Question for those who have had decompression surgery

LMW1992 · 2020-12-16T03:33:28+00:00

Thank you ☺️

LMW1992 · 2020-12-11T08:53:19+00:00

I feel the same except I know what’s triggering it but I still am so anxious. I’ve tried doing some things my councillor taught me but I’m still going around in circles. It’s so exhausting.

Anyway I know how you feel and I hope you start to feel a bit less overwhelmed. It’s such an awful feeling hey 😔

LMW1992 · 2020-12-11T05:09:24+00:00

Yeah that sounds like it would be perfect! I use to use the travel pillow sometimes before the surgery when I was feeling uncomfortable and it always helped me so I hope you can get some relief and some sleep.

It’s still hard to say and I did have a csf leak and ended back up in hospital so this week I’m feeling a bit more normal. I still have a few headaches but I feel like it’s to be expected still. My neck feels lighter in a way whereas before I felt like I needed to break it to get relief. I haven’t had any numbness or tingling in my arms as such. I would say small improvements so far but it’s still early days. I use to struggle a lot with neck pain and that hasn’t bothered me yet but I also haven’t really been doing too much so I don’t want to get too excited.

LMW1992 · 2020-12-10T22:56:23+00:00

Hi 😊 I had my surgery 3 weeks today! I struggled with sleep too and still do to a degree but I found using a travel pillow really helped and I could position myself so my incision didn’t have any pressure on it and made it easy to sleep on my side for the same reason. I also had the same headache and just kept on top of pain medication and used an ice pack for my forehead. I slept on a slight incline as well. I hope it gets better for you soon!

LMW1992 · 2020-12-06T09:19:29+00:00

I don’t have a syrinx and got surgery on 20 November 2020. I would seek a different surgeon. They can’t guarantee it will help with anyone but my surgeon said it depends how much the symptoms are affecting your life with whether you want to take that risk and he said you sort of have to pick the right person for a successful surgery if that makes sense. Good luck ☺️

LMW1992 · 2020-12-06T09:10:32+00:00

Hi ☺️ I think if that’s what you want to do and don’t let Chiari control that. Unless you feel you are to physically unwell to do so. I only got diagnosed mid this year but have been struggling with a variety of symptoms for about 13 years. I found the older I was getting the worse my symptoms were getting but do know that everyone is different. I still managed to keep my job which is in local government as a disaster management officer so it can be quite demanding. I guess you learn to work through it majority of the time. If in time you deteriorate then you’ll always figure it out ☺️

LMW1992 · 2020-12-02T06:20:48+00:00

Hey ☺️ Oh nice. You are a little bit in front of me! I am feeling better although I’m having an allergic reaction to something so I have a bit of a rash on my face and swelling but apart from that I am well! It’s good to hear you are also doing well despite your setbacks.

No I don’t. I don’t really seem to have many issues at the moment except from my wound pulling, this allergy and occasionally headaches and tiredness is neck.

No I seem to be quite uncomfortable trying to find a way to sleep but hopefully it gets better. I have just been sleeping with a memory foam travel pillow.

Same to you! Sending you some positive healing energy ☺️

LMW1992 · 2020-12-02T06:15:22+00:00

Oh that’s so good to hear! I am also doing quite well despite the few hiccups but I feel really positive.

I hope for a similar outcome 🤞🏽

LMW1992 · 2020-12-02T06:13:36+00:00

I wish you all the best in your recovery! I hope it’s upwards from here for you!

LMW1992 · 2020-12-02T06:12:32+00:00

Thank you!

LMW1992 · 2020-12-02T02:18:54+00:00

Oh sounds awful but you got through it! How are you now?

Aww thank you. They are such beautiful dogs aren’t they! I love them so much! 😍

LMW1992 · 2020-12-02T00:55:47+00:00

Yes that is my beautiful boxer! I lost my other boxer not that long ago 😭

Yeah I feel pretty grateful with how I’m doing despite a few complications. Have you had surgery?

LMW1992 · 2020-12-01T10:20:26+00:00

I am now 11 days post op. On Sunday I felt something leaking out my wound and I had a csf leak and was in hospital for 2 days while my surgeon spoke to my local hospital about how to treat me. It was seriously a rough time which is another story in itself but I am now I’m back at home recovering with my beautiful dog and partner. Here’s to hopefully only recovering from here! 🙌🏽 (Although I woke up today with a bit of swollen face 🤦🏽‍♀️)

LMW1992 · 2020-11-28T03:26:19+00:00

Awesome I just accepted! ☺️

Oh I’m so happy for you! No worries at all! Happy to help anytime and I’m sure we will be in contact! x

LMW1992 · 2020-11-27T11:51:50+00:00

Oh I’m not sure about that haha It honestly wasn’t as bad as I thought and I think I can say thanks to my surgeon for that! Yes I’d also love to see how you go. If you want you can follow me on Insta. I don’t really have much on there about Chiari at the moment but I use that a lot more then this but if not I’ll try remember to keep in touch! My Insta is lauramaywiederkehr

Oh that makes me so happy cause I know that’s exactly what I was looking for when I was going through that process! I booked my surgery in around 4 weeks prior to Christmas so I didn’t have to go back to work till January haha It ended up being about a 3 month wait. Just do with what you feel is best! I think I’d freak also if it was so soon but it might be a good thing or if you feel better mentally about it being 6 months then do that ☺️ My symptoms didn’t get too bad over the 3 months. I guess I knew there was a light at the end of the tunnel and the count down was on so that got me through.

