Chiari 1 do I have decompression surgery ??

Hi Mandy, my name is Chad. I am registered at QE as well. I've been diagnosed since 2010 approx.

I was seen by Mr Gan and then Mr Kuruvath and now both of are no longer at QE. The only NS makes sense is Mr Graham Flint. It's very difficult getting hold of him. I got to see him after 5 years of waiting. GPs don't have a clue what they are on about. I am on lots of pain killers which are taken every 4 hourly just like you.

Try to make an appointment with Mr Flint and I would not recommend surgery but evey one is different.

Keep in touch so we can chat further and perhaps learn a thing or two.

Talk to you later & stay positive.

Mandy I can only speak about how it was for myself. After the surgery I was surprised that it wasn't as bad as I had thought it would be. Once recovered I was happy I had done it because the headaches and other symptoms were gone.

I continue to have chronic pain because I'd waited so long my body created a syrinx inside my spinal cord Be certain you get a surgeon who has experience with chiari

There is a website at. .. wacma.com there you will find so much info. It's short for WORLD ARNOLD CHIARI MALFORMATION ASSOCIATION. so much help for newly diagnosed people

Hi,

I had a 13mm herniation and had surgery in 2016. Surgery will help stop the herniation. It is not a cure for Chiari. As everyone will tell you, make sure you get a specialist. You might check out Chiari on utube. There is a lot of info. Unfortunately, in my case, I had cervical fusion surgery prior to the chiari surgery. I haven't recovered well. The important thing is to try to have a positive attitude. Also, seek guidance from a mental health professional. Please let us know how things turn out.

You are so lucky to be able to be referred to QE Birmingham, I got my decompression on the 17th of May AND will be seeing Mr Flint again in March, they cancelled my February appointment - perhaps because he is not around (holiday..???) I detested surgery believe me - well they can not force you - but after several management treatment of Chiari, I became worse, and a house bound I kept collapsing when coughing, sneezing, laughing, I was so fed up with the pain - then I agreed to have it done but I check with and got 2nd opinion, I was operated by Mr Flint - their team were soooooooo faaaantaaastic..whoever you have there in QE..do not worry - they are under Mr Flint guidance..so you need not to worry - I am afraid that Mr Flint does not take private patient, hence I have to wait for over a year to have him, only because my health care team (GPs and Neurologist) were so persistent in sending them several letters - i was being in AE because I was black out they thought I had stroke.  Even walking use to be such a struggle, I became a burden on my family I had to stop working (still ....) I supposed to be 1 week i ending up 6 weeks..but the minute I woke from the surgery - the pain gone...just like others I am now suffering from chronic back pain - perhaps waited too long for surgery - but in my opinion - SURGERY is the BEST..I have my life back now (nearly..) but Mr Flnt suggested me to take time easy... I am now drug free, but I am being seen by my orthopedic specialist, Reumatoid specialist... just to check what is going on in the cranial, muscle etc, got back pain..but nothinig at all to compare with chiari..I am walking and yoga daily (at home) drink plenty of water (2 ltrs) reduce carbohydrate- mostly glutten - less frying when cooking - just to warn you ...take it easy even after surgery ..I am on my 7th months now...I am starting to set up my own business now..that to do with helping Chiari Patients.

SO GOOD LUCK..THERE IS LIGHT AT THE END OF THE TUNNEL... I WAS GLAD I FINALLY HAD COMMON SENSE TO HAVE THAT SURGERY.....