I was going to the gym twice a day and working two jobs. I used to get a killer pain under my right shoulder blade and pain in right now my neck. Also tingling and numbness in my right arm. I thought it was from overdoing it at the gym and past injuries. Until one day I couldn’t move my neck and the pressure on base of skull was so bad I finally went to the GP who sent me for an MRI.
.I was diagnosed with chiari type 1- 8.4mm and severe syrinx, this was only a little while ago - mid December .
I went from being ok to collapsing in severe pain and spending two weeks over Christmas in hospital as they ran tests. They have me every drug possible and at times I still screamed out in pain never had I experienced pressure so bad on my neck. Drugs barely touched it I even had nurses with ice packs on my head.
Luckily the NHS got my surgery sorted quickly. But I still had to had to wait a month - they finally got my pain managed so I could go home before surgery- but what really saved me - was a high dosage of CBD oil. 5000mg.
Considering I was prescribed literally every drug they could give me (gabepentine 900mg 3 times a day) along with the morphine etc but it was actually the CBD that helped (on top of the rest) - just an idea for those struggling of course you can’t get that through prescription that was from a friend
Decompression surgery I was in hospital for 5 days after surgery, mostly tired as hooked up on IV morphine. Nurses, doctors just amazing
Once I was home I spent a good week mostly in bed, my parents looked after me and I walked a little each day. Before the surgery I had severe pressure on my neck so bad I kept collapsing they prescribed slow release morphine, oramorph, gabapentin, diazepam, amitriptiline, naproxen, paracetamol. - now after surgery I am on the same prescription, it’s week 3 post op and if I miss a single pill I find I’m in agony- severe headaches, but pressure on neck has gone. Pain is now at the front of the head and can move… but hey they had their hands in my brain what do I expect?
think of the worst hangover you’ve had- it feels like that!
Some days I’m out walking and going to coffee shop, others like today I have been in bed all day.
I think it’s important to just rest rest rest. Sleep eat well. I’m an active person so it is frustrating.
I live in Kent in England so they just transfer you to neurological to Kings in London, we don’t chose surgeons or anything like that. Everyone at kings is phenomenal
Prescriptions, surgery etc are all free so I’m very lucky it’s all been sorted so quick. I guess in other countries you have to chose a surgeon??? And hospital ?? I would say research then.
If you are nervous about surgery don’t be ! They are so lovely amazing and talented and at the end of the day the pain will lessen and you will get better.
I’m on light duties at work next week just see how I go. Remember everyone’s different I want to get up and about others may need at least couple months just in bed.
I know I will get better I was fighting for before and if I’ve endured the worst pain then a simple headache isn’t going to stop me.
Sending love and positivity to all. You can do this, get the surgery done and live a full life x