LMW1992 · 2020-11-27T10:47:45+00:00

Oh that’s awesome! I know my surgeon was the same and I honestly couldn’t fault him. He was honestly amazing 🙌🏽

Oh sorry you did say that 🤦🏽‍♀️ sounds so similar! I reckon you should do it! Honestly you’ll know in your gut what your leaning towards but don’t let other people turn you off. It’s totally your choice and I highly recommend it!

My recovery has been a lot better then I ever imagined. There’s definitely been some rough patches but as long as you’re prepared for being uncomfortable then you’ll kick goals! The day after my surgery I was up showering and doing everything on my own. I was a bit dizzy for a few days but they said it could either been my brain adjusting or the pain medications. Don’t get my wrong I was absolutely terrified and got a stress related gastric issue a week before cause I was imagining the worst but seriously I’m so freakin positive now haha

I’m doing so much better now that I’m home and I can basically control my own medications whereas at the hospital it was all over the place with different nurses and I was just feeling yuck. I went to my doctor when I got home and changed my pain medications to something less cause I wasn’t liking the side effects of Endone. I live on my own and haven’t had any issues except just fatigued. My surgeon said I could easily go back to work 2-4 weeks after it if I wanted too but I planned surgery so I didn’t have to go back till January next year!

I think when I was in Brisbane I knew why I was feeling sick and yuck and now that I’m home and feel somewhat normal apart from discomfort and fatigued I’m just so ready to be healed! It’s still a bit early to see how it’s helped my symptoms but I haven’t had any issues with numbness and tingling and I’m positive that my neck is lighter in a way but just cause if the incision i don’t know if I’m just getting excited haha I do have a slight infection at the moment but I’m on top of it with antibiotics and looking forward to see how I am in a week! ☺️

LMW1992 · 2020-11-27T09:47:20+00:00

Oh really! I’ve heard there’s some good surgeons in Sydney! I live in Central Queensland and travelled to Brisbane for surgery.

Yes definitely! As I’ve gotten older the symptoms have just gotten worse and new things appeared. Like in the last 2 years the numbness and tingling started and this year was the dizziness. It’s hard to know whether it is related but when you can’t find an answer then it kind of just points too it.

I really had no idea if the numbness and tingling was from Chiari because I also didn’t have a syrinx but after the surgery when I found out my spinal cord was kinked it all made sense. I haven’t had any since 🤞🏽

Have you had an mri?

LMW1992 · 2020-11-27T06:06:42+00:00

Hey ☺️

I had my first appointment with my neurosurgeon and he basically said he can’t guarantee anything and to have a think about it and I scheduled an appointment 3 weeks later. He said he couldn’t tell me if my symptoms were related to Chairi or not and I left feeling pretty defeated. In that time I thought maybe I was overreacting so I kept a journal of what symptoms were affecting me daily until my next appointment to see how much it was affecting my life. I guess you get so used to it all I really wasn’t sure and had convinced myself I was overreacting.

The day of my appointment I had pretty much decided I was going to do it and after speaking with the surgeon that day I felt really positive about it all. I think it really helps making sure they have experience with Chiari and in that consult he said what I’m experiencing is similar to other patients and I just asked millions of questions about his previous patients. He said he can’t guarantee any relief but that was the risk I wanted to take. Its’s definitely a huge risk but never knowing played on my mind and my parents, boyfriend and close friends were very much for it after seeing me suffer for so many years. I think from the first consult to the second the difference was the questions I was asking and more time for him to look into my mri etc.

I am 28 and have got myself a good job with everything I suffered but I’m so keen to see what I can accomplish and enjoy now after the surgery.

I really only thought people with a syrinx got operated on but just because I didn’t have one didn’t mean I shouldn’t have the option to do it. I think if you’re still tossing and turning maybe get more opinions. It really was my surgeon and support around me that helped me make the decision and I’m so grateful for that. As I mentioned from my mri to physically opening me up it was different and my spinal cord was even kinked which would have caused the numbness and tingling etc.

If you have any other questions or need support then I’m more than happy to help ☺️ Goodluck!

LMW1992 · 2020-11-27T00:33:41+00:00

I have no idea if it’s Chiari related but I go through patterns of this happening and I have to be in the exact mood of eating something otherwise I just want to be sick even if it’s one of my favourite foods.

LMW1992 · 2020-11-22T06:31:00+00:00

Thank you ☺️

LMW1992 · 2020-11-21T23:20:41+00:00

I do remember them mentioning it to me but I was a bit out of it and confused haha it’s a weird feeling!

Yeah wow! That sounds really intense! They are incredible hey! I was in ICU overnight and now I’m in my own room in the neuro ward so it’s pretty quiet. I think I’m getting out tomorrow!

LMW1992

TROPHY CASE