Chiari Online Support Group

Steroids before surgery

Is it normal to be given steroids before a surgery is even scheduled? My daughter is just getting over the influenza and I know steroids lower the immune system so I am scared of getting sick! I am on day 2 of taking them. They tapper off at day 6 but I am worried about what I do if I get sick with this horrible influenza she has. She has had a fever for 6 days and is just finally feeling better. Meanwhile I am worried what could happen to me if I catch it from her!

I had steroids a 5 day course before decompression surgery. They didn’t help me much ( mine was for pain) so they threw every other drug they could at me to stop the agony. If won’t effect surgery or anything. Not to worry :slight_smile:

Ok thanks. I have been using essential oils and it’s been really helping but I just read this morning that many of the oils can thin the blood and that’s no good for surgery… so I’m disappointed since it was really helping my head and neck to use them every couple hours.

I haven’t read that yet. Thank you for sharing! I regularly use essential oils for my daughter and the rest of my family as well.

They did say not to use “herbal” remedies before surgery. (At least two weeks before) it said on my info sheet they emailed me. But I was told on the Friday I was going to have surgery on the Sunday. :rofl: So didn’t really get the notice but they didn’t seem to care. I was on a huge amount of drugs and my cbd. The biggest thing was not to take blood thinners - drugs like naproxen before surgery.

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Sophia,

Did you already have the surgery? How did it go and how are you doing now? How long ago did you have it?

Hi yes I have. Diagnosed mid December, although I had pains for a while I put it down to overdoing it at the gym. Then it got so bad I couldn’t move my neck one day.
Saw my GP December who referred me for MRI and found out I had chiari 1 8.5mm with very severe syrinx in spine and neck… it must have just reached such a tipping point that the next week I collapsed in pain and ended up in hospital over Christmas :sob:
2 weeks in hospital they had me on every drug and still crying in pain - nurses even had ice on my neck. They finally found the magic amount to keep my pain just about managed, and like I said - then with the help of my friend who gave me CBD oil I could wait, the NHS is pretty good from diagnosis to surgery wasn’t even two months and free so can’t complain- but my heart goes out to anyone enduring that pressure and pain.
I just waited to hear from kings hospital - London where all the neurosurgeons are. They called me feb 1st and I was up in London and had decompression surgery on the 4th feb you don’t chose neurosurgeon. They are all amazing.
They said surgery was successful. But due to how bad my spine was I may need a shunt in the future - only if slim chance this doesn’t work, which is no drama as they know me now and it’s a quicker recovery.
Trust me you not really going to want to leave bed for two weeks After.
I was so active (gym twice a day kinda thing) I am now at week four and back at work but only light duties and luckily they said can work from home a lot.
I’m fine if I take all my tablets the moment I don’t I can be in absolute agony. The pain before surgery was like the most horrific pressure in my neck and base of skull. Pain indescribable and came out of nowhere. Tingling and numbness in right arm.

But since surgery that pain has gone and has moved to my forehead, like the very worst hangover, I also have sever pain in my thoracic spine i never had before - i hope that’s a sign of things moving where they need too. Are you in uk? For £30 you can have endless prescriptions. And trust me - if you are anything like me you will need them. Considering I was mostly pain free till December and thinking I’m hard as nails, I’m telling you ——take all the relief you can get!

I’m currently on oral morphine 5ml every few hours( I try not to take this)
slow release morphine zomproph 40mg a day, naproxen - 2x a day, paracetamol 3x day, 900mg gabepentine 3x a day (I usually take half that) amitriptyline only at night, diazepam 3 x a day (usually only take one at night or if I’m bad)

  • of course then they provide you with omeprazole, and lots of laxatives to counteract all those pills.

As you can see that’s a serious amount of drugs! It gives you an idea that although I’m not taking all of what is fully prescribed all of the time - I’m pretty close to it. If I miss lunchtime drugs I’m extremely ill by dinner.
I’m 31 and super fit so I hate to take anything / like if I had a headache before I wouldn’t even touch paracetamol. - hence why I’m being naughty and rest the water by not taking full amount.
I’m working this week I’m finding it ok but I need to just sleep and rest outside of work.
You won’t feel sociable!
If you can have 2 months off - I would! Honestly you gotta face with decompression first couple months are rough so just have the right meds for after and rest rest rest.
But once it’s done it’s done! I’m happier now I know I’m only going to get better, I’m hoping the gym in a week or two- just walking on treadmill mind
All the best with your surgery, you are in the best hands and like I say recovery is about rest and pain relief make sure they prescribe so you can be comfortable, and you can do it online and just pick them up from chemist because they free from then on, I’m literally in there each week and I need a suitcase for everything :joy:
I’ve had a few surgeries in my life (UK and one in thailand) all been amazing and brilliant after care, I’m not nervous I know I’m in the best hands, I just literally say yes get it done ASAP.
So if anyone’s nervous don’t be just get it done put your health first - by the way I was in hospital for 5 days after decompression. then my parents cooked for me the week after as I just wanted to be horizontal haha
My follow up appointment is in April and they may refer me to physio which if you in uk ask for as it is free
Sending positive healing vibes xxx

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