to be 'normal' don't we?! Don't talk about rollercoasters! I love them, now I'm just the bag holder!!! Well, the hospital rang and I have to be at there at 6am in Monday morning! All systems go! Now I'm really starting to worry! Stress does not help us with our symptoms does it?! It's 4.30am here, all my family are fast asleep and I have a major headache! Thanks everyone for your thoughts and prayers, it means a lot! I'll make sure I let you know how I go! Michelle xx
Hello Michelle! I just want to say I’m praying for you and great relief from your surgery tomorrow! It sounds like you have a wonderful support team that will allow you to relax during your recovery. I haven’t had surgery yet but my preop is this Tuesday. I’m getting a little nervous for that just because I know surgery will follow shortly behind so I do understand your worry. I know it’s easier said than done but try and stay positive and think of how much relief you will have soon! Let us know how you are doing when your up to it. From what I’ve learned here everyone says rest, rest, rest don’t overdo it even if you feel well. Take care and God Bless!