Due brain surgery

Hi hope everyone is doing as well as can be. As well as MS I have Chairi Malformation. I have had various tests as well as an ICP procedure. Enough evidence to suggest chairi is the cause of my symptoms and pressure on my brain is 32. Should only be between 7 and 15. Anyway I am booked to go in 7th March to have decompression and duraplasty surgery. It is big operation. But have been told 85% chance I could go from being in the wheelchair to be back walking with my sticks. There is also chance I could end up more disabled. Also recovery from operation can last from months to years. Neurosurgeon thinks it is very likely I will take relapse. So my question is has anyone had major surgery. If so did u have a relapse. And is it the anisthetic or the stress of the operation that brings a relapse on. Thanks x

Maybe not quite the same but I had two pulmonary embolisms which put me a lot closer to god than was comfortable. The trauma on my body caused a relapse but after a few months everything stabilised again which was a relief. I have also had a couple of ops which have set me back but on each occasion my body fought back and got me back to where I was. Hopefully the same will happen to you.


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hi violet

wishing you the most positive of outcomes.

your neurosurgeon has said that it is likely to be positive.

that old cliche “prepare for the worst, hope for the best” seems appropriate.

however why not prepare for the best.

get your sticks dusted off!

relapse is Sh*t but no stranger to you.

love and healing wishes.

carole x

I also want to send you my very wishes for a positive outcome.

It’s daunting, but worth it, I’m sure.

I’ve not heard of chairi. malformation, so I’ll Google it.

Polls x

I hadnt heard of it either Polls. Its where your brain is to big for your skull. And it drops out ure skull towards your spine. Csf fluid then gets blocked causing build up and pressure on the brain. The symptoms are the same as MS. I was only diagnosed as my symptoms where gtn worse but there was no change in my lesions. So my neuroligist went away looked over all my mri’s and discovered it. That was 2014. I had 6 mri’s by then, was in every one. But no one noticed it. And I was probably born with confition. Which made sence as i had my first symtoms when I was 11, over 30 years ago. But doctors always told me migrains, panick attacks or all in ma head.

Hi Violet,

I’m full of admiration for the courage you have.
Wishing you all the best for your future.


Thank you Anthony for your kind words x

Hi Violet

It sounds utterly terrifying. You are being incredibly brave at the prospect of your surgery.

Sorry, I have nothing more to add to your question about major surgery and possible relapse.

Hoping all goes well for you.


Hi, I had a nephrectomy (kidney removal) and didn’t notice any increase in ms symptoms or a relapse afterwards. I am also due surgery soon (nephrectomy and ileal conduit urostomy ) but I’m Spms now and don’t relapse anymore. Hope your surgery goes well and that your MS behaves afterwards. x

  • Hi violet just sending u lots of hugs and best wishes,fingers and toes crossed for you.