Chiari Online Support Group

Surgery recovery - London - Positive

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

1 Like

Fantastic news, congratulations on your surgery and speedy recovery! So nice to hear positive news and outcomes are real and possible. How blessed you are to have all your medical needs met so quickly and without worrying of mounting bills. Please keep us updated as to your progress. God bless you :purple_heart:
Angel

Well done to you your positive attitude is great. Hope you continue to improve.

Hi please could you tell me which type of CBD oil you used. Thank you

Hi just an update - once again some days are better than others, I missed a couple of days off the slow release morphine (zomorph) and my goodness my back was agony, it was like I was severely winded - hit hard between my shoulder blades. (Hopefully that means things are moving and working again) Week 4 and would just say whatever they’ve prescribed you keep taking it! I’m super against meds but in this case up until the 8 week mark I think it’s best to take all the drugs prescribed and go easy. When I do this I can go to work, and go for walks fine. CBD isn’t really helping now, or maybe it is I’m not sure as I’m just taking everything and that keeps me going. 5000mg not really sure much more about it but spreading to my friend tomorrow who can give me some more info and maybe recommend something else. I’m all for alternatives. Anyway I would say most of the time I’m ok - my scar has faded so much! Barely noticeable.